So, I wrote this post a few days ago and then didn't publish it. Because it seems like I've been writing a lot about the hard lately. And I don't want to ever give the impression that our journey is just hard all the time. Because it's not. But, as Glennon over at Momastery says life is beautiful and brutal at the same time, it's brutiful. (If you don't read Momastery, you should go take a look. Glennon is amazing.) So I'm posting this, because everyone has hard, every life is brutiful. Ours included. And I promise to write about the beautiful next time.
Some days it feels like there is not enough patience in the world, and all I want to do is completely lose my shit. And by that I mean have a Mommy Meltdown of epic proportions. Yelling, crying, flailing about, railing against the injustice of it all. I don't of course. Because I'm an adult, and a parent. And this is my life. But seriously, how much can one mama take? Can the well of mama patience, and forbearance, and just plain endurance run dry?
As I said in my last post, fall is hard for us. That's all I want to say about it here. If you want more explanations, read The Change in Fall.
So on top of the hard, last week The Boy brought home the first germs of the school year. He coughed and sniffled his way through a few days and then seemed to be getting better. But as any good child does, he shared those germs with me. And they hit me hard. Complete with sore throat, congestion, ear ache, head ache, chills. You know, the kind of thing that makes you want to just hide in bed for a few days to recover. But no, that is not the mama life.
On day number 2 of feeling like something the cat dragged in, The Boy came down with a stomach virus. And I sent the following text to my sis:
My day just went from super crappy to the Tenth Circle of Hell.
What's up?
The Boy is vomiting
OMG, NO!!!!
Because she knows what this means.
The Boy does not tolerate vomiting, to put it mildly. Unusual bodily functions freak him out. I mean, stuff is not supposed to come up from your stomach and out your mouth and nose right? And it hurts, not to mention it's just plain gross. So when The Boy starts to vomit, he panics and his fight or flight response kicks in. As I'm sure you understand, we do not want him running through the house vomiting. So we participate in what we call Greco Roman Vomiting. (If you have a weak stomach, I suggest you stop reading now.)
I have to corral him, and drag him into the smallest bathroom in our house. Since he can't run, he fights me. I try to restrain him in this small, poorly ventilated space. All while he is getting sick. And it is going every where. For what feels like an eternity (but is probably 10 minutes) we wrestle in a space that is being covered in vomit. In the end, we are sitting (or laying if it's a particularly hard round) in puddles of vomit. It has covered the floor, the walls, the sink, the toilet, and us. Our clothes are soaked, hair dripping. The stench is horrific. It's all I can do to keep from vomiting myself. I cannot imagine that the Tenth Circle of Hell is any worse than this.
As I attempt to strip and shower my whimpering child who is clinging to me, Mr. Fix it goes about cleaning and bleaching the now offensive bathroom.
After the third round (yes, three rounds of wrestling, showering, and bleaching) I did finally lose it in the shower. I was exhausted. Battered and bruised from wrestling a child who will quickly outgrow me, my head pounding with fever, my body giving out. On the floor of my shower, with the hot spray washing over me I cried. A big, ugly, snot filled cry. Some days it's just really damn hard.
Later that night as I lay on the floor in his bedroom reassuring him every time he stirred, there in the dark I wondered. What will we do in a few years when he towers over me, is stronger than me. When I can no longer contain him. How will we ever teach him to vomit in the toilet, or sink, or any contained vessel. I'll be 50 years old this year. Sleeping on the floor is no longer the fun slumber party of my youth. I'm old, I'm tired, and I'm sick. And I'm laying on the floor in the dark. How long can I continue to do this.
And that is when I realize it. That Mama Well? The one full of love and patience and understanding and determination? That one. It's infinite. It does not run dry. Ever. As long as I'm breathing I will do what it takes to help my child.
My Side of Typical
Showing posts with label pdd-nos. Show all posts
Showing posts with label pdd-nos. Show all posts
Tuesday, October 13, 2015
Thursday, July 23, 2015
A Little Bit of Patience and Kindness Please
In our town, we have a couple of thoroughfares that are heavily used. These 4 lane roads with 35 mph posted speeds (but everyone goes 40 or even 45) are in mostly commercial/business areas although there is some multi family housing in the area. As you can imagine, crossing the street as a pedestrian might be challenging at best, darn near impossible at worst. Until our city installed pedestrian crossings. These are a new addition, I think we have 5 or 6 of them now. They have greatly improved pedestrian safety. But not everyone is pleased with them as they slow the progress of the traffic.
Yesterday as I was driving home from work, I was stopped at one of the pedestrian crossings with a car next to me also waiting. As I watched the person crossing the street, I recognized him as a Special Olympics participant. He has basketball practice at the same time as The Boy. He always says hi to The Boy and me when we see him. Clearly there is some Adult DD housing somewhere in the area as more often than not I recognize the people crossing the street as Special Olympics participants.
This particular person, we'll call him Troy, has some ambulatory issues. So he moves a little slower than the average Joe. (Whoever wanted to be average anyway) As he was making his way in front of the car beside me, the driver honked and made gestures for Troy to hurry along. And my heart broke just a little. I tried to hide it as I smiled and waved at Troy, hoping he would think I was the one that honked. He smiled and waved back, yelling "Hi (The Boy's) mom". But I don't think he was fooled. Not for a minute. And my heart broke a little bit more.
In that instance what I saw was my boy in 15 or 20 years. I see him doing his best to maneuver his way through this world that simply was not made for him. I see him taking care of himself, following the rules, happy with his life and in his world. I see him proudly walking back home from the nearby store with a snack paid for with his own earnings. And then I see some jack@$$ being impatient and unkind. Yelling at "the retard" to hurry up. Honestly, I go from a broken heart to my blood boiling in about 0.6 seconds.
Sometime I want to yell from the rooftops "What is wrong with people?!?!" And I don't mean the ones with developmental disabilities. I mean all the people who are so impatient and unkind. The ones who think those extra 10 or 20 seconds affected their life. Really? What did it actually cost you to wait? Most likely nothing. But I can tell you what it cost the Troy's of the world when you treat them that way.
It costs them their dignity. It costs them their self respect. It costs them their confidence. It costs them their ability to go out into this world which is just as much theirs as it is yours. It eventually costs them the ability to work, socialize, live even semi independently. Because if every time you venture out into the world you are treated like you don't belong, like you aren't good enough; well eventually you believe it. And then you quit trying.
How hard is it to just be kind. Patience doesn't cost a thing. But it can sure make another person's life a whole lot more manageable, and dare I say, even better.
As Ellen says when she ends her show every day "Be kind to one another." Please.
Yesterday as I was driving home from work, I was stopped at one of the pedestrian crossings with a car next to me also waiting. As I watched the person crossing the street, I recognized him as a Special Olympics participant. He has basketball practice at the same time as The Boy. He always says hi to The Boy and me when we see him. Clearly there is some Adult DD housing somewhere in the area as more often than not I recognize the people crossing the street as Special Olympics participants.
This particular person, we'll call him Troy, has some ambulatory issues. So he moves a little slower than the average Joe. (Whoever wanted to be average anyway) As he was making his way in front of the car beside me, the driver honked and made gestures for Troy to hurry along. And my heart broke just a little. I tried to hide it as I smiled and waved at Troy, hoping he would think I was the one that honked. He smiled and waved back, yelling "Hi (The Boy's) mom". But I don't think he was fooled. Not for a minute. And my heart broke a little bit more.
In that instance what I saw was my boy in 15 or 20 years. I see him doing his best to maneuver his way through this world that simply was not made for him. I see him taking care of himself, following the rules, happy with his life and in his world. I see him proudly walking back home from the nearby store with a snack paid for with his own earnings. And then I see some jack@$$ being impatient and unkind. Yelling at "the retard" to hurry up. Honestly, I go from a broken heart to my blood boiling in about 0.6 seconds.
Sometime I want to yell from the rooftops "What is wrong with people?!?!" And I don't mean the ones with developmental disabilities. I mean all the people who are so impatient and unkind. The ones who think those extra 10 or 20 seconds affected their life. Really? What did it actually cost you to wait? Most likely nothing. But I can tell you what it cost the Troy's of the world when you treat them that way.
It costs them their dignity. It costs them their self respect. It costs them their confidence. It costs them their ability to go out into this world which is just as much theirs as it is yours. It eventually costs them the ability to work, socialize, live even semi independently. Because if every time you venture out into the world you are treated like you don't belong, like you aren't good enough; well eventually you believe it. And then you quit trying.
How hard is it to just be kind. Patience doesn't cost a thing. But it can sure make another person's life a whole lot more manageable, and dare I say, even better.
As Ellen says when she ends her show every day "Be kind to one another." Please.
Thursday, June 18, 2015
R and B
The Boy and I were at the pool the other day (where we are nearly every afternoon during the summer) and a girl runs up to him shouting "R! R! Do you remember me? B from first grade?"
This beautiful young lady was in The Boy's kindergarten and first grade classrooms, but moved out of state part way through first grade. He saw her once in second grade when she came back and visited the school. They haven't seen each other in almost 2 years. But as soon as The Boy walked out the door to the pool, she recognized him and ran up to greet him, like they still see each other every day at school.
They played together off and on for the 2 hours we were at the pool that afternoon. Reconnecting a friendship that started in kindergarten. A friendship that started because of the kind, thoughtful heart of this young lady.
The first day of kindergarten Miss "B" watched as I helped The Boy find his name above a hook and then place his backpack on the hook. I could see her out of the corner of my eye with a thoughtful look on her face as she noticed how he needed a little extra help, how he didn't talk much, how he shied away from the other kids and the teacher. I'm not positive, but I'm fairly certain she noticed his death grip on my hand with her keen sense of observation.
On the second day, she was waiting at the door when we arrived. She greeted him by name and said "come sit by me in morning circle." This became the morning routine.
I watched throughout that school year as the relationship developed. I'll admit I was a little concerned that it would be a care taker/dependent relationship. But what I watched unfold was a real friendship. True, there were times when she was clearly his helper. Like the first time he attempted a fire drill (with noise cancelling headphones of course). When the alarm went off, she was immediately at his side, holding his hand, reassuring him that it would be OK. She guided him out the door to the field where the class gathered. Her genuine concern for him was obvious. (I was there in the wings just in case it all went to crap and he needed to escape.)
But I watched them at recess too. Where they played with each other on the playground, laughing and having fun. I watched on field trips when she asked him to sit with her on the bus and they looked at books together. Always books about heavy equipment or airplanes, his favorites. I'm sure these wouldn't have been her choice, but she was probably one of a few 6 year old girls who could name all the construction vehicles. Yes, she tailored their activities to his interests, but she was clearly enjoying it too.
The last day of school as the class walked to the nearby park, they skipped hand in hand, her singing silly songs as they giggled and laughed, stopping to pick flowers or look at a bug. I walked a few paces behind and realized that my boy had a friend. His first friend. A true friend. A friend who valued him and all his unique quirkiness. Someone to sing with and laugh with and skip down the street hand in hand with. All because of a little girl with a beautiful heart.
To those who say kids with ASD struggle to develop true friendships, I give you "R and B":
P.S. I'd like to say the story ends with her having moved back to our town and their friendship continuing to blossom. But no, she was just here for the day. She no longer lives out of state, but in a town a few hours from us. I'm hoping this means she will be back to visit occasionally. And she's no longer a full head shorter than he is. :)
This beautiful young lady was in The Boy's kindergarten and first grade classrooms, but moved out of state part way through first grade. He saw her once in second grade when she came back and visited the school. They haven't seen each other in almost 2 years. But as soon as The Boy walked out the door to the pool, she recognized him and ran up to greet him, like they still see each other every day at school.
They played together off and on for the 2 hours we were at the pool that afternoon. Reconnecting a friendship that started in kindergarten. A friendship that started because of the kind, thoughtful heart of this young lady.
The first day of kindergarten Miss "B" watched as I helped The Boy find his name above a hook and then place his backpack on the hook. I could see her out of the corner of my eye with a thoughtful look on her face as she noticed how he needed a little extra help, how he didn't talk much, how he shied away from the other kids and the teacher. I'm not positive, but I'm fairly certain she noticed his death grip on my hand with her keen sense of observation.
On the second day, she was waiting at the door when we arrived. She greeted him by name and said "come sit by me in morning circle." This became the morning routine.
I watched throughout that school year as the relationship developed. I'll admit I was a little concerned that it would be a care taker/dependent relationship. But what I watched unfold was a real friendship. True, there were times when she was clearly his helper. Like the first time he attempted a fire drill (with noise cancelling headphones of course). When the alarm went off, she was immediately at his side, holding his hand, reassuring him that it would be OK. She guided him out the door to the field where the class gathered. Her genuine concern for him was obvious. (I was there in the wings just in case it all went to crap and he needed to escape.)
But I watched them at recess too. Where they played with each other on the playground, laughing and having fun. I watched on field trips when she asked him to sit with her on the bus and they looked at books together. Always books about heavy equipment or airplanes, his favorites. I'm sure these wouldn't have been her choice, but she was probably one of a few 6 year old girls who could name all the construction vehicles. Yes, she tailored their activities to his interests, but she was clearly enjoying it too.
The last day of school as the class walked to the nearby park, they skipped hand in hand, her singing silly songs as they giggled and laughed, stopping to pick flowers or look at a bug. I walked a few paces behind and realized that my boy had a friend. His first friend. A true friend. A friend who valued him and all his unique quirkiness. Someone to sing with and laugh with and skip down the street hand in hand with. All because of a little girl with a beautiful heart.
To those who say kids with ASD struggle to develop true friendships, I give you "R and B":
P.S. I'd like to say the story ends with her having moved back to our town and their friendship continuing to blossom. But no, she was just here for the day. She no longer lives out of state, but in a town a few hours from us. I'm hoping this means she will be back to visit occasionally. And she's no longer a full head shorter than he is. :)
Thursday, June 4, 2015
The Gym, A Girl, & Inclusion
The Boy and I were walking through the health club yesterday. I was going to a class, he was going to the playroom. Ah, the playroom. Intended for the youngest of members, those under 8 years old. The Boy, now 9, still goes in the playroom. I don't dare leave him unsupervised, wreaking havoc all over the gym. And they graciously let him continue to come in and play. All of the gym employees know him, have for years. And they understand. It sometimes is a little awkward when I go to pick him up and the other moms are picking up kids who are literally half his size. Not kidding, he's a very tall 9 year old. Sometimes we get some weird looks from the other moms. But whatever, I no longer let these silly little things bother me. My boy loves the playroom and has fun. And the playroom supervisors enjoy having him. In fact, one has become our trusted kid sitter. (I believe in using sitters who know what they are signing up for and are familiar to The Boy)
Anyway, back to my story. As we were walking through the gym to the playroom, a girl who looked to be about his age said "hi (The Boys name)". He turned to her and said "hi (The Boy's name)" right back to her. His focus was getting to the play room where he could play with all the toys. I assumed he was just echoing her greeting without paying much attention. And he went right back to obsessing over the toys in the playroom, his interaction done.
So I struck up a conversation with her. I asked her how she knew The Boy. She goes to his school. I asked her if she was in his (GenEd) class. She said no, she was in second grade. (He's in third.) This puzzled me a little so I asked her how she new The Boy. With a big grin she replied "oh, I see him around school and sometimes we play together at recess."
And I nearly stopped in my tracks.
Here is a kid who is not in his class, has no "formal" interaction with him, and yet she sometimes plays with him at recess. Presumably unprompted, on her own. I'll be honest here, my heart nearly exploded on the spot. I worry ALL THE TIME about how The Boy integrates into the general population at his school. Do they accept him? Does he socialize with them? Is he comfortable interacting with them? Are they comfortable interacting with him? Is he developing relationships? Does he have friends? And on and on.
I think about these things all the time. Because in the end, our goal for the The Boy is to live a full, productive adult life with a job and social life out in the community. What form this takes, well we don't know yet, but that is the general goal. And how can he reach that goal if we don't start now with interactions with his typical peers. Encouraging social interactions from both sides. Encouraging him to be part of the community now, his community at school as well as the community at large. Developing relationships. Encouraging inclusion, acceptance, understanding on all parts. And more importantly, everyone enjoying those interactions and relationships.
Exchanges like the one I had with that young lady truly encourage me. Seriously, my heart was singing. It was so full of peace and love and hope. I wanted to hug her, but didn't want to scare her.
I know, I know, its a far cry from an elementary school to the adult community at large (or even the high school). I don't completely live in a Pollyanna world. I know that we have a very long road to travel. But its a start in the right direction. And I'll take my encouragement where ever I can find it.
Oh, and the girl's name? Turns out it is the same as The Boy's. He wasn't echoing, he was really saying hi to her.
Anyway, back to my story. As we were walking through the gym to the playroom, a girl who looked to be about his age said "hi (The Boys name)". He turned to her and said "hi (The Boy's name)" right back to her. His focus was getting to the play room where he could play with all the toys. I assumed he was just echoing her greeting without paying much attention. And he went right back to obsessing over the toys in the playroom, his interaction done.
So I struck up a conversation with her. I asked her how she knew The Boy. She goes to his school. I asked her if she was in his (GenEd) class. She said no, she was in second grade. (He's in third.) This puzzled me a little so I asked her how she new The Boy. With a big grin she replied "oh, I see him around school and sometimes we play together at recess."
And I nearly stopped in my tracks.
Here is a kid who is not in his class, has no "formal" interaction with him, and yet she sometimes plays with him at recess. Presumably unprompted, on her own. I'll be honest here, my heart nearly exploded on the spot. I worry ALL THE TIME about how The Boy integrates into the general population at his school. Do they accept him? Does he socialize with them? Is he comfortable interacting with them? Are they comfortable interacting with him? Is he developing relationships? Does he have friends? And on and on.
I think about these things all the time. Because in the end, our goal for the The Boy is to live a full, productive adult life with a job and social life out in the community. What form this takes, well we don't know yet, but that is the general goal. And how can he reach that goal if we don't start now with interactions with his typical peers. Encouraging social interactions from both sides. Encouraging him to be part of the community now, his community at school as well as the community at large. Developing relationships. Encouraging inclusion, acceptance, understanding on all parts. And more importantly, everyone enjoying those interactions and relationships.
Exchanges like the one I had with that young lady truly encourage me. Seriously, my heart was singing. It was so full of peace and love and hope. I wanted to hug her, but didn't want to scare her.
I know, I know, its a far cry from an elementary school to the adult community at large (or even the high school). I don't completely live in a Pollyanna world. I know that we have a very long road to travel. But its a start in the right direction. And I'll take my encouragement where ever I can find it.
Oh, and the girl's name? Turns out it is the same as The Boy's. He wasn't echoing, he was really saying hi to her.
Saturday, May 30, 2015
English Language Learners
Where I work we have several employees for whom English is a second language. I don't interact with them directly very often, only about HR issues. But when I do, I'm always struck by how their use of English is so similar to The Boy's. Or maybe I should say The Boy's use of language is similar to theirs; almost as if English is a second language for him.
Last weekend The Boy was outside riding his bike. I'll say that again, he was riding his bike. Still so amazing to me. Anyway, I went outside to check on him and saw blood running down his leg. It looked like he had fallen off the bike and scraped up his leg. Without a word or any tears, typical. And worrisome, but that is a topic for another post.
When I asked him if he got hurt his reply was "Yes. My leg is not feel good." He didn't say my leg hurts, or my leg is bleeding, or even my leg doesn't feel good. He said "My leg is not feel good." Not exactly how any of us would say that. His point was clear enough, anyone would understand his message. It's just different, and a little awkward. And is usually one of the first signs to strangers that he is unique. Perhaps I should just tell them that he is an English Language Learner.
Now, if I could just figure out what his native tongue is...
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Friday, May 1, 2015
Tired
I love The Boy more than life itself. And I wouldn't change a hair on his head. He is just the way he is supposed to be, made perfectly. But that doesn't mean I don't get overwhelmed sometimes. And frustrated. And just plain tired. Yesterday was one of those days. A day for a small pity party and a good cry. I. Was. Tired.
I sent the following email to my sister:
Crap. I'm having one of those days where I'm just so damn tired of it all. I just want one calm, easy morning where I don't have to make a juice cocktail or administer meds. Where I don't have to sprinkle enzymes on everything. One day where I don't have to pin him to the floor just to brush his teeth or chase him through the house to brush his hair. One quiet morning where I don't have to listen to the school schedule 84 times before the bus arrives. Hell, one morning where I don't have to make the exact same toast and scrambled eggs for breakfast. I just want one peaceful shower, just one! I'm just so tired of it all. It's the same damn thing every day; lather, rinse, and repeat. I'm old and I'm tired.
I used to feel guilty for these feelings. But you know what? I'm human. I'm allowed to feel what I'm feeling. It doesn't mean I love my son any less. Or wish he was different. We all get overwhelmed and frustrated and just plain tired sometimes. Its OK, really it is. For me, its important to acknowledge these feelings. Vent to someone who understands. Get it out. And then move on with my day.
After The Boy got on the bus, I had a good cry. And then I got ready for my day and left for work.
I sent the following email to my sister:
Crap. I'm having one of those days where I'm just so damn tired of it all. I just want one calm, easy morning where I don't have to make a juice cocktail or administer meds. Where I don't have to sprinkle enzymes on everything. One day where I don't have to pin him to the floor just to brush his teeth or chase him through the house to brush his hair. One quiet morning where I don't have to listen to the school schedule 84 times before the bus arrives. Hell, one morning where I don't have to make the exact same toast and scrambled eggs for breakfast. I just want one peaceful shower, just one! I'm just so tired of it all. It's the same damn thing every day; lather, rinse, and repeat. I'm old and I'm tired.
I used to feel guilty for these feelings. But you know what? I'm human. I'm allowed to feel what I'm feeling. It doesn't mean I love my son any less. Or wish he was different. We all get overwhelmed and frustrated and just plain tired sometimes. Its OK, really it is. For me, its important to acknowledge these feelings. Vent to someone who understands. Get it out. And then move on with my day.
After The Boy got on the bus, I had a good cry. And then I got ready for my day and left for work.
Friday, February 20, 2015
Never Too Late
The Boy is reading.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
Thursday, February 12, 2015
Echolalia
Back when we were trying to get a diagnosis, any diagnosis, for The Boy and I was asked about echolalia I said he doesn't do that. And I was wrong. I was not completely versed (probably still not) in the subtleties of echolalia. The Boy most certainly does echo words and phrases, its just not always very obvious. And I am learning to see the different situation where he really does use echolalia.
When I look back now (hind sight is much closer to 20/20) I can see that whenever we asked if he wanted milk or water, he always answered water. Or whatever the last choice was. I finally figured this out by asking the same question in different orders a few times in a row.
Do you want to wear jeans or sweats?
Sweats.
Do you want to wear sweats or jeans?
Jeans.
All within one minute of each other. We've now learned to wait a few beats, then ask Which ones do you want? And then he can usually tell us what he really wants. Thankfully the days of meltdowns over misunderstanding his choices are (mostly) over.
I picked up on another subtle echo just last week. As I talked about in my post "We Survived...I Think", The Boy has had one illness after another this fall/winter. Last week when he came down with another (thankfully short lived) virus he started asking "You OK?" all the time. And I couldn't figure out why he kept asking me if I was OK. Until I saw the sniffles and runny nose. And it finally dawned on me, he was trying to tell me that he wasn't OK. So the next time he asked me I didn't just answer "Yes I'm fine", I then asked him if he was OK. And he said "No, don't feel good".
When ever The Boy is sick we ask him (probably too many times) "Are you OK"? So naturally, when he doesn't feel good he echoes "You OK"? It is not obvious (at least it wasn't to me initially) but he is echoing what we say to him when he's sick. Really, now that I'm writing about it, it is sort of obvious.
He does something similar whenever he has an accident or something breaks. He will yell "I OK!" Because what is the first thing you say when an accident occurs? "Are you OK?" So he gets straight to the point and the first thing he says is "I OK". Whenever we hear those 2 words, we know we need to go investigate. This may not be a true case of echolalia, but it does show how he makes strong associations between phrases and events.
I'm sure I'll discover more and more instances of where he actually does echo words and phrases. Its a never ending learning curve for me.
When I look back now (hind sight is much closer to 20/20) I can see that whenever we asked if he wanted milk or water, he always answered water. Or whatever the last choice was. I finally figured this out by asking the same question in different orders a few times in a row.
Do you want to wear jeans or sweats?
Sweats.
Do you want to wear sweats or jeans?
Jeans.
All within one minute of each other. We've now learned to wait a few beats, then ask Which ones do you want? And then he can usually tell us what he really wants. Thankfully the days of meltdowns over misunderstanding his choices are (mostly) over.
I picked up on another subtle echo just last week. As I talked about in my post "We Survived...I Think", The Boy has had one illness after another this fall/winter. Last week when he came down with another (thankfully short lived) virus he started asking "You OK?" all the time. And I couldn't figure out why he kept asking me if I was OK. Until I saw the sniffles and runny nose. And it finally dawned on me, he was trying to tell me that he wasn't OK. So the next time he asked me I didn't just answer "Yes I'm fine", I then asked him if he was OK. And he said "No, don't feel good".
When ever The Boy is sick we ask him (probably too many times) "Are you OK"? So naturally, when he doesn't feel good he echoes "You OK"? It is not obvious (at least it wasn't to me initially) but he is echoing what we say to him when he's sick. Really, now that I'm writing about it, it is sort of obvious.
He does something similar whenever he has an accident or something breaks. He will yell "I OK!" Because what is the first thing you say when an accident occurs? "Are you OK?" So he gets straight to the point and the first thing he says is "I OK". Whenever we hear those 2 words, we know we need to go investigate. This may not be a true case of echolalia, but it does show how he makes strong associations between phrases and events.
I'm sure I'll discover more and more instances of where he actually does echo words and phrases. Its a never ending learning curve for me.
Thursday, October 2, 2014
An Open Letter to Our Amazing Neighborhood School
To our amazing neighborhood school family:
After much discussion and deliberation, we have made the very difficult decision to move Bambam to another school with a dedicated special education classroom. As most of you know, Bambam has varied and complicated special needs. We have high hopes that his many needs will be sucsessfully met in his new school. But that didn't make this decision an easy one.
This decision was difficult for many reasons; not the least of which was the thought of leaving this amazing school. You have been his school family for 3 years. During that time he has been accepted, included, respected, and loved by teachers, administrators, support staff, students and parents alike. I cannot imagine a more positive, inclusive environment in any school anywhere.
The student population has been wonderful. Bambam has not been simply tolerated; after all, who really has a goal of being tolerated? He was accepted. His classmates included him when they could, helped him when he needed it, celebrated his accomplishments, watched out for him, and most importantly became his friends. Bambam talks about each and every one of them all the time.
Some students have been in class with Bambam for 3 years, some for 2, some for 1. Some just passed him in the hallway or saw him in the cafeteria or on the playground. It didn't seem to matter. It appears they all know who he is. When we are in town or at the pool inevitably a child will come up and talk to Bambam. I sometimes do not know or recognize them. But they quickly tell me they go to school with him. Kids from kindergarten to 5th grade, they all seem genuinely happy to see him. The world could learn a few things from our little neighborhood school.
And so it is with a heavy heart that we are now closing this chapter and starting a new one. Please know that we could never thank you enough for all each of you have done for Bambam. I only hope that you too have gained something from the experience of knowing our sweet boy.
And, instead of saying goodbye, we will say that we hope to see you around town.
After much discussion and deliberation, we have made the very difficult decision to move Bambam to another school with a dedicated special education classroom. As most of you know, Bambam has varied and complicated special needs. We have high hopes that his many needs will be sucsessfully met in his new school. But that didn't make this decision an easy one.
This decision was difficult for many reasons; not the least of which was the thought of leaving this amazing school. You have been his school family for 3 years. During that time he has been accepted, included, respected, and loved by teachers, administrators, support staff, students and parents alike. I cannot imagine a more positive, inclusive environment in any school anywhere.
The student population has been wonderful. Bambam has not been simply tolerated; after all, who really has a goal of being tolerated? He was accepted. His classmates included him when they could, helped him when he needed it, celebrated his accomplishments, watched out for him, and most importantly became his friends. Bambam talks about each and every one of them all the time.
Some students have been in class with Bambam for 3 years, some for 2, some for 1. Some just passed him in the hallway or saw him in the cafeteria or on the playground. It didn't seem to matter. It appears they all know who he is. When we are in town or at the pool inevitably a child will come up and talk to Bambam. I sometimes do not know or recognize them. But they quickly tell me they go to school with him. Kids from kindergarten to 5th grade, they all seem genuinely happy to see him. The world could learn a few things from our little neighborhood school.
And so it is with a heavy heart that we are now closing this chapter and starting a new one. Please know that we could never thank you enough for all each of you have done for Bambam. I only hope that you too have gained something from the experience of knowing our sweet boy.
And, instead of saying goodbye, we will say that we hope to see you around town.
Monday, March 17, 2014
Placement
Its that time of year. We are starting the discussions of Bambam's placement next year. Mr. Fixit and I actually started the discussion this year. We've begun to wonder if Bambam's current placement is the best environment for him to learn and grow. We've been discussing it at home for months. And have now started discussing it with Bambam's educational team.
We love our neighborhood school. And they have been wonderful to Bambam. All of them. The teachers, his aids, the kids, the office staff, the librarian, even the janitor. Every single person there. He couldn't be in a place where he is more accepted, included, loved and even celebrated. Except maybe at home.
But here's the thing. He's now 8, finishing up 2nd grade. Well, his version anyway. And, he's yards behind. He is learning; always plugging ahead in his own way, in his own time. But so are all the other kids. And it's obvious he isn't going to catch up any time soon. Maybe never. His is a different path. And that's OK. We need to respect that, embrace it even.
3rd grade is a pretty big jump. All of a sudden the kids are in a more academic environment with far more self study. They need to be self starters. Gone are the story times and longer recesses. Gone are the classroom buddies from the older classes helping them with projects. Now they are the older class with kindergarten buddies to help. And honestly, Bambam is just not ready for that. Any of it.
While his classmates are reading small chapter books, he is learning to read sight words and short sentences. His classmates are learning multiplication tables and he's still correspondence counting to 10 and sorting like objects. They are writing in daily journals and he's learning to write his name. Self starter is not a word I would use to describe his learning style. Unless it involves a ball or an animal, his attention span is about 11 minutes. None of this lends itself very successfully to 3rd grade in a typical classroom. We've decided its time to look at all of our options.
We could continue on our current path. Assign him to a home classroom with a 1:1. Continue with the individualized education plan that includes his own academic goals, along with social, adaptive, speech, OT, and PT goals. But here is what happens. He gets overwhelmed with sensory input in the classroom. So he and his aid have a cubicle in the LRC where he spends 75-80% of his day doing 1:1 work with her. Isolated from all the other kids. Isolated from everyone. And I'm not sure this is what's best for him. It is the best the school could provide under the current conditions, and we are ever so thankful for that. But is it what is best for Bambam? I'm not so sure.
I've been watching Bambam at school, paying close attention to his non-verbal queues. And its very clear to me that he is starting to see the differences between his classmates and himself. Until now, he appeared to not notice. Whether this is true or not, I don't know. But now, I see hints of him seeing it, becoming aware of it. He wants to do what his classmates are doing, but he can't. He notices when someone is watching or staring at him. He may not totally understand all of the reasons why, but he's noticing that it is different. And in some ways it breaks my heart. Ignorance can be bliss.
But if he's noticing, I think it is critical that he know there are other kids like him. He needs to find "his people". He needs "neurological peers". He also need "neuro-typical peers". I think both are critical to his growth and well being. He needs to know he is not alone, but he also needs to learn how to function in a world full of "neuro-typical people". Because that is what we have. The truth is, he will always have to interact with NT people. Hopefully he will also be around those similar to him, others on the spectrum.
And so, we are going to visit the self contained classroom in our district. This has been a major evolution for me. In the past I was adamantly opposed to placing him in the self contained classroom. And now I'm asking to see it. Our growth as humans never ends, but that is a thought for another day.
Tomorrow morning at 9:00 am, I will be sitting in the back of the self contained K-3 classroom located in another school. I'm both curious and terrified. I do not know what I will find there. I'm hoping to find children with varying differences but still similar to Bambam. I'm hoping to find a teacher and a whole slew of aids who are knowledgeable, patient, understanding, kind, encouraging, and loving. I'm hoping to find NT kids in the other classrooms that are accepting and inclusive but more importantly, kind and caring. I'm hoping to find administrators who "get it". I'm hoping.
But even if we find the most wonderful, best of all possible situations in that self contained classroom in the other school, we are still faced with a very difficult decision. Bambam loves his school. He loves his classmates. He talks about his friends constantly. He has play dates with them, goes to their birthday parties and they come to his. How can we pull him out of his current school where he's been in class with the these kids for 3 years? Kids who know him, understand him, know how to interact with him, include him, genuinely like him. And it is not just the kids in his class. It is the entire school. They are like part of our extended family. I wish the self contained classroom was in his current school.
These decisions are so hard. We so desperately want to make the right decision for our sweet boy. Sometimes I wish he came with an instruction guide.
We love our neighborhood school. And they have been wonderful to Bambam. All of them. The teachers, his aids, the kids, the office staff, the librarian, even the janitor. Every single person there. He couldn't be in a place where he is more accepted, included, loved and even celebrated. Except maybe at home.
But here's the thing. He's now 8, finishing up 2nd grade. Well, his version anyway. And, he's yards behind. He is learning; always plugging ahead in his own way, in his own time. But so are all the other kids. And it's obvious he isn't going to catch up any time soon. Maybe never. His is a different path. And that's OK. We need to respect that, embrace it even.
3rd grade is a pretty big jump. All of a sudden the kids are in a more academic environment with far more self study. They need to be self starters. Gone are the story times and longer recesses. Gone are the classroom buddies from the older classes helping them with projects. Now they are the older class with kindergarten buddies to help. And honestly, Bambam is just not ready for that. Any of it.
While his classmates are reading small chapter books, he is learning to read sight words and short sentences. His classmates are learning multiplication tables and he's still correspondence counting to 10 and sorting like objects. They are writing in daily journals and he's learning to write his name. Self starter is not a word I would use to describe his learning style. Unless it involves a ball or an animal, his attention span is about 11 minutes. None of this lends itself very successfully to 3rd grade in a typical classroom. We've decided its time to look at all of our options.
We could continue on our current path. Assign him to a home classroom with a 1:1. Continue with the individualized education plan that includes his own academic goals, along with social, adaptive, speech, OT, and PT goals. But here is what happens. He gets overwhelmed with sensory input in the classroom. So he and his aid have a cubicle in the LRC where he spends 75-80% of his day doing 1:1 work with her. Isolated from all the other kids. Isolated from everyone. And I'm not sure this is what's best for him. It is the best the school could provide under the current conditions, and we are ever so thankful for that. But is it what is best for Bambam? I'm not so sure.
I've been watching Bambam at school, paying close attention to his non-verbal queues. And its very clear to me that he is starting to see the differences between his classmates and himself. Until now, he appeared to not notice. Whether this is true or not, I don't know. But now, I see hints of him seeing it, becoming aware of it. He wants to do what his classmates are doing, but he can't. He notices when someone is watching or staring at him. He may not totally understand all of the reasons why, but he's noticing that it is different. And in some ways it breaks my heart. Ignorance can be bliss.
But if he's noticing, I think it is critical that he know there are other kids like him. He needs to find "his people". He needs "neurological peers". He also need "neuro-typical peers". I think both are critical to his growth and well being. He needs to know he is not alone, but he also needs to learn how to function in a world full of "neuro-typical people". Because that is what we have. The truth is, he will always have to interact with NT people. Hopefully he will also be around those similar to him, others on the spectrum.
And so, we are going to visit the self contained classroom in our district. This has been a major evolution for me. In the past I was adamantly opposed to placing him in the self contained classroom. And now I'm asking to see it. Our growth as humans never ends, but that is a thought for another day.
Tomorrow morning at 9:00 am, I will be sitting in the back of the self contained K-3 classroom located in another school. I'm both curious and terrified. I do not know what I will find there. I'm hoping to find children with varying differences but still similar to Bambam. I'm hoping to find a teacher and a whole slew of aids who are knowledgeable, patient, understanding, kind, encouraging, and loving. I'm hoping to find NT kids in the other classrooms that are accepting and inclusive but more importantly, kind and caring. I'm hoping to find administrators who "get it". I'm hoping.
But even if we find the most wonderful, best of all possible situations in that self contained classroom in the other school, we are still faced with a very difficult decision. Bambam loves his school. He loves his classmates. He talks about his friends constantly. He has play dates with them, goes to their birthday parties and they come to his. How can we pull him out of his current school where he's been in class with the these kids for 3 years? Kids who know him, understand him, know how to interact with him, include him, genuinely like him. And it is not just the kids in his class. It is the entire school. They are like part of our extended family. I wish the self contained classroom was in his current school.
These decisions are so hard. We so desperately want to make the right decision for our sweet boy. Sometimes I wish he came with an instruction guide.
Monday, January 20, 2014
Patience and Understanding
I've waited a week to write about this. My emotions are still raw. I'm trying so hard to practice the patience and understanding I want others to give Bambam, but honestly I'm struggling with it.
About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.
So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.
The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.
I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.
She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.
Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.
Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.
So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.
About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.
So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.
The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.
I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.
She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.
Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.
Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.
So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.
Tuesday, November 5, 2013
What's his thing?
I don't know about the rest of the autism parents out there, but whenever I'm in public and my son's diagnosis comes up I'm frequently asked some version of the "what is his thing" question. Um...his thing? Oh, you know, does he count cards, know what day of the week any date was, play Mozart by ear? His special skill?
It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.
I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it.
Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now.
At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:
A's parents: Is that your son out there in the green shirt?
Me: Yes, that's Bambam.
A's parents: How old is he?
Me: He's 7.
A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?
Me: Oh, no. He's autistic. And yes, he is big. And athletic.
A's parents: Is that his special skill, athletics?
And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it.
I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.
It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.
I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it.
Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now.
At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:
A's parents: Is that your son out there in the green shirt?
Me: Yes, that's Bambam.
A's parents: How old is he?
Me: He's 7.
A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?
Me: Oh, no. He's autistic. And yes, he is big. And athletic.
A's parents: Is that his special skill, athletics?
And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it.
I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.
Thursday, October 17, 2013
Hugs and Loves
For years, Bambam has greeted me first thing in the morning by asking for a hug. I'm not sure when this started, it must have been somewhere around 3 years of age when he began using words. Every morning He comes downstairs with arms stretched out saying "hug". Bambam is a sensory seeker. Deep pressure calms him. I think this is his way of grounding himself before the onslaught of the day starts. And of course I comply. Because what mom doesn't want to start the day with a big squeeze. It is awesome.
For the past 4 years, everytime I get my morning squeeze, I say "I love you". And for years it was answered by complete silence. And then, as words came for him, he would respond with "I like you". But he never said the word love. I often wondered why. I'm sure he could pronounce it, he says much harder words. My (probably flawed) reasoning is because he didn't understand the abstract meaning and how to apply it. The word like is used much more frequently in our everyday language. I like toys, I like playing, I like brother, etc. But love is not used as often. So it is harder for him to learn how to use it.
And then one day a couple of weeks ago when I said "I love you" during our morning squeeze, he looked at me and said, "I love planes". Progress! I was so excited as I also recognized that every autism parent needs to have thick skin and not be offended easily. I mean really, who wants to hear "I love planes" in response to telling them "I love you"? Well, I do as it means progress. He does love planes, he was learning how to use the word love.
This morning during our morning squeeze, I must have been a little distracted as my "I love you" was delayed. And I was rewarded by my little man saying "I love you". And I cried.
My 7 year old son said "I love you" for the first time ever today.
Best. Day. Ever.
For the past 4 years, everytime I get my morning squeeze, I say "I love you". And for years it was answered by complete silence. And then, as words came for him, he would respond with "I like you". But he never said the word love. I often wondered why. I'm sure he could pronounce it, he says much harder words. My (probably flawed) reasoning is because he didn't understand the abstract meaning and how to apply it. The word like is used much more frequently in our everyday language. I like toys, I like playing, I like brother, etc. But love is not used as often. So it is harder for him to learn how to use it.
And then one day a couple of weeks ago when I said "I love you" during our morning squeeze, he looked at me and said, "I love planes". Progress! I was so excited as I also recognized that every autism parent needs to have thick skin and not be offended easily. I mean really, who wants to hear "I love planes" in response to telling them "I love you"? Well, I do as it means progress. He does love planes, he was learning how to use the word love.
This morning during our morning squeeze, I must have been a little distracted as my "I love you" was delayed. And I was rewarded by my little man saying "I love you". And I cried.
My 7 year old son said "I love you" for the first time ever today.
Best. Day. Ever.
Wednesday, August 14, 2013
An Alternative Route
Right before school let out for summer, I suggested to Mr. Fixit that we take Bambam to see a "holistic" doctor. My suggestion was met with some mild resistance. Mostly because Bambam sees a whole host of doctors and gets poked and prodded enough. Mr. Fixit really tries to limit Bambam's unnecessary doctor visits. He's very protective of him.
But I was fairly insistent. He finally asked me what my goal was. And I replied that I really wanted help with Bambam's GI issues. Numerous appointments with his developmental pediatrician and the pediatric GI specialist at the children's hospital in the city 2 hours away had resulted in no improvements at all. And I was frustrated. I still had a 7 year old with severe encopresis, lots of pain, no bowel control, and a GI system that was basically a mess. Plus, I wanted to explore causes of his psoriasis. I've always been under the impression (right or wrong) that ALL of Bambam's seemingly unrelated issues are actually all related some how. And it seemed to me that most obviously the GI and psoriasis could be diet related. So I begrudgingly got consent. Not that I really need consent, but I like my partner in crime to be on board with what I'm doing, especially when it relates to our kiddos.
Bambam's Neurological Psychiatrist is a DO, not an MD. As such, he is seemingly more open to alternative ideas. (I know that is a very generalized statement and does not apply to all MD's or DO's) When I approached the subject of taking Bambam to a holistic doctor he not only agreed with the idea, he referred us to someone he highly recommended.
The new doc is an MD, not an ND as more holistic doctors tend to be. She is traditionally trained and practices a combination of traditional and alternative medicine utilizing pharmaceuticals, diet, supplements, acupuncture, etc. At the first appointment, she spent 3 hours with us! 3 full hours. Actually, she spent about 30 minutes examining and talking to Bambam. Then I sent him out to my mom who was waiting in the wings, and she spent an additional 2.5 hours talking with me about everything under the sun related to Bambam. I'd never spent so much time in a doctor's office without testing taking place. At the end of the appointment, she sent us home with a stool sample kit.
One month later we discovered that Bambam had a bacterial staph infection in his gut, his pancreas was not producing enough digestive enzymes, and he had NO probiotics in his gut. 3 weeks after treating the infection, putting him on a digestive enzyme supplement, and high dosage probiotics; that kid was pooping in the potty. A week later he was rarely having accidents or "leakage" as its known in the encopresis world. Since starting this new protocol, he has not once woken up in the middle of the night in pain. And I am shocked.
I'm shocked that it was seemingly this easy. Now, I don't discount the fact that maybe this is all coincidental. But I really don't really think so. The change was immediate, drastic, and overwhelmingly complete. Even Mr. Fixit, who was a strong doubter in anything "alternative", attributes the changes to the new protocol. And, if we had any lingering doubts, they were put to rest last week.
Bambam takes a lunch from home to day camp. Hidden in his sandwich are the digestive enzymes he must take with each meal. Since he won't swallow a capsule, we open it and sprinkle the contents into his food. Last Tuesday, he wanted the hot lunch provided by the camp and they let him have it. Wow. For the next 24 hours it was total chaos complete with pain and uncontrolled bowels.
I have 2 theories about the drastic reaction to the hot lunch. First, he did not get his digestive enzymes. And second, the hot lunch was full of fat, sugar, white flour, preservative, dyes, etc that we do not give to Bambam. And his digestive system revolted. Completely. But, after 24 hours of eating normally (for him) and being back on the protocol, he was back to his new self. (And the camp counselors now know that he MUST eat his lunch from home. NO EXCEPTIONS). And, no more doubts.
I'm also shocked that none of this was ever discovered or even explored in the many previous doctor's appointments over the past 7 years. Seriously, it was a fairly simple, 3 day stool test. Why wasn't this done 3 or 4 years ago when I began asking repeatedly about his constant constipation? Or even 5 or 6 years ago when Bambam was waking up screaming in pain several nights a week? Or 7 years ago when we were dealing with the worst reflux any baby has ever had in the history of ever? And I'm not kidding. At least half of everything that baby ate came back up and out. I smelled like baby puke for 2 years. It permeated my skin, not even showers could get rid of it.
My child has suffered for over 7 years with what seemingly should have easily been treated years ago. Instead, we were given Prilosec for the reflux, told to put a heating pad on his belly for the pain, and given Miralax for the constipation. All to treat the symptoms, never looking for the cause. Shouldn't we all have done better? As his mother, I'm struggling with some guilt over this.
I'm not really sure how to end this post. I'm not sure anymore where I fall on the traditional vs. holistic medical approach. But, I will be taking up the holisitic doctor on her suggestion to explore some of Bambam's other symptoms. At this point I'm willing to give her another try. After all, the last time she hit it out of the park. She is now a permanent member of Bambam's Team.
But I was fairly insistent. He finally asked me what my goal was. And I replied that I really wanted help with Bambam's GI issues. Numerous appointments with his developmental pediatrician and the pediatric GI specialist at the children's hospital in the city 2 hours away had resulted in no improvements at all. And I was frustrated. I still had a 7 year old with severe encopresis, lots of pain, no bowel control, and a GI system that was basically a mess. Plus, I wanted to explore causes of his psoriasis. I've always been under the impression (right or wrong) that ALL of Bambam's seemingly unrelated issues are actually all related some how. And it seemed to me that most obviously the GI and psoriasis could be diet related. So I begrudgingly got consent. Not that I really need consent, but I like my partner in crime to be on board with what I'm doing, especially when it relates to our kiddos.
Bambam's Neurological Psychiatrist is a DO, not an MD. As such, he is seemingly more open to alternative ideas. (I know that is a very generalized statement and does not apply to all MD's or DO's) When I approached the subject of taking Bambam to a holistic doctor he not only agreed with the idea, he referred us to someone he highly recommended.
The new doc is an MD, not an ND as more holistic doctors tend to be. She is traditionally trained and practices a combination of traditional and alternative medicine utilizing pharmaceuticals, diet, supplements, acupuncture, etc. At the first appointment, she spent 3 hours with us! 3 full hours. Actually, she spent about 30 minutes examining and talking to Bambam. Then I sent him out to my mom who was waiting in the wings, and she spent an additional 2.5 hours talking with me about everything under the sun related to Bambam. I'd never spent so much time in a doctor's office without testing taking place. At the end of the appointment, she sent us home with a stool sample kit.
One month later we discovered that Bambam had a bacterial staph infection in his gut, his pancreas was not producing enough digestive enzymes, and he had NO probiotics in his gut. 3 weeks after treating the infection, putting him on a digestive enzyme supplement, and high dosage probiotics; that kid was pooping in the potty. A week later he was rarely having accidents or "leakage" as its known in the encopresis world. Since starting this new protocol, he has not once woken up in the middle of the night in pain. And I am shocked.
I'm shocked that it was seemingly this easy. Now, I don't discount the fact that maybe this is all coincidental. But I really don't really think so. The change was immediate, drastic, and overwhelmingly complete. Even Mr. Fixit, who was a strong doubter in anything "alternative", attributes the changes to the new protocol. And, if we had any lingering doubts, they were put to rest last week.
Bambam takes a lunch from home to day camp. Hidden in his sandwich are the digestive enzymes he must take with each meal. Since he won't swallow a capsule, we open it and sprinkle the contents into his food. Last Tuesday, he wanted the hot lunch provided by the camp and they let him have it. Wow. For the next 24 hours it was total chaos complete with pain and uncontrolled bowels.
I have 2 theories about the drastic reaction to the hot lunch. First, he did not get his digestive enzymes. And second, the hot lunch was full of fat, sugar, white flour, preservative, dyes, etc that we do not give to Bambam. And his digestive system revolted. Completely. But, after 24 hours of eating normally (for him) and being back on the protocol, he was back to his new self. (And the camp counselors now know that he MUST eat his lunch from home. NO EXCEPTIONS). And, no more doubts.
I'm also shocked that none of this was ever discovered or even explored in the many previous doctor's appointments over the past 7 years. Seriously, it was a fairly simple, 3 day stool test. Why wasn't this done 3 or 4 years ago when I began asking repeatedly about his constant constipation? Or even 5 or 6 years ago when Bambam was waking up screaming in pain several nights a week? Or 7 years ago when we were dealing with the worst reflux any baby has ever had in the history of ever? And I'm not kidding. At least half of everything that baby ate came back up and out. I smelled like baby puke for 2 years. It permeated my skin, not even showers could get rid of it.
My child has suffered for over 7 years with what seemingly should have easily been treated years ago. Instead, we were given Prilosec for the reflux, told to put a heating pad on his belly for the pain, and given Miralax for the constipation. All to treat the symptoms, never looking for the cause. Shouldn't we all have done better? As his mother, I'm struggling with some guilt over this.
I'm not really sure how to end this post. I'm not sure anymore where I fall on the traditional vs. holistic medical approach. But, I will be taking up the holisitic doctor on her suggestion to explore some of Bambam's other symptoms. At this point I'm willing to give her another try. After all, the last time she hit it out of the park. She is now a permanent member of Bambam's Team.
Tuesday, July 30, 2013
If Only
It seems I've been living in a world of "if only's". Since Bambam was very young and we realized there was something "different" about him, "if only" has been a constant phrase in our house.
"If only Bambam could walk, things would be so much easier."
"If only Bambam could talk."
"If only Bambam could pee in the potty."
"If only Bambam could poo in the potty."
"If only Bambam could swim."
"If only..."
"If only..."
"If only..."
And it seems, he has accomplished each and every one of the "if only's". In his own time, in his own way. But accomplished them just the same. And I've learned a lesson. Its not an "If " its a "when". I've learned NOT to assume my child cannot gain a new skill. I no long say "If Bambam can accomplish...." I now say "When Bambam accomplishes..." Because he will. Never count that kid out. His determination and grace (Not physical grace, he's the clumsiest kid we have. But inner grace and beauty) are amazing to watch. I have no idea where his path in life will lead him, but it is an amazing journey to watch. And I'm so thankful I have a front row seat.
"If only Bambam could walk, things would be so much easier."
"If only Bambam could talk."
"If only Bambam could pee in the potty."
"If only Bambam could poo in the potty."
"If only Bambam could swim."
"If only..."
"If only..."
"If only..."
And it seems, he has accomplished each and every one of the "if only's". In his own time, in his own way. But accomplished them just the same. And I've learned a lesson. Its not an "If " its a "when". I've learned NOT to assume my child cannot gain a new skill. I no long say "If Bambam can accomplish...." I now say "When Bambam accomplishes..." Because he will. Never count that kid out. His determination and grace (Not physical grace, he's the clumsiest kid we have. But inner grace and beauty) are amazing to watch. I have no idea where his path in life will lead him, but it is an amazing journey to watch. And I'm so thankful I have a front row seat.
Thursday, June 27, 2013
Presume Competence
We've adopted a new philosophy. Mr. Fixit and I decided in a fit of proactive parenting that we were going to presume competence from now on with Bambam. We have always been very cautious with him. Sheltering him. Understandably so. But time and time again, he shows us that he is capable and can do so much more than we expect. It may not be the way we assume it will go; it most often is in his own way, in his own time. But he is capable none the less.
By sheltering him I think we've been holding him back. Unintentionally. And really with his best interest at heart. We do not want him to get hurt, physically, emotionally, or mentally. I used to think it was hard to send Miracle Boy out into the world, but sending Bambam with his special needs adds a whole new level to hard. It is gut wrenching, anxiety producing terror. I loose sleep at night, I can't concentrate at work kind of anxiety.
But, in keeping with out new philosophy, we signed Bambam up for a few day camps this summer. The first one had a bit of a rocky start (see It was Good...Until it Wasn't) but really ended up being great. Bambam had a lot of fun and his aid was an amazing young college student. We were feeling confident. Presume Competence indeed!
Week 2 was a different camp. This one is run by the local university, on campus. It is a bigger camp. More kids, more leaders, more chaos. Again I talked to the director, we made a plan. We were ready to go. Until we got to check in on Monday morning.
They didn't have any of his information...not even his name. Not to mention the list of special needs and accommodations. Um what??? There were tons of kids, tons of leaders all mulling around. Someone takes us to another table where they look in a new place for his information. Nothing. All the while Bambam's grip on my hand is getting tighter and tighter, he is nudging closer and closer to me. Presume competence.
Finally we find someone who knows about him. She gets down on her knees and talks to Bambam: asks his name, where he goes to school, promises to get him a name tag by snack time. And she takes us to find his group. Bambam's grip is getting tighter yet. I wonder if any blood is reaching my fingers. Presume competence.
We find his group and I ask to talk to whomever is going to stay with him all morning. They stare at me blankly. Usually the kids are handed off from one activity to another (3 of them in the morning) each with different leaders. Not a formula that will work for Bambam, he needs some sort of consistency. Presuming competence is one thing, throwing all caution to the wind and providing him with no supports at all is unacceptable. I finally convinced one of the young leaders (Stormy or Sporty or something. At that point I was almost ready to flee with my child from this crazy place, I didn't really catch her camp name) to stay with him through all the activities. Bambam found a place for his backpack and reluctantly let go of my hand, following Sporty into the gym. Presume competence.
I fought tears on my way to work. I sent Mr. Fixit this text: I do not have high hopes for this. In fact, I'm very nervous leaving him there. Lots of kids and chaos. He was squeezing my hand really, really hard. To which he answered: I was awake all night worried about it. Presume competence.
An hour later I texted: Well he's been there an hour and I haven't received a phone call yet. That's good, right? To which he said: Unless they lost him. Presume competence.
A little later I texted: One hour to go. My stomach is in knots. To which he answered: I'm going 30 minutes early to find him. Presume Competence.
A text from Mr. Fixit: I'm at the pick up area, just waiting for him. 18 minutes before pickup time. My response: OK, let me know how it went as soon as you can. Presume competence.
Finally: He's fine. They said he did fine. Lots of watching, but he's happy. Presume Competence.
He did it! In his own way, watching; but he did it. He didn't get lost, there were no meltdowns, or tears, or accidents, or calls to mom. And as the week progresses and he gets more comfortable, there will be more participation and less watching. All in his own time. Presume competence.
Presuming competence may be good for Bambam, but it just might kill me. At the very least it will turn my hair completely grey and give me an ulcer. I know in my heart of hearts that in order for him to grow we must give him opportunities to learn, sometimes even nudge him along the the path to his full potential. But honestly, this is the hardest thing I've ever had to do. Presume competence. It sounds great, has a nice ring to it. But I think there may be days when I hate those 2 words.
By sheltering him I think we've been holding him back. Unintentionally. And really with his best interest at heart. We do not want him to get hurt, physically, emotionally, or mentally. I used to think it was hard to send Miracle Boy out into the world, but sending Bambam with his special needs adds a whole new level to hard. It is gut wrenching, anxiety producing terror. I loose sleep at night, I can't concentrate at work kind of anxiety.
But, in keeping with out new philosophy, we signed Bambam up for a few day camps this summer. The first one had a bit of a rocky start (see It was Good...Until it Wasn't) but really ended up being great. Bambam had a lot of fun and his aid was an amazing young college student. We were feeling confident. Presume Competence indeed!
Week 2 was a different camp. This one is run by the local university, on campus. It is a bigger camp. More kids, more leaders, more chaos. Again I talked to the director, we made a plan. We were ready to go. Until we got to check in on Monday morning.
They didn't have any of his information...not even his name. Not to mention the list of special needs and accommodations. Um what??? There were tons of kids, tons of leaders all mulling around. Someone takes us to another table where they look in a new place for his information. Nothing. All the while Bambam's grip on my hand is getting tighter and tighter, he is nudging closer and closer to me. Presume competence.
Finally we find someone who knows about him. She gets down on her knees and talks to Bambam: asks his name, where he goes to school, promises to get him a name tag by snack time. And she takes us to find his group. Bambam's grip is getting tighter yet. I wonder if any blood is reaching my fingers. Presume competence.
We find his group and I ask to talk to whomever is going to stay with him all morning. They stare at me blankly. Usually the kids are handed off from one activity to another (3 of them in the morning) each with different leaders. Not a formula that will work for Bambam, he needs some sort of consistency. Presuming competence is one thing, throwing all caution to the wind and providing him with no supports at all is unacceptable. I finally convinced one of the young leaders (Stormy or Sporty or something. At that point I was almost ready to flee with my child from this crazy place, I didn't really catch her camp name) to stay with him through all the activities. Bambam found a place for his backpack and reluctantly let go of my hand, following Sporty into the gym. Presume competence.
I fought tears on my way to work. I sent Mr. Fixit this text: I do not have high hopes for this. In fact, I'm very nervous leaving him there. Lots of kids and chaos. He was squeezing my hand really, really hard. To which he answered: I was awake all night worried about it. Presume competence.
An hour later I texted: Well he's been there an hour and I haven't received a phone call yet. That's good, right? To which he said: Unless they lost him. Presume competence.
A little later I texted: One hour to go. My stomach is in knots. To which he answered: I'm going 30 minutes early to find him. Presume Competence.
A text from Mr. Fixit: I'm at the pick up area, just waiting for him. 18 minutes before pickup time. My response: OK, let me know how it went as soon as you can. Presume competence.
Finally: He's fine. They said he did fine. Lots of watching, but he's happy. Presume Competence.
He did it! In his own way, watching; but he did it. He didn't get lost, there were no meltdowns, or tears, or accidents, or calls to mom. And as the week progresses and he gets more comfortable, there will be more participation and less watching. All in his own time. Presume competence.
Presuming competence may be good for Bambam, but it just might kill me. At the very least it will turn my hair completely grey and give me an ulcer. I know in my heart of hearts that in order for him to grow we must give him opportunities to learn, sometimes even nudge him along the the path to his full potential. But honestly, this is the hardest thing I've ever had to do. Presume competence. It sounds great, has a nice ring to it. But I think there may be days when I hate those 2 words.
Tuesday, June 18, 2013
Summer...Again
Summers are always hard with Bambam. Both Mr. Fixit and I work. Granted I only work part-time, but still need some sort of day care for about 25 hours a week. In the past we have muddled through with a hodge podge of grandparents, brother's help, and a very flexible work schedule for both myself and Mr. Fixit.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
Sunday, May 26, 2013
Living in Fear, the Sequel
I wrote a blog the other day about living in fear. Here's is a perfect example of what I was talking about:
Bambam had practice tonight for Special Olympics golf. He LOVES golf. He would spend all day hitting golf balls, to the point of blisters on his hands. But I'm getting off topic.
Tonight as he was practicing on the driving range, he was hitting his driver. (quite well I might add) and in one swing, the head of his club flew off and landed about 100 feet out into the driving range. He glanced at me for maybe a nono-second before bolting out onto the driving range yelling "I need dat, I need dat! Dat mine!". And my heart about stopped.
Lined up across the driving range were about 20 other special olympians, all adults, hitting balls with various clubs right in the direction of my son. The coaches all started yelling "Stop! No one hit any balls! Stop hitting balls!" as I was sprinting towards Bambam. By the time I got to him, he had the club head firmly in his grib and was looking at me wondering why everyone was freaking out. That kid is fast.
As I dragged him off the range I tried to explain that he couldn't run out there, it was dangerous, he could get hit by golf balls and get hurt. But I'm not sure he understood. He did finally repeat "doan go out dere?" No son, don't go out there.
And people wonder why I have grey hair. I think I need a drink.
Bambam had practice tonight for Special Olympics golf. He LOVES golf. He would spend all day hitting golf balls, to the point of blisters on his hands. But I'm getting off topic.
Tonight as he was practicing on the driving range, he was hitting his driver. (quite well I might add) and in one swing, the head of his club flew off and landed about 100 feet out into the driving range. He glanced at me for maybe a nono-second before bolting out onto the driving range yelling "I need dat, I need dat! Dat mine!". And my heart about stopped.
Lined up across the driving range were about 20 other special olympians, all adults, hitting balls with various clubs right in the direction of my son. The coaches all started yelling "Stop! No one hit any balls! Stop hitting balls!" as I was sprinting towards Bambam. By the time I got to him, he had the club head firmly in his grib and was looking at me wondering why everyone was freaking out. That kid is fast.
As I dragged him off the range I tried to explain that he couldn't run out there, it was dangerous, he could get hit by golf balls and get hurt. But I'm not sure he understood. He did finally repeat "doan go out dere?" No son, don't go out there.
And people wonder why I have grey hair. I think I need a drink.
Sunday, May 19, 2013
30 Days of Autism
I'm often asked what its like to raise an autistic child. There is no quick way to answer that question. The answer I give probably depends on the day. Each day, week, month is different. I'm never sure what to expect. As a way to answer the question, I've decided to write something everyday for a month about what its like raising my autistic child. Autism Awareness month seemed like an appropriate month for this project. So, here goes...
April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.
April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.
April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.
April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.
April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?
April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)
April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again.
April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.
April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow.
April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.
April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.
April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.
April 13: We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.
April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.
April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.
April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."
April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?
April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.
April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.
April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.
April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.
April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.
April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea. Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....
April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.
April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.
April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.
April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.
April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.
April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.
Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late. :)
April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.
April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.
April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.
April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.
April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?
April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)
April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again.
April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.
April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow.
April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.
April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.
April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.
April 13: We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.
April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.
April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.
April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."
April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?
April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.
April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.
April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.
April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.
April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.
April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea. Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....
April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.
April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.
April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.
April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.
April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.
April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.
Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late. :)
Thursday, March 21, 2013
Miracles
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.
I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.
But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.
But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular. Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
Indeed.
I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.
I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.
But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.
But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular. Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
Indeed.
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