It's 4:30 in the morning. And I am not asleep. I've been awake since 2:30 just laying in bed. This is not good. I need to sleep. I cannot be an effective mama without adequate rest. Not to mention that I may never get over this viral crud that is now in week number three. Regardless, my body is wide awake, my brain won't stop. Perhaps writing will help clear my head.
It's been a tough transition into fall. There is nothing new about this, we go through this every year. But often times, in the midst of the hard, there is awesomeness. A little beacon of light. This year it came at The Boy's IEP meeting.
For the first time this year, we had The Boy attend his IEP meeting. This is something I've been thinking about for the past couple of years. These meetings are for and about him. What he needs, how we can all help him become the best possible version of himself. Who better to tell us than him?
So I approached his teacher (MB) with the idea. And she was completely on board. We devised a plan that we thought would work.
The Boy is not capable of attending a 1-2 hour long meeting hammering out the nitty gritty of his goals for the year, how they will be measured, how they will be reported, what accommodations and supports will be in place for each one, how much speech therapy, occupational therapy, social skills training he receives each week, when he will be in his GenEd vs SpEd classes etc, etc, etc. But we did want to introduce him to the process, let him know that this entire team of people (10 in all) are here for him. To help him and encourage him and work with him to optimize his growth and development.
But, more importantly, we wanted him to learn that his input was valuable and that we wanted to hear it. These are the seeds of self advocacy.
So we decided that he would attend the first part of the meeting. He would listen as we went around the table, each of us talking about the strengths we see in him, what we enjoy most about him. And then we would begin by asking him what are his 3 favorite things at school, what is he good at. Then asking what is hard for him. The plan was for him to be in the meeting for about 15 minutes.
I wasn't sure how this would go. Meetings are not really his thing. And with his language skills...well sometimes he answers a question and sometimes he doesn't. Sometimes his answer has nothing to do with the question. Language is a huge challenge for him.
The night before the meeting we told him about it and that MB would ask him these questions. We didn't get much of a response about the questions, he just kept talking about going to a meeting. I had no idea what to expect the next afternoon.
At 3:30 the next day we sat around a kid size table in kid size chairs, introduced ourselves to the new comers, and talked about his strengths; there are many. He appeared to not be listening, but I know better. Then MB asked him what was easy for him at school, what were his 3 favorite things.
He immediately answered "PE!"
Pause.
"And recess."
Much longer pause while thankfully everyone waited silently.
"And um, um ... and um ... LUNCH!"
And everyone chuckled just a little. Because yes, these ARE the areas where he does not struggle, or struggles the least. And, what 9 year old boy doesn't love lunch and recess? We were perhaps looking for more academic answers, but his answers were very true to him. And on topic.
MB then asked him what was difficult for him, what was hard for him to do. I'll be honest, I wasn't sure we were going to get an answer here. And if we did, I thought for sure it would be writing, or worksheets, or the generic "school work." Because even though he is making progress in these areas, it IS difficult and arduous for him. He tells me over and over when we do homework that he can't do it, it's too hard. This is what I expected.
But here is what he said: "real-a-loud and closing".
Read-a-loud
Closing
Activities where he is not actively working, but where he has to sit still and quiet, listening. And he didn't just say read-a-loud and closing. He also said "I'm not good at it".
Wow. Just, wow. I mean...wow!
That one answer told me that he is so much more self aware than any of us have given him credit for.
That boy is what my mom would call a "wiggle worm." (Is that really a term or just my mom?) I don't know if it's due to the ADHD or the autism or just being a boy, but he is constant motion. And he talks incessantly. The only time he is still and quiet at home is when he is asleep. That is it. Even laying in bed trying to go to sleep he is moving all over the bed and talking to himself. Out loud. When he watches a movie he is acting it out at the same time. He is incapable of being still and quiet.
Read-a-loud and closing. I'm not good at it.
He knows. He knows where his strengths and weaknesses are. He may not be able to articulate I can't sit still and quiet, it's impossible for me. But he can say he's not good at read-a-loud and closing. He's telling us the same thing the only way he can.
As an outsider watching this boy run and jump and tumble through his days, it would appear that he is unaware of almost everything. But I know better. I see it in his eyes. That boy misses nothing. He sees everything and he hears everything. It is all going into that amazing brain of his. And it is all being stored there. And when the time is right, it will come out.
Read-a-loud and closing. I'm not good at it.
Had anyone ever asked him before what was hardest about school? He's now telling us it's having to sit still and quiet. It not only makes read-a-loud and closing hard, but also schoolwork. When he can't move and be big, when it takes all his energy and mental capacity to sit still in a chair, there is not much left over to concentrate on reading or worksheets. His answer says so much more than just read-a-loud and closing.
He knows. He is telling us. We need to make sure we are listening.
My Side of Typical
Monday, October 26, 2015
Wednesday, October 21, 2015
Tuesday, October 13, 2015
The Mama Well
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.
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.
Thursday, October 1, 2015
The Change in Fall
I used to love September. Back to school. Crisp fall days. Leaves changing colors, swirling and drifting to the ground. Football games. Hot chocolate. Fires in the Fireplace. Boots and jackets. I. Loved. Fall. Everything fall. Even rainy, stormy, thunderous nights.
But the past several years have changed me. Fall has become brutal. Every year, September slithers into our house like a serpent, stealing the calm, leaving an enormous amount of angst in its wake. And I watch helplessly as my sweet, joyous, fun-filled boy turns into a shell of anxiety.
Every year we try to get ahead of it. We try to prepare for it. We work with him on what is coming, how to cope with it. And although it is getting better (slowly, incrementally), it is still BRUTAL. B. R. U. T. A. L. And I am out of ideas. I don't know how to make it better for him. At this point all we can do is power through. Get up every morning (hoping we've gotten some sleep), put one foot in front of the other and power through like the bulldozer he desperately loves.
Its not school. He loves school, asks to go to school all summer. I think the only reason we survive September is because of school. The consistency, the routine. The teachers, his classmates and friends. These all help, even as they too take a toll on his body. Working hard for hours at school is taxing after a summer of running, jumping, playing, swimming... Although school is not the reason for the anxiety, it does add to his inability to mitigate it.
The cause of his anxiety falls squarely on the shoulders of the change in seasons. The days getting shorter, the weather getting cooler, the clouds rolling in. Its now dark before bedtime. He does not like the dark. It seems to accentuate his already acute hearing. And every little sound triggers anxiety in his body already tense and hyper alert. I cannot tell you how many times an evening I am asked "what's that noise?" It's the refrigerator, or the dishwasher, or the dryer. It's a car outside, a jet passing overhead, the wind in the trees. It's the furnace kicking on for the first time since summer, the ice maker releasing ice cubes, Daddy working in the shop, the floor boards creaking. Noises he didn't even notice during the summer. Now they can cause a meltdown.
The other night as I was putting him to bed he kept saying "no red, no red!" I had no idea what he was talking about. What red? Red what? "Red in the window" he said. "No red in the window." Red in the window? It took a few minutes, but then we realized he'd seen brake lights from a passing car shining in his window. Add one more trigger to the ever growing list.
Fall means occasional rains, which means (at least in his mind) that there might be thunder. And thunder terrifies him. I try, unsuccessfully, to reassure him as he stands at the windows, talking to the clouds, whispering, pleading "no thunder, no thunder", his whole body stiff with tension. I cannot provide the comfort he so desperately needs.
Some days he cries for hours, literally hours. Inconsolable. Little things that haven't bothered him in years can set him off. If I leave the house he cries the whole time I'm gone. He doesn't wander more than 2 feet from me. Even though (at least from my perspective) I cannot provide comfort; he seeks me out, needs to be near me. I am housebound. And helpless. I want so badly to make it better for him. To assure him that it is alright. And nothing I do or say seems to make it any better. Just time. Time for him to get accustomed to the darkness, the coolness, the clouds.
He does eventually adjust. But in the midst of the angst, it feels like it will go on forever. So we will continue to bulldoze through September. And perhaps sometime in the near future I can fall in love with October. Pumpkin patches and chili. Trick or treating and bobbing for apples. October may become my new favorite month.
But the past several years have changed me. Fall has become brutal. Every year, September slithers into our house like a serpent, stealing the calm, leaving an enormous amount of angst in its wake. And I watch helplessly as my sweet, joyous, fun-filled boy turns into a shell of anxiety.
Every year we try to get ahead of it. We try to prepare for it. We work with him on what is coming, how to cope with it. And although it is getting better (slowly, incrementally), it is still BRUTAL. B. R. U. T. A. L. And I am out of ideas. I don't know how to make it better for him. At this point all we can do is power through. Get up every morning (hoping we've gotten some sleep), put one foot in front of the other and power through like the bulldozer he desperately loves.
Its not school. He loves school, asks to go to school all summer. I think the only reason we survive September is because of school. The consistency, the routine. The teachers, his classmates and friends. These all help, even as they too take a toll on his body. Working hard for hours at school is taxing after a summer of running, jumping, playing, swimming... Although school is not the reason for the anxiety, it does add to his inability to mitigate it.
The cause of his anxiety falls squarely on the shoulders of the change in seasons. The days getting shorter, the weather getting cooler, the clouds rolling in. Its now dark before bedtime. He does not like the dark. It seems to accentuate his already acute hearing. And every little sound triggers anxiety in his body already tense and hyper alert. I cannot tell you how many times an evening I am asked "what's that noise?" It's the refrigerator, or the dishwasher, or the dryer. It's a car outside, a jet passing overhead, the wind in the trees. It's the furnace kicking on for the first time since summer, the ice maker releasing ice cubes, Daddy working in the shop, the floor boards creaking. Noises he didn't even notice during the summer. Now they can cause a meltdown.
The other night as I was putting him to bed he kept saying "no red, no red!" I had no idea what he was talking about. What red? Red what? "Red in the window" he said. "No red in the window." Red in the window? It took a few minutes, but then we realized he'd seen brake lights from a passing car shining in his window. Add one more trigger to the ever growing list.
Fall means occasional rains, which means (at least in his mind) that there might be thunder. And thunder terrifies him. I try, unsuccessfully, to reassure him as he stands at the windows, talking to the clouds, whispering, pleading "no thunder, no thunder", his whole body stiff with tension. I cannot provide the comfort he so desperately needs.
Some days he cries for hours, literally hours. Inconsolable. Little things that haven't bothered him in years can set him off. If I leave the house he cries the whole time I'm gone. He doesn't wander more than 2 feet from me. Even though (at least from my perspective) I cannot provide comfort; he seeks me out, needs to be near me. I am housebound. And helpless. I want so badly to make it better for him. To assure him that it is alright. And nothing I do or say seems to make it any better. Just time. Time for him to get accustomed to the darkness, the coolness, the clouds.
He does eventually adjust. But in the midst of the angst, it feels like it will go on forever. So we will continue to bulldoze through September. And perhaps sometime in the near future I can fall in love with October. Pumpkin patches and chili. Trick or treating and bobbing for apples. October may become my new favorite month.
Wednesday, September 23, 2015
Thursday, September 10, 2015
Four Avengers
With Halloween coming up next month, all the stores have their decorations out already. This has lead to discussions with The Boy about what he wants to be for Halloween. He started out saying that he wanted to be the Avengers. To which I said, "Sweetpea there are four of them*, you can't be all four. Which one do you want to be?" He promply replied with "I want to be four!" Sigh.
Over the next several days we had this same conversation several times:
The Boy: I want to be four for Halloween!
Me: You can't be all four Avengers, you have to pick one.
And he would look at me like I was growing a second head before he ran off to play.
Having grown weary of this conversation, I finally said to him: "I don't know who Four is, can you tell me:" And he gleefully told me "He is an Avenger. And he has a hammer!"
Thor. The child has been saying Thor.
I'm sure that child thinks his mother is a complete idiot.
*I know there are more than 4 Avengers. But on the cartoon he watches, there are 4 of them.
Over the next several days we had this same conversation several times:
The Boy: I want to be four for Halloween!
Me: You can't be all four Avengers, you have to pick one.
And he would look at me like I was growing a second head before he ran off to play.
Having grown weary of this conversation, I finally said to him: "I don't know who Four is, can you tell me:" And he gleefully told me "He is an Avenger. And he has a hammer!"
Thor. The child has been saying Thor.
I'm sure that child thinks his mother is a complete idiot.
*I know there are more than 4 Avengers. But on the cartoon he watches, there are 4 of them.
Friday, August 21, 2015
If They Would Just Parent
This article (http://www.cbsnews.com/news/kentucky-officer-handcuffed-mentally-disabled-kids-as-punishment-lawsuit-says/) is making the rounds on social media. It is all over my Facebook page and on every special needs/autism pages I visit. I've read the article, but can't bring myself to watch the accompanying video. It is too horrifying for me. I am shocked that this just keeps happening. Over and over and over again. From Special Ed teachers hanging kids upside down in garbage cans to kids being locked in "safe rooms" isolated alone for hours at a time. When will this stop? How is it that the children that need the most care and understanding seemingly receive the least.
I rarely do, but this time I shared the article on my personal FB feed with the comment that although I didn't know the specifics of this case, I couldn't think of a reason a 50 pound 8 year old would need to be handcuffed. Ever. Especially not one with special needs. It is just not appropriate. As you can imagine, I got comments. And not surprising, the ones that bother me the most are the ones that imply kids just need more guidance and discipline. If parents would do their job, this wouldn't be necessary.
I'm the first to admit that yes, there are unfortunately kids out there who are not being parented or disciplined. There could be any number of reasons for this and I try (now) not to judge. I'm sure it does make our educators jobs that much tougher. It's probably not easy to be a teacher. But lack of discipline is not always the reason for these behaviors.
I used to be one of those people who blamed poor behavior on lack of parenting and discipline. I'm ashamed to admit that I have judged numerous parents and deemed them unworthy, doing their kids a disservice. I used to not truly believe that ADHD was a valid diagnosis, I said that I would never "drug" my child. The list of things I used to say goes on and on.
But God has a way of opening our hearts and teaching us the lessons we need to learn. And in my case He did so with the beautiful gift that is my youngest son. No one who knows me would accuse me of not providing guidance and discipline to my children. I parent. Certainly not perfectly, but I really try to do my best to raise healthy, responsible, kind humans. And even with my best efforts, The Boy still has occasional "behavior problems".
Children with autism or ADHD or other special needs can't always control their behavior. When they lash out, it's not a choice. It's not an act of defiance. In the case of The Boy, it's usually because he's become completely overwhelmed, has basically shut down and his "fight or flight" response has been triggered. Thankfully, he is not a runner, but he fights (not so thankfully).
It is hard for me to admit that my child has punched an educational aid breaking her nose. He has thrown a chair into a smart board, breaking the smart board. Thankfully these incidents are few and far between. And both these incidents happened several years ago. Back when his expressive language was limited and he struggled to communicate. We work with him constantly on appropriate behaviors, how to mitigate his challenges, how to find his voice of self advocacy, how to use his words to express his feelings. But even though we work with him constantly, we still occasionally struggle with behaviors.
Just last week we were out and about when a nearby baby started crying. I don't know why, but a crying baby or toddler is a trigger for The Boy. If you know, you can see the reaction. His head jerks up, his eyes get huge, his whole body gets stiff, you can see his mind shut down and his fight or flight response take over. He loses his language. And in the case last week, where I didn't notice the cries and didn't prepare for the response, he ran straight to me. And kicked me as hard as he could. It hurt like crazy. It took everything I had, but I didn't react. It took me about a nano second to realize what happened. So I again tried to work with him on what to do instead. I reminded him that he cannot kick or hit, that he needs to try and use his words: Baby crying. Too loud. Scares me. Leave. Go home. Short, brief statements of self advocacy. Before he can learn to process the cries and tolerate them, he has to know he can escape them and feel safe. Only after he feels safe can we talk about why the baby cries. He might be hungry or cold. The baby can't talk so he cries to tell his mommy what he needs. His mommy will help him and then the cries will stop. All of this over and over and over again with the hope that eventually he will be able to process the crying, advocate for what he needs and not have to fight his way through it. But it takes tons and tons (and tons) of patience and consistency and care and understanding by everyone who interacts with him on a regular basis. What he doesn't need is to be handcuffed by a big policeman with little or no training in how to respond to a child with special needs.
That would simply further traumatize my child. And here is what happens when my child is severely traumatized. He doesn't forget. Ever. And he will never return to the place of the trauma, or any place similar. He simply would not go to school any more. And every time he saw a police officer, his fight or flight response would trigger. You may think I'm exaggerating a bit. But I assure you I am not.
Three years ago we attended a street fair. These are difficult for The Boy as they are generally loud, crowded, and a little crazy. But he was holding it together. In the middle of the fair, he had an encounter that for whatever reason sent him over the edge. He immediately started to meltdown and insisted on going home. We left. Ever since then, he will not go to the location of that fair. He simply won't. Even when there is no fair. And he won't go to a street fair anywhere. If he sees pop up tents, his fight or flight response immediately engages. His anxiety goes through the roof and he begins to meltdown. Three years later we are still dealing with this. Imagine if you handcuffed this child at school, in the throws of a meltdown. He would never forget it. For the rest of ever. It would make things a thousand times worse.
I am so very thankful that our school understands this. That when The Boy is in the middle of a meltdown and trying to fight his way out (literally), they don't call the police. They remove him from the situation, take him someplace safe (usually outside) to work through it, and they call me to come take him home for the day. I'm doubly thankful that his hasn't happened since first grade. But there are no guarantees that it won't happen again some time in the future.
So when I read these stories, yes I take them personally. When I see that 50 pound 8 year old sitting in a chair facing the corner with handcuffs on his biceps, I see my child. And when I hear someone say that all this could be avoided if the child's parents would just do their job, well honestly I'm almost speechless. Almost. But not quite, or I wouldn't be writing about it.
I have never parented with such dedication as I am right now. My older boys did not take nearly as much time, effort, patience, consistency, love, care, understanding... The list goes on and on. To hear someone say that these situations could be avoided if parents would do their job just crushes me. I don't know how to do this any better. I am giving 100% every day. And to have someone negate that in one simple sentence is crushing. I would invite any one of them into my life for just one day. Just one day. I guarantee it would change their perspective forever.
Where am I going with this? Its really 2 fold. Please, please, please don't be so quick to judge. We do not know all the specifics of this case, we rarely do. This boy's parents may be doing everything they know how to help him. But it is a long, slow process. Or, they may be absent, disengaged parents who are over burdened with no supports and burned out. My point is WE DO NOT KNOW. And I, for one, am not going to pass judgement on them. And even if they are disengaged parents "not doing their job", is it the fault of the boy? Does he deserve to be in handcuffs as a result of poor parenting, something he has no control over? No matter the circumstances, I would argue that what he needs is care and understanding and a safe place to calm down. He needs help not handcuffs.
Secondly, we desperately need more advocacy and training. Teachers, administrators, and emergency response people (just to name a few) need training. Even if a child does not have special needs, the techniques used to defuse a meltdown can be used to help a "typical" child calm down. Training and education would benefit everyone.
And I stand by my original statement. I can't think of a reason a 50 pound 8 year old would ever need to be handcuffed.
I rarely do, but this time I shared the article on my personal FB feed with the comment that although I didn't know the specifics of this case, I couldn't think of a reason a 50 pound 8 year old would need to be handcuffed. Ever. Especially not one with special needs. It is just not appropriate. As you can imagine, I got comments. And not surprising, the ones that bother me the most are the ones that imply kids just need more guidance and discipline. If parents would do their job, this wouldn't be necessary.
I'm the first to admit that yes, there are unfortunately kids out there who are not being parented or disciplined. There could be any number of reasons for this and I try (now) not to judge. I'm sure it does make our educators jobs that much tougher. It's probably not easy to be a teacher. But lack of discipline is not always the reason for these behaviors.
I used to be one of those people who blamed poor behavior on lack of parenting and discipline. I'm ashamed to admit that I have judged numerous parents and deemed them unworthy, doing their kids a disservice. I used to not truly believe that ADHD was a valid diagnosis, I said that I would never "drug" my child. The list of things I used to say goes on and on.
But God has a way of opening our hearts and teaching us the lessons we need to learn. And in my case He did so with the beautiful gift that is my youngest son. No one who knows me would accuse me of not providing guidance and discipline to my children. I parent. Certainly not perfectly, but I really try to do my best to raise healthy, responsible, kind humans. And even with my best efforts, The Boy still has occasional "behavior problems".
Children with autism or ADHD or other special needs can't always control their behavior. When they lash out, it's not a choice. It's not an act of defiance. In the case of The Boy, it's usually because he's become completely overwhelmed, has basically shut down and his "fight or flight" response has been triggered. Thankfully, he is not a runner, but he fights (not so thankfully).
It is hard for me to admit that my child has punched an educational aid breaking her nose. He has thrown a chair into a smart board, breaking the smart board. Thankfully these incidents are few and far between. And both these incidents happened several years ago. Back when his expressive language was limited and he struggled to communicate. We work with him constantly on appropriate behaviors, how to mitigate his challenges, how to find his voice of self advocacy, how to use his words to express his feelings. But even though we work with him constantly, we still occasionally struggle with behaviors.
Just last week we were out and about when a nearby baby started crying. I don't know why, but a crying baby or toddler is a trigger for The Boy. If you know, you can see the reaction. His head jerks up, his eyes get huge, his whole body gets stiff, you can see his mind shut down and his fight or flight response take over. He loses his language. And in the case last week, where I didn't notice the cries and didn't prepare for the response, he ran straight to me. And kicked me as hard as he could. It hurt like crazy. It took everything I had, but I didn't react. It took me about a nano second to realize what happened. So I again tried to work with him on what to do instead. I reminded him that he cannot kick or hit, that he needs to try and use his words: Baby crying. Too loud. Scares me. Leave. Go home. Short, brief statements of self advocacy. Before he can learn to process the cries and tolerate them, he has to know he can escape them and feel safe. Only after he feels safe can we talk about why the baby cries. He might be hungry or cold. The baby can't talk so he cries to tell his mommy what he needs. His mommy will help him and then the cries will stop. All of this over and over and over again with the hope that eventually he will be able to process the crying, advocate for what he needs and not have to fight his way through it. But it takes tons and tons (and tons) of patience and consistency and care and understanding by everyone who interacts with him on a regular basis. What he doesn't need is to be handcuffed by a big policeman with little or no training in how to respond to a child with special needs.
That would simply further traumatize my child. And here is what happens when my child is severely traumatized. He doesn't forget. Ever. And he will never return to the place of the trauma, or any place similar. He simply would not go to school any more. And every time he saw a police officer, his fight or flight response would trigger. You may think I'm exaggerating a bit. But I assure you I am not.
Three years ago we attended a street fair. These are difficult for The Boy as they are generally loud, crowded, and a little crazy. But he was holding it together. In the middle of the fair, he had an encounter that for whatever reason sent him over the edge. He immediately started to meltdown and insisted on going home. We left. Ever since then, he will not go to the location of that fair. He simply won't. Even when there is no fair. And he won't go to a street fair anywhere. If he sees pop up tents, his fight or flight response immediately engages. His anxiety goes through the roof and he begins to meltdown. Three years later we are still dealing with this. Imagine if you handcuffed this child at school, in the throws of a meltdown. He would never forget it. For the rest of ever. It would make things a thousand times worse.
I am so very thankful that our school understands this. That when The Boy is in the middle of a meltdown and trying to fight his way out (literally), they don't call the police. They remove him from the situation, take him someplace safe (usually outside) to work through it, and they call me to come take him home for the day. I'm doubly thankful that his hasn't happened since first grade. But there are no guarantees that it won't happen again some time in the future.
So when I read these stories, yes I take them personally. When I see that 50 pound 8 year old sitting in a chair facing the corner with handcuffs on his biceps, I see my child. And when I hear someone say that all this could be avoided if the child's parents would just do their job, well honestly I'm almost speechless. Almost. But not quite, or I wouldn't be writing about it.
I have never parented with such dedication as I am right now. My older boys did not take nearly as much time, effort, patience, consistency, love, care, understanding... The list goes on and on. To hear someone say that these situations could be avoided if parents would do their job just crushes me. I don't know how to do this any better. I am giving 100% every day. And to have someone negate that in one simple sentence is crushing. I would invite any one of them into my life for just one day. Just one day. I guarantee it would change their perspective forever.
Where am I going with this? Its really 2 fold. Please, please, please don't be so quick to judge. We do not know all the specifics of this case, we rarely do. This boy's parents may be doing everything they know how to help him. But it is a long, slow process. Or, they may be absent, disengaged parents who are over burdened with no supports and burned out. My point is WE DO NOT KNOW. And I, for one, am not going to pass judgement on them. And even if they are disengaged parents "not doing their job", is it the fault of the boy? Does he deserve to be in handcuffs as a result of poor parenting, something he has no control over? No matter the circumstances, I would argue that what he needs is care and understanding and a safe place to calm down. He needs help not handcuffs.
Secondly, we desperately need more advocacy and training. Teachers, administrators, and emergency response people (just to name a few) need training. Even if a child does not have special needs, the techniques used to defuse a meltdown can be used to help a "typical" child calm down. Training and education would benefit everyone.
And I stand by my original statement. I can't think of a reason a 50 pound 8 year old would ever need to be handcuffed.
Thursday, August 6, 2015
All My Free Time
I work part-time. It's great. The best of both worlds for me. I cannot be a full time stay at home mom. I tried that once and just about went stir crazy. I need some adult interaction and I need to use my brain just a little bit every day. So for me, part time is the answer. This is what works FOR ME. I believe we are all created differently and what works for each of us is different. This is not a post about SAHM's vs working mom's. I really don't care what you do as long as it works for you and your kids. So lets all just do what works for us and not worry about what our neighbor is doing. Now, back to my post.
Since I work part-time, I sometimes get the what do you do with all your free time? Or, what do you do when you are not working? Or good for you, you have some free time to relax. And I laugh and laugh and laugh. Here is an example of what I do in my "free me time".
The Boy had a med check appointment with his doctor last Tuesday. Yes, we use medication in our multifaceted arsenal of tools we utilize to help The Boy mitigate his many challenges. Don't judge. Medication has changed his life, for the better. He cannot function without it. So, we had a med check last Tuesday, like we do every three months. And I left with 3 months worth of scripts for his "controlled substance" med. I went directly to the pharmacy and dropped them off.
Upon picking them up, one of them had a sticker on it saying the pills may look different, but it is the same medication. The pharmacy had changed generics. Not a big deal, I really didn't think much of it. I proceeded to give The Boy his afternoon meds from this new bottle.
After three days it became apparent that this new generic was not working for him. He was a disaster. That child has the most sensitive system I've ever been privileged to witness. He reacts to so many things, one of which is red dye. And the new generic pills were a very, very, very light orange. I should have realized it before giving any to him. But no, it took us 3 days to put the pieces together. Another mommy fail. Sigh.
So, off to the pharmacy I go with the offending pills in hand. After a long discussion with the pharmacist (who luckily didn't poohoo me when I said The Boy doesn't tolerate red dye) he indicated they could order the previous generics and note in his file that he could only take that brand. BUT, in order to give us a new bottle of the old generics, he would need a new script from the doctor since its a controlled substance. Okay.
Phone call #1 to the doctor's office. He is on vacation. It is Friday. I need to get this handled today. Phone call #2 from the nurse for the on call doctor who doesn't know me or my child and I'm sure is questioning why I'm asking for another script for a controlled substance that I just got filled. I repeat my story for the third time today. Phone call #3 from the on call doctor where I repeat my story yet again. And this time I offer to give him the bottle of offending pills if he will just please give us a new script. Phone call #4, on call doctor calls the pharmacy to verify my story with the pharmacist. Phone call #5 on call doctor calls me back asking more questions and finally agrees to write a new script, which I have to pick up in person and hand deliver to the pharmacy. They cannot send a script for a controlled substance electronically.
So, off to the pharmacy I go all pleased with myself that I've gotten this handled in just half a day, 5 phone calls and 2 trips to the pharmacy. Go mom! Not so fast mom. The insurance companies (both of them) refuse to pay for a prescription they've just paid for 3 days ago. I understand this. But this is not my first rodeo people. I know they can and do make exceptions. And for $250 I will make that extra phone call and plead for an exception. Back home I go, no prescription in hand.
Phone call #6, I talk to our primary insurance company. The lady is very nice, but cannot authorize a prescription override. She leaves a message with the correct person to call me. Phone call #7, said person calls me and indicates she has to talk to the pharmacy before she can authorize an override. I ask her to please call me back when she is done so I know when to go pick up the meds. 2 hours later I still haven't received a phone call. We are quickly coming up on the afternoon time when The Boy needs to take these meds. Phone call #8, I call said person back asking about progress. She says she hasn't gotten to it yet, its not considered an emergency. At which point I just about loose it and hang up.
As luck would have it, Mr. Fixit walked in from work right then. When I can't get something done, Mr. Fixit can. He has ... um... different ways of persuasion. Phone call #9, he calls said person back and persuades her that it is an emergency and we need an OK within 30 minutes. (I think there was a discussion about what happens if The Boy doesn't take this med on time and a threat to drop him off at said person's house tonight for her to witness first hand) Whatever, it worked.
8 hours after I first walked into the pharmacy that morning, after 9 phone calls, 1 trip to the doctor's office, and three trips to the pharmacy, Mr. Fixit came home with the correct generic meds. He did end up having to pay the $10 copay as neither one of us was willing to deal with the secondary insurance who usually picks up the copay. It just wasn't worth any more phone calls to save the $10.
So, this is what I do in my down time. Seriously, I couldn't make this stuff up if I tried.
Since I work part-time, I sometimes get the what do you do with all your free time? Or, what do you do when you are not working? Or good for you, you have some free time to relax. And I laugh and laugh and laugh. Here is an example of what I do in my "free me time".
The Boy had a med check appointment with his doctor last Tuesday. Yes, we use medication in our multifaceted arsenal of tools we utilize to help The Boy mitigate his many challenges. Don't judge. Medication has changed his life, for the better. He cannot function without it. So, we had a med check last Tuesday, like we do every three months. And I left with 3 months worth of scripts for his "controlled substance" med. I went directly to the pharmacy and dropped them off.
Upon picking them up, one of them had a sticker on it saying the pills may look different, but it is the same medication. The pharmacy had changed generics. Not a big deal, I really didn't think much of it. I proceeded to give The Boy his afternoon meds from this new bottle.
After three days it became apparent that this new generic was not working for him. He was a disaster. That child has the most sensitive system I've ever been privileged to witness. He reacts to so many things, one of which is red dye. And the new generic pills were a very, very, very light orange. I should have realized it before giving any to him. But no, it took us 3 days to put the pieces together. Another mommy fail. Sigh.
So, off to the pharmacy I go with the offending pills in hand. After a long discussion with the pharmacist (who luckily didn't poohoo me when I said The Boy doesn't tolerate red dye) he indicated they could order the previous generics and note in his file that he could only take that brand. BUT, in order to give us a new bottle of the old generics, he would need a new script from the doctor since its a controlled substance. Okay.
Phone call #1 to the doctor's office. He is on vacation. It is Friday. I need to get this handled today. Phone call #2 from the nurse for the on call doctor who doesn't know me or my child and I'm sure is questioning why I'm asking for another script for a controlled substance that I just got filled. I repeat my story for the third time today. Phone call #3 from the on call doctor where I repeat my story yet again. And this time I offer to give him the bottle of offending pills if he will just please give us a new script. Phone call #4, on call doctor calls the pharmacy to verify my story with the pharmacist. Phone call #5 on call doctor calls me back asking more questions and finally agrees to write a new script, which I have to pick up in person and hand deliver to the pharmacy. They cannot send a script for a controlled substance electronically.
So, off to the pharmacy I go all pleased with myself that I've gotten this handled in just half a day, 5 phone calls and 2 trips to the pharmacy. Go mom! Not so fast mom. The insurance companies (both of them) refuse to pay for a prescription they've just paid for 3 days ago. I understand this. But this is not my first rodeo people. I know they can and do make exceptions. And for $250 I will make that extra phone call and plead for an exception. Back home I go, no prescription in hand.
Phone call #6, I talk to our primary insurance company. The lady is very nice, but cannot authorize a prescription override. She leaves a message with the correct person to call me. Phone call #7, said person calls me and indicates she has to talk to the pharmacy before she can authorize an override. I ask her to please call me back when she is done so I know when to go pick up the meds. 2 hours later I still haven't received a phone call. We are quickly coming up on the afternoon time when The Boy needs to take these meds. Phone call #8, I call said person back asking about progress. She says she hasn't gotten to it yet, its not considered an emergency. At which point I just about loose it and hang up.
As luck would have it, Mr. Fixit walked in from work right then. When I can't get something done, Mr. Fixit can. He has ... um... different ways of persuasion. Phone call #9, he calls said person back and persuades her that it is an emergency and we need an OK within 30 minutes. (I think there was a discussion about what happens if The Boy doesn't take this med on time and a threat to drop him off at said person's house tonight for her to witness first hand) Whatever, it worked.
8 hours after I first walked into the pharmacy that morning, after 9 phone calls, 1 trip to the doctor's office, and three trips to the pharmacy, Mr. Fixit came home with the correct generic meds. He did end up having to pay the $10 copay as neither one of us was willing to deal with the secondary insurance who usually picks up the copay. It just wasn't worth any more phone calls to save the $10.
So, this is what I do in my down time. Seriously, I couldn't make this stuff up if I tried.
Wednesday, August 5, 2015
Saturday, July 25, 2015
To Play or Not To Play
This morning as I was cleaning up the kitchen, I heard The Boy from the other room. Spider-Man and The Hulk were saving the day. Careening through the living room to save someone. I stopped what I was doing and I listened as he played. And I wanted to stop time. I wanted to freeze the moment and forever etch it into my memory. A moment in time to cherish.
You see, this was the boy who had no words until he was well over 3. The child who had no imaginative play at 6 years old. None. He simply did not know how to play. We spent hours, months even, trying to show him how to play.
Everyday after school we would take Mr. Potato Head and show The Boy how to build him. And then how to play with him. "Where would he go?" We would ask. And always the answer would be "da stowe". Because that's where we went, to the grocery store. The Boy had no imaginative play. Had no idea how to even begin. He only knew what we did, so Mr. Potato Head went to the store.
We painstakingly worked on it. Every day. We took Mr. Potato Head and the Mrs. and Jr. to the park and to the pool and to the library. All in our basement.
And slowly, over months, The Boy began to play with Mr. Potato Head and his family. Always the same scripts that we had played out for him before. Word for word, we would hear Papa, or Mama, or Jr jump in the pool or swing on the swings or buy a pear at the store. But it was a start. An attempt at imaginative play. Something he knew and was familiar with.
So we expanded our repertoire. We played with Buzz Lightyear and Woody, Dusty and Leadbottom and Ripslinger. What would they do, we asked. And the scripts came from the movie. Nothing novel. So we offered ideas, came up with our own storylines for these beloved characters. And he watched, enraptured with what his buddies were doing. And then he would mimic. And we were so excited. Because mimicking was a new skill. We celebrate the small things.
It took months. A year perhaps. But slowly, cautiously, he began to play. Novel story lines emerged. He expanded his characters to Paw Patrol, Jake and the Pirates, Doc McStuffins. All characters he knew from his shows. And then he began to play with stuffed animals and creates scenes outside in the yard. And when I stopped to watch or listen, I was amazed.
This is a gift: A non-verbal little boy who, a few years later, is now playing in the living room with Spider-Man and The Hulk, creating scenarios where the hero save the day. I want to remember this forever.
You see, this was the boy who had no words until he was well over 3. The child who had no imaginative play at 6 years old. None. He simply did not know how to play. We spent hours, months even, trying to show him how to play.
Everyday after school we would take Mr. Potato Head and show The Boy how to build him. And then how to play with him. "Where would he go?" We would ask. And always the answer would be "da stowe". Because that's where we went, to the grocery store. The Boy had no imaginative play. Had no idea how to even begin. He only knew what we did, so Mr. Potato Head went to the store.
We painstakingly worked on it. Every day. We took Mr. Potato Head and the Mrs. and Jr. to the park and to the pool and to the library. All in our basement.
And slowly, over months, The Boy began to play with Mr. Potato Head and his family. Always the same scripts that we had played out for him before. Word for word, we would hear Papa, or Mama, or Jr jump in the pool or swing on the swings or buy a pear at the store. But it was a start. An attempt at imaginative play. Something he knew and was familiar with.
So we expanded our repertoire. We played with Buzz Lightyear and Woody, Dusty and Leadbottom and Ripslinger. What would they do, we asked. And the scripts came from the movie. Nothing novel. So we offered ideas, came up with our own storylines for these beloved characters. And he watched, enraptured with what his buddies were doing. And then he would mimic. And we were so excited. Because mimicking was a new skill. We celebrate the small things.
It took months. A year perhaps. But slowly, cautiously, he began to play. Novel story lines emerged. He expanded his characters to Paw Patrol, Jake and the Pirates, Doc McStuffins. All characters he knew from his shows. And then he began to play with stuffed animals and creates scenes outside in the yard. And when I stopped to watch or listen, I was amazed.
This is a gift: A non-verbal little boy who, a few years later, is now playing in the living room with Spider-Man and The Hulk, creating scenarios where the hero save the day. I want to remember this forever.
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.
Friday, July 10, 2015
Our Kind of Inclusion
I posted the following on my facebook page during spring break:
"I'm a mom. I worry. Its what we do. And I'm really good at it. So when I dropped The Boy off at a new day camp on Tuesday, I worried all day at work. Until I picked him up, all smiles and exclaiming it was "way fun!"
But still, a little nagging part of me worries about how much more work he is for the camp leaders, how many accommodations he needs, is he participating, interacting, if he is disruptive, etc. I realize putting my special boy in "typical" activities takes extra effort on everyone's part. Yet, I am a firm believer that this is not only good for him but necessary, and that it is good for everyone else involved especially his peers. I do recognize what we are asking of others. It does take extra effort. I sometimes wonder how much I should be asking.
Today as I dropped The Boy off at camp, the leader followed me back out of the room to say and I quote "(The Boy) is awesome. We love having him, he is so much fun." It totally made my day. Guess I'm not asking too much.
Inclusion works people, it really does."
I'm a firm believer in inclusion. For obvious reasons. But I was also a firm believer even before the bonus that is The Boy arrived in our lives. Before any diagnosis or therapies or medications or special diets or IEP's or.... When the older boys were young, I believed in inclusion because I believe its just as beneficial for the "typical" kids as it is for the kids with special needs. I wanted my boys to understand that we are, each of us, a small part of the whole called humanity and all the parts are equally important. The whole cannot exist without each part. But, that is not what I started out to write about.
Its now summer, and The Boy attends day camp throughout most of the summer. This is for 2 reasons. Practically speaking, I work part time. So The Boy needs to do something for about 4-5 hours a day. But more importantly, it is our way of keeping him engaged with others. He doesn't qualify for ESY in our district (don't even get me started on this, I'll rant for hours) so we needed to come up with some way for him to continue interacting with peers, listening and following directions, taking turns, participating in group activities, etc. Skills that he needs during the school year but that can fall behind just being at home all summer. So, day camp it is.
As he gets older and progresses, and since the camps he's attended in the past have gone so well, we've been venturing into some new territory. Expanding his camp resume so to speak. And since he loves basketball, I signed him up for a basketball camp at our gym. It was just 4 days, with a small group of 4th and 5th graders. I knew it would be a stretch. When I say The Boy loves basketball, I mean he loves to shoot baskets. And he's a really good shot. He also enjoys dribbling and passing the ball. But a scrimmage or game? Well that's just a little too much for him....at least for now. Games move too fast, his processing time is slower and he struggles to keep up, gets overwhelmed, and shuts down. The result is him standing in the middle of the court not moving as the game takes place around him. He basically becomes an obstacle for the other players to avoid.
So why would I sign him up for a basketball camp you might ask. And that's a really good question. But as I said earlier, he loves basketball. And he loves our gym. And they love him. The person who runs the youth basketball program knows The Boy, his daughter and The Boy were in the same classroom for 3 years. When I talked to the program director about the possibility of including The Boy in the camp, he was all for it. And he knows what he's getting into.
The Boy learns a lot from observing. So we figured he would do the activities he could, hopefully attempt some new ones, and watch the ones he wasn't comfortable doing. You see, as far as I'm concerned, sometimes inclusions looks like all the kids doing the same activity. And sometimes it looks like a child doing a slightly modified activity. And sometimes it looks like a child watching his peers doing an activity he's not quite ready to participate in. And all of that is OK. It's not exclusion if the child is the one choosing not to participate in a particular activity. He gets just as much out of watching and learning and cheering for his peers as they scrimmage.
And maybe someday he'll be ready to be part of the scrimmage. Whether he is or not is totally up to him. It does not matter to me if he ever plays in a scrimmage or a game. But as long as he wants to, I will continue to give him opportunities to learn and grow and try. Because as my Dad told me growing up "How do you know that you can't unless you try. Again and again and again."
"I'm a mom. I worry. Its what we do. And I'm really good at it. So when I dropped The Boy off at a new day camp on Tuesday, I worried all day at work. Until I picked him up, all smiles and exclaiming it was "way fun!"
But still, a little nagging part of me worries about how much more work he is for the camp leaders, how many accommodations he needs, is he participating, interacting, if he is disruptive, etc. I realize putting my special boy in "typical" activities takes extra effort on everyone's part. Yet, I am a firm believer that this is not only good for him but necessary, and that it is good for everyone else involved especially his peers. I do recognize what we are asking of others. It does take extra effort. I sometimes wonder how much I should be asking.
Today as I dropped The Boy off at camp, the leader followed me back out of the room to say and I quote "(The Boy) is awesome. We love having him, he is so much fun." It totally made my day. Guess I'm not asking too much.
Inclusion works people, it really does."
I'm a firm believer in inclusion. For obvious reasons. But I was also a firm believer even before the bonus that is The Boy arrived in our lives. Before any diagnosis or therapies or medications or special diets or IEP's or.... When the older boys were young, I believed in inclusion because I believe its just as beneficial for the "typical" kids as it is for the kids with special needs. I wanted my boys to understand that we are, each of us, a small part of the whole called humanity and all the parts are equally important. The whole cannot exist without each part. But, that is not what I started out to write about.
Its now summer, and The Boy attends day camp throughout most of the summer. This is for 2 reasons. Practically speaking, I work part time. So The Boy needs to do something for about 4-5 hours a day. But more importantly, it is our way of keeping him engaged with others. He doesn't qualify for ESY in our district (don't even get me started on this, I'll rant for hours) so we needed to come up with some way for him to continue interacting with peers, listening and following directions, taking turns, participating in group activities, etc. Skills that he needs during the school year but that can fall behind just being at home all summer. So, day camp it is.
As he gets older and progresses, and since the camps he's attended in the past have gone so well, we've been venturing into some new territory. Expanding his camp resume so to speak. And since he loves basketball, I signed him up for a basketball camp at our gym. It was just 4 days, with a small group of 4th and 5th graders. I knew it would be a stretch. When I say The Boy loves basketball, I mean he loves to shoot baskets. And he's a really good shot. He also enjoys dribbling and passing the ball. But a scrimmage or game? Well that's just a little too much for him....at least for now. Games move too fast, his processing time is slower and he struggles to keep up, gets overwhelmed, and shuts down. The result is him standing in the middle of the court not moving as the game takes place around him. He basically becomes an obstacle for the other players to avoid.
So why would I sign him up for a basketball camp you might ask. And that's a really good question. But as I said earlier, he loves basketball. And he loves our gym. And they love him. The person who runs the youth basketball program knows The Boy, his daughter and The Boy were in the same classroom for 3 years. When I talked to the program director about the possibility of including The Boy in the camp, he was all for it. And he knows what he's getting into.
The Boy learns a lot from observing. So we figured he would do the activities he could, hopefully attempt some new ones, and watch the ones he wasn't comfortable doing. You see, as far as I'm concerned, sometimes inclusions looks like all the kids doing the same activity. And sometimes it looks like a child doing a slightly modified activity. And sometimes it looks like a child watching his peers doing an activity he's not quite ready to participate in. And all of that is OK. It's not exclusion if the child is the one choosing not to participate in a particular activity. He gets just as much out of watching and learning and cheering for his peers as they scrimmage.
And maybe someday he'll be ready to be part of the scrimmage. Whether he is or not is totally up to him. It does not matter to me if he ever plays in a scrimmage or a game. But as long as he wants to, I will continue to give him opportunities to learn and grow and try. Because as my Dad told me growing up "How do you know that you can't unless you try. Again and again and again."
Wednesday, July 8, 2015
Tuesday, June 30, 2015
To Error is Human
I've been thinking a lot the past few days. I know, that can be dangerous, but sometimes I just can't help myself. Like a lot of people's, my Facebook feed looks like a billion bags of Skittles exploded all over the internet. I don't mean that derogatory at all, in fact it's quite happy and cheerful. The colors that is. All of the posts, not so much. It seems everyone has an opinion and wants to share it.
I'm a naturally curious person. And I've always liked to watch people and ponder human nature. I find the diversity of humanity fascinating. So I've been reading a lot. Posts and opinions and blogs. Some of them have made me chuckle. Some of them have made me think, and rethink. And some of them have made me angry.
I consider myself a "woman of faith", I call myself a Christian. I may not wave the Christian flag in front of everyone, but my faith is very important to me. Important and deeply personal. Most of what I learned about faith came from my Dad. And of course, the church I was raised in. But first and foremost, it was my Dad who taught me about God and Jesus and unconditional love.
One of the first things my Dad taught me was the Golden Rule. You know the one, "Do unto other as you would have them do unto you." Way before he ever brought up the 10 Commandments or any other biblical teachings. You see, he believed that a three year old could understand the simplicity of the Golden Rule, but would have no clue about adultery or coveting or most of the other stuff. But treating others the way you wish they would treat you? With kindness and respect and dignity, even when you don't agree? Even a preschooler could understand that. And he expected us to not only understand it, but live it.
My dad, who went to seminary, who owned more Bibles and books about the Bible than all other kinds of books in our house combined. (Including children's books. And we had a lot of children's books. Reading was a highly loved skill in our household.) This man who loved The Lord, who loved to delve into the scriptures, he knew that the Bible teaches many, many different things. And that these many teachings can, and are, interpreted differently by different people. This is why we have many different denominations, all based on the same ancient book.
God created us with free will. And one of the ways we use that free will is to interpret the teachings in the Bible. Do we make mistakes? We most assuredly do. I'm sure I do, I'm pretty sure you do to. But you know what? God forgives us when we make those mistakes. He sees our hearts, knows that we are trying to do the right thing. Even if its not what he intended. And He loves us anyway. In spite of our short comings or because of them, I'm not really sure. But I know He loves me.
For my Dad, the most important lesson in the entire Bible was to love one another. And to view all other scriptures through this lens of love. I can't tell you how often I heard from my Dad: "All we have to do is love one another. That's it. Just love each other, the rest is up to God." It was his way of telling us that it is not our place to judge. That our place is to be kind, respectful, love each other. All the others. No exceptions. Period. I agree with my Dad.
So I'm going to love my fellow humans. All fellow humans, whether they are straight, LGBTQ, disabled, Muslim, atheist, or are different in any other manner. I will love them. And I will break bread with them. And I will celebrate with them. Right where they are.
Am I right? Is my interpretation of the Bible the correct one? I can't say. But what I can say is that in the end, when I'm standing before my Creator I can tell Him that I did what I really thought was the right thing, what I thought His Book was teaching me. If I'm wrong, I believe He will forgive me and welcome me through the pearly gates. And I will know that even though I was wrong, at least my error didn't harm anyone else. Because if I'm going to error, I want to error on the side of not causing anyone else harm.
"All we have to do is love one another. That's it. Just love each other, the rest is up to God."
I'm a naturally curious person. And I've always liked to watch people and ponder human nature. I find the diversity of humanity fascinating. So I've been reading a lot. Posts and opinions and blogs. Some of them have made me chuckle. Some of them have made me think, and rethink. And some of them have made me angry.
I consider myself a "woman of faith", I call myself a Christian. I may not wave the Christian flag in front of everyone, but my faith is very important to me. Important and deeply personal. Most of what I learned about faith came from my Dad. And of course, the church I was raised in. But first and foremost, it was my Dad who taught me about God and Jesus and unconditional love.
One of the first things my Dad taught me was the Golden Rule. You know the one, "Do unto other as you would have them do unto you." Way before he ever brought up the 10 Commandments or any other biblical teachings. You see, he believed that a three year old could understand the simplicity of the Golden Rule, but would have no clue about adultery or coveting or most of the other stuff. But treating others the way you wish they would treat you? With kindness and respect and dignity, even when you don't agree? Even a preschooler could understand that. And he expected us to not only understand it, but live it.
My dad, who went to seminary, who owned more Bibles and books about the Bible than all other kinds of books in our house combined. (Including children's books. And we had a lot of children's books. Reading was a highly loved skill in our household.) This man who loved The Lord, who loved to delve into the scriptures, he knew that the Bible teaches many, many different things. And that these many teachings can, and are, interpreted differently by different people. This is why we have many different denominations, all based on the same ancient book.
God created us with free will. And one of the ways we use that free will is to interpret the teachings in the Bible. Do we make mistakes? We most assuredly do. I'm sure I do, I'm pretty sure you do to. But you know what? God forgives us when we make those mistakes. He sees our hearts, knows that we are trying to do the right thing. Even if its not what he intended. And He loves us anyway. In spite of our short comings or because of them, I'm not really sure. But I know He loves me.
For my Dad, the most important lesson in the entire Bible was to love one another. And to view all other scriptures through this lens of love. I can't tell you how often I heard from my Dad: "All we have to do is love one another. That's it. Just love each other, the rest is up to God." It was his way of telling us that it is not our place to judge. That our place is to be kind, respectful, love each other. All the others. No exceptions. Period. I agree with my Dad.
So I'm going to love my fellow humans. All fellow humans, whether they are straight, LGBTQ, disabled, Muslim, atheist, or are different in any other manner. I will love them. And I will break bread with them. And I will celebrate with them. Right where they are.
Am I right? Is my interpretation of the Bible the correct one? I can't say. But what I can say is that in the end, when I'm standing before my Creator I can tell Him that I did what I really thought was the right thing, what I thought His Book was teaching me. If I'm wrong, I believe He will forgive me and welcome me through the pearly gates. And I will know that even though I was wrong, at least my error didn't harm anyone else. Because if I'm going to error, I want to error on the side of not causing anyone else harm.
"All we have to do is love one another. That's it. Just love each other, the rest is up to God."
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 11, 2015
Family Photos
Since I've been posting photos for Wordless Wednesday, I've been going though some of my pictures. And I was reminded of a conversation I had with Mr. Fixit years ago when we were looking at proofs of our kids. Our oldest, 11 years old at the time, had a bright red cast on his right arm from hand to elbow. We were attempting to make our selections from the proofs and we were not agreeing on anything. He held one up and I said no. I held one up and he said no. I asked him why, all three boys looking in the general direction of the camera, 2 of the three smiling (The Boy rarely smiles for the camera). What about this photo didn't he like. His response was that he could see the cast. To which I responded that was one of the reason I liked it. He was shocked. Why would I like a photo that showed the cast; a dirty, grimy, graffiti-ed anomaly.
Here's my take on it. I want photos of my kids that show them in that moment with all their wonderful, messy, quirky, imperfections. I don't want photos of my kids dressed to the nines all spit and polish sitting perfectly on a rock by a stream. I want the photo that shows the hole in my sons jeans, his bare toes in the water with his shoes discarded aside. I want the photo with the dirt on his cheek and his hands from the rocks he is throwing into the water. I want to see the look of pure joy that radiates from his eyes as he drops a handful of leaves on his brother's head. That is my boys.
When my boys are grown and gone and I'm 80 years old living in a retirement home I don't want to look at a photo album full of posed pictures that do not represent the life we lived. I want to remember all the imperfect moments of our life. The cast and what it represented. I want to remember the story.
It started out common enough, the story of many a broken arms. He was at baseball camp, dove to catch a pop fly, and landed on his arm. Although in pain, he told his coach he wanted to stay the rest of the day and watch. So he did. That night we were heading out of town to attend a sports festival at the Fun House. He was signed up for the kids Tri. He insisted his wrist would be fine with some Advil and an ace bandage, it was just sprained. He refused to go to the doctor, didn't complain at all. So we loaded up the car and left.
The next day was the Tri. We put a brace on his wrist, gave him more Advil and off he went to the starting line. We went to the first transition to wait for him to exit the water. When I saw him, I knew. I KNEW. He was in severe pain, ghostly white, holding his arm up gingerly trying to run to his bike. I started yelling at him to get off the course, to stop. Yelling at the top of my lungs; screaming like a maniac. He looked at me and shook his head no. And he kept going. Off on his bike with his arm held up, only one hand on the handlebars. I watched him ride off and then ran to the finish to wait.
I would not have believed it, but when he crossed the finish line he was past ghostly white. He had tears in the corners of his eyes. I took him by his good hand straight to the medic tent. The medic took about 30 seconds to tell us to take him into town to the emergency room; he was pretty sure it was broken. So I load him in the car and off we go. It's a 20 minute drive.
During the 20 minute ride, that child of mine informed me that he was sure it was broken. I asked him why he thought so. He then told me that when he fell on it at baseball camp, he heard it snap. You what?!?!? Why in the world would you have not told us? Because I wanted to run the Tri he said. After a stern lecture about how he should have said something, he could have further injured it, or caused permanent damage, blah, blah, blah (all the appropriate parenting jargon) we arrived at the emergency room.
In the end, it was broken. Both bones. My dumb kid ran a Tri with 2 broken bones. Thankfully, no permanent damage was done. And now, 8 years later, we laugh about this story. Really? What 11 year old runs a tri with broken bones. What parent allows it. We do not dwell on the bad parenting part (I should have taken him to the doctor the day it happened, no options) or the poor judgment of the 11 year old. We talk about the good characteristics he showed: perseverance, commitment, mental toughness. And when I look at the photo of the boys with the oldest in a bright red, grimy cast I smile. That kid was something else.
That's what I want to remember with the help of photos that document our unique, messy, quirky, glorious lives.
Here's my take on it. I want photos of my kids that show them in that moment with all their wonderful, messy, quirky, imperfections. I don't want photos of my kids dressed to the nines all spit and polish sitting perfectly on a rock by a stream. I want the photo that shows the hole in my sons jeans, his bare toes in the water with his shoes discarded aside. I want the photo with the dirt on his cheek and his hands from the rocks he is throwing into the water. I want to see the look of pure joy that radiates from his eyes as he drops a handful of leaves on his brother's head. That is my boys.
When my boys are grown and gone and I'm 80 years old living in a retirement home I don't want to look at a photo album full of posed pictures that do not represent the life we lived. I want to remember all the imperfect moments of our life. The cast and what it represented. I want to remember the story.
It started out common enough, the story of many a broken arms. He was at baseball camp, dove to catch a pop fly, and landed on his arm. Although in pain, he told his coach he wanted to stay the rest of the day and watch. So he did. That night we were heading out of town to attend a sports festival at the Fun House. He was signed up for the kids Tri. He insisted his wrist would be fine with some Advil and an ace bandage, it was just sprained. He refused to go to the doctor, didn't complain at all. So we loaded up the car and left.
The next day was the Tri. We put a brace on his wrist, gave him more Advil and off he went to the starting line. We went to the first transition to wait for him to exit the water. When I saw him, I knew. I KNEW. He was in severe pain, ghostly white, holding his arm up gingerly trying to run to his bike. I started yelling at him to get off the course, to stop. Yelling at the top of my lungs; screaming like a maniac. He looked at me and shook his head no. And he kept going. Off on his bike with his arm held up, only one hand on the handlebars. I watched him ride off and then ran to the finish to wait.
I would not have believed it, but when he crossed the finish line he was past ghostly white. He had tears in the corners of his eyes. I took him by his good hand straight to the medic tent. The medic took about 30 seconds to tell us to take him into town to the emergency room; he was pretty sure it was broken. So I load him in the car and off we go. It's a 20 minute drive.
During the 20 minute ride, that child of mine informed me that he was sure it was broken. I asked him why he thought so. He then told me that when he fell on it at baseball camp, he heard it snap. You what?!?!? Why in the world would you have not told us? Because I wanted to run the Tri he said. After a stern lecture about how he should have said something, he could have further injured it, or caused permanent damage, blah, blah, blah (all the appropriate parenting jargon) we arrived at the emergency room.
In the end, it was broken. Both bones. My dumb kid ran a Tri with 2 broken bones. Thankfully, no permanent damage was done. And now, 8 years later, we laugh about this story. Really? What 11 year old runs a tri with broken bones. What parent allows it. We do not dwell on the bad parenting part (I should have taken him to the doctor the day it happened, no options) or the poor judgment of the 11 year old. We talk about the good characteristics he showed: perseverance, commitment, mental toughness. And when I look at the photo of the boys with the oldest in a bright red, grimy cast I smile. That kid was something else.
That's what I want to remember with the help of photos that document our unique, messy, quirky, glorious lives.
Wednesday, June 10, 2015
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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Tuesday, May 19, 2015
Living in a Literal World
The Boy loves his pajamas. And I mean, he LOVES them. If we are at home, he has pajamas on. As soon as he gets home from school, he changes. He has a fond preference for the all cotton (no fire retardant), long sleeve, long pant, form fitting pajamas that look like long johns. I'm convinced this is because he likes the pressure it gives him all over his body. He craves deep pressure. But that really has nothing to do with this post.
Today when he was trying to change into his pajamas after school (which takes considerable effort on his part due to his motor planning skills) he was putting them on backwards. They were halfway up his legs with the tag in the front. I looked at what he was doing and casually said "the tag needs to go in back."
I watched as he took them off, looked at me quizzically and then proceeded to put them behind his back. Then he looked at me quizzically again not knowing what to do next. I couldn't help it, I started laughing.
"The tag needs to go in back". Such a simple statement I probably told my older boys a gazillion times to make sure they put their pants and shirts on the right direction. Most kids know exactly what you mean. Not The Boy. What he heard was "the tag needs to go on your back" and that was all. The implied "when they are on your body" just wasn't there for him. So he put the tag on his back and looked at me for what to do next.
I probably shouldn't have laughed. But it was funny. Or heartbreaking. I prefer to go with funny. I'd rather laugh than cry.
Today when he was trying to change into his pajamas after school (which takes considerable effort on his part due to his motor planning skills) he was putting them on backwards. They were halfway up his legs with the tag in the front. I looked at what he was doing and casually said "the tag needs to go in back."
I watched as he took them off, looked at me quizzically and then proceeded to put them behind his back. Then he looked at me quizzically again not knowing what to do next. I couldn't help it, I started laughing.
"The tag needs to go in back". Such a simple statement I probably told my older boys a gazillion times to make sure they put their pants and shirts on the right direction. Most kids know exactly what you mean. Not The Boy. What he heard was "the tag needs to go on your back" and that was all. The implied "when they are on your body" just wasn't there for him. So he put the tag on his back and looked at me for what to do next.
I probably shouldn't have laughed. But it was funny. Or heartbreaking. I prefer to go with funny. I'd rather laugh than cry.
Wednesday, May 13, 2015
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.
Wednesday, April 29, 2015
Thursday, April 23, 2015
The New Normal
The Boy has had a heck of a spring. And after the fall/winter we barely survived, this is sort of amazing. He's made so much progress in so many areas. He's reading. READING! And riding a bike. And writing his name. And sending "emails" home that he types telling us about his day at school. He's learning so many new skills. He's even been dry at night for the past 5 nights in a row. And that, my friends, is a true miracle.
That boy has never had a dry night in his life. We've spend a small fortune on night time Pull Ups. Not only have they been wet every single morning, but half the time he even pees through them and wets the bed. Laundry is a daily routine. It's hard to believe one small body can produce so much pee.
We have tried everything. And I mean everything. No liquids after 7:00 pm. Then 6:00. Then severely limited them after 5:00 pm. We briefly discussed going to 4:00, but were afraid that might be considered child abuse. We made sure he emptied his bladder before bed. Then I started getting him up when I go to bed to empty his bladder one more time. I even got him up in the middle of the night to go yet again for a few nights. (that didn't last long, mama needs her sleep) Nothing helped. He ALWAYS got up soaking wet in the morning.
So imagine our surprise when 5 days ago he got up and was completely dry. The Pull Up was dry! We were shocked. And so excited. We made a big deal out of it and the The Boy actually seemed proud. This is an emotion he doesn't show very often, no matter how big his accomplishment. So clearly something was clicking here. We talked about it throughout the day and again when he went to bed. And in the morning he was dry again! 2 days in a row!
Its now been 5 days and he's been dry every morning. As I texted my sister yesterday: Dare I say, could this possibly be our new normal? He even asked this morning about wearing "unnerwears in my bed". I'm not sure I'm ready for that step. Honestly, it frightens me a little. I know how much pee this kid generates and the thought of it flowing freely like a river ... I just don't want to go there. Yet. But clearly something has clicked with him. I don't believe 5 days in a row is a fluke. Especially 5 days in a row after 9 years of soaking wet every single night.
I had started to wonder if night time enuresis was just a life time fact for us. I had honestly put this issue on the back burner, not giving it much thought anymore and just resigning myself to daily laundry and morning sponge baths. But once again, The Boy is teaching me that I should never count him out. And that its not up to me. When he's ready, he'll make his move; in his own time, in his own way. I just have to offer support and cheer from the sidelines. You go kid, you go!
That boy has never had a dry night in his life. We've spend a small fortune on night time Pull Ups. Not only have they been wet every single morning, but half the time he even pees through them and wets the bed. Laundry is a daily routine. It's hard to believe one small body can produce so much pee.
We have tried everything. And I mean everything. No liquids after 7:00 pm. Then 6:00. Then severely limited them after 5:00 pm. We briefly discussed going to 4:00, but were afraid that might be considered child abuse. We made sure he emptied his bladder before bed. Then I started getting him up when I go to bed to empty his bladder one more time. I even got him up in the middle of the night to go yet again for a few nights. (that didn't last long, mama needs her sleep) Nothing helped. He ALWAYS got up soaking wet in the morning.
So imagine our surprise when 5 days ago he got up and was completely dry. The Pull Up was dry! We were shocked. And so excited. We made a big deal out of it and the The Boy actually seemed proud. This is an emotion he doesn't show very often, no matter how big his accomplishment. So clearly something was clicking here. We talked about it throughout the day and again when he went to bed. And in the morning he was dry again! 2 days in a row!
Its now been 5 days and he's been dry every morning. As I texted my sister yesterday: Dare I say, could this possibly be our new normal? He even asked this morning about wearing "unnerwears in my bed". I'm not sure I'm ready for that step. Honestly, it frightens me a little. I know how much pee this kid generates and the thought of it flowing freely like a river ... I just don't want to go there. Yet. But clearly something has clicked with him. I don't believe 5 days in a row is a fluke. Especially 5 days in a row after 9 years of soaking wet every single night.
I had started to wonder if night time enuresis was just a life time fact for us. I had honestly put this issue on the back burner, not giving it much thought anymore and just resigning myself to daily laundry and morning sponge baths. But once again, The Boy is teaching me that I should never count him out. And that its not up to me. When he's ready, he'll make his move; in his own time, in his own way. I just have to offer support and cheer from the sidelines. You go kid, you go!
Saturday, April 18, 2015
Extraordinary
I read a quote on an autism facebook page the other day that I simply love. "When normal isn't normal it becomes extraordinary." It is so true.
We've been working with The Boy on learning to ride a bike for 2 solid years. Even though he is very athletic and any sport with a ball is second nature to him, riding a bike had continued to evade him. At 9 years old he could not even pedal a bike with training wheels. Its not the balancing. You should see him on a scooter, he's a speed demon with amazing balance. And even on a bike with no training wheels he could push it along with his feet on the ground and then lift them up and coast for yards and yards. He has the balance. It's the motor planning required for pedaling that has been his nemesis. He simply could not get his legs to push down, pull up in alternating fashion.
With the change to the new school last September, The Boy was suddently included not only in PE with his GenEd class, but also Adaptive PE with his SpEd class. He has APE every day and twice a week they work on bike riding. Yay! With a variety of trikes and bikes of every configuration imaginable, they begain working with The Boy on the mechanics of pedaling a bike.
Sometime during the fall, the APE teacher suggested we get The Boy a "Big Wheel" type trike big enough for him to ride at home. Apparently the angle of pedaling this is different and easier than a bike. So Santa brought him a Razer Rip-Rider 360. We chose this as we thought this was something that a "typical" 9 year old might like and wouldn't be fodder for teasing or stares. (And come to find out, his 11 year old cousin had requested and received the exact same trike for Christmas) We were pleasantly surprised to see him get right on it and pedal away on Christmas morning.
After several months of watching him ride around on this trike like a mad man, we once again decided to reintroduce the "big boy bike". The Razer 360 is great for riding around our cul de sac, but doesn't really work well for family bike rides which was our ultimate goal. So over a long weekend at the fun house (which has multiple bike paths that lead every where he likes to go) I put on his helmet, grabbed the back of his bike seat and we took off for the river. He did awesome! By the end of that weekend he could ride for a couple of miles with me running along side of him providing minimal support.
By the time Spring Break rolled around around, he was riding completely independently. We went for a 6 mile family bike ride. A few months ago I didn't know if this would ever happen. I loved every minute of it. It was simply extraordinary.
"When normal isn't normal, it becomes extraordinary."
We've been working with The Boy on learning to ride a bike for 2 solid years. Even though he is very athletic and any sport with a ball is second nature to him, riding a bike had continued to evade him. At 9 years old he could not even pedal a bike with training wheels. Its not the balancing. You should see him on a scooter, he's a speed demon with amazing balance. And even on a bike with no training wheels he could push it along with his feet on the ground and then lift them up and coast for yards and yards. He has the balance. It's the motor planning required for pedaling that has been his nemesis. He simply could not get his legs to push down, pull up in alternating fashion.
With the change to the new school last September, The Boy was suddently included not only in PE with his GenEd class, but also Adaptive PE with his SpEd class. He has APE every day and twice a week they work on bike riding. Yay! With a variety of trikes and bikes of every configuration imaginable, they begain working with The Boy on the mechanics of pedaling a bike.
Sometime during the fall, the APE teacher suggested we get The Boy a "Big Wheel" type trike big enough for him to ride at home. Apparently the angle of pedaling this is different and easier than a bike. So Santa brought him a Razer Rip-Rider 360. We chose this as we thought this was something that a "typical" 9 year old might like and wouldn't be fodder for teasing or stares. (And come to find out, his 11 year old cousin had requested and received the exact same trike for Christmas) We were pleasantly surprised to see him get right on it and pedal away on Christmas morning.
After several months of watching him ride around on this trike like a mad man, we once again decided to reintroduce the "big boy bike". The Razer 360 is great for riding around our cul de sac, but doesn't really work well for family bike rides which was our ultimate goal. So over a long weekend at the fun house (which has multiple bike paths that lead every where he likes to go) I put on his helmet, grabbed the back of his bike seat and we took off for the river. He did awesome! By the end of that weekend he could ride for a couple of miles with me running along side of him providing minimal support.
By the time Spring Break rolled around around, he was riding completely independently. We went for a 6 mile family bike ride. A few months ago I didn't know if this would ever happen. I loved every minute of it. It was simply extraordinary.
"When normal isn't normal, it becomes extraordinary."
Wednesday, March 18, 2015
They Will Be OK
I worry. I'm a mom. Its what we do. And I'm really good at it. I worry all the time. About all my kids. Am I doing enough? Am I doing it the right way? Am I teaching them what they need to know? Helping them to reach their full potential? And the dreaded Am I yelling too much?
I try really hard to be a patient mom. Really I do. But I'm human. And I fail. All the time. I yell way more than I'd like to admit. At all my kids. But when I yell at The Boy, it somehow feels worse. Most of the time he is not acting out to be defiant. His mind and body work differently, and he often can't help what he's doing. I know that. But it can still be frustrating. And sometimes I loose it and yell. Not necessarily at him, but yelling just the same. Then I feel like a despicable human being wanting to crawl away and hide. I worry about the effect the yelling may have on him.
I'm sharing this because I'm hoping I'm not the only one out there who sometimes looses control and yells. And because I want to share that I think our kids are going to be OK in spite of us. The reason I think they are going to be OK is in part due to an interaction I had at the grocery store yesterday.
The Boy has been struggling with severe anxiety for a couple of weeks. And I mean SEVERE ANXIETY. If I leave the house without him, even if he's staying with Mr. Fixit, he cries the whole time I'm gone. It is not fun. We've all been feeling the pressure from his anxiety. So, yesterday I needed to go grocery shopping. I gave The Boy the choice of staying home and playing outside with daddy, or going with me. He insisted on going with me. Really.
He was great during our shopping, a very good listener and helpful. While waiting in line at the cash register behind The Cat Lady (I'm not kidding, she had 2 carts FULL of cat food both dry and canned, but I digress) he saw some big stuffed animals about 20 feet away. He wanted to go see them but I had to stay in line waiting our turn. I told him he could go look at them by himself, look with his eyes only not his hands, no touching. He looked over at them, looked at me, looked at them again and then with a pained expression he said "Not today, maybe tomorrow". With his anxiety on high alert, it was just too much for him to walk over there by himself. I encouraged him again, but didn't push it.
He eventually ventured to the front of the line where The Cat Lady was bagging her groceries and had a conversation with her. I have no idea what they talked about, I couldn't hear from where I was standing. I've taken the stance that if everyone looks happy and it doesn't appear that he is bothering the other person, I let them figure things out on their own. People generally respond positively to The Boy, so I didn't really think much of it. I paid for my groceries and moved to the front to bag my groceries.
The Cat Lady stopped me with a touch to my arm. She very sweetly said "I want to commend you on how you interact with your son with love and respect." I was a taken aback, and momentarily at a loss for words. I mean, we haven't exactly been having a rosy time lately and I've lost my patience more than once in the last few weeks. I stumbled over a few words and said something about trying, but not always succeeding. Her response was "Well, you must succeed more often then you realize because your son also responds to you with love and respect. He learned that somewhere." And then she smiled, winked and moved on.
It was exactly what I needed to hear. It may be exactly what you need to hear too. In spite of our humanness, our short comings, our failures, I believe our kids will be OK.
I try really hard to be a patient mom. Really I do. But I'm human. And I fail. All the time. I yell way more than I'd like to admit. At all my kids. But when I yell at The Boy, it somehow feels worse. Most of the time he is not acting out to be defiant. His mind and body work differently, and he often can't help what he's doing. I know that. But it can still be frustrating. And sometimes I loose it and yell. Not necessarily at him, but yelling just the same. Then I feel like a despicable human being wanting to crawl away and hide. I worry about the effect the yelling may have on him.
I'm sharing this because I'm hoping I'm not the only one out there who sometimes looses control and yells. And because I want to share that I think our kids are going to be OK in spite of us. The reason I think they are going to be OK is in part due to an interaction I had at the grocery store yesterday.
The Boy has been struggling with severe anxiety for a couple of weeks. And I mean SEVERE ANXIETY. If I leave the house without him, even if he's staying with Mr. Fixit, he cries the whole time I'm gone. It is not fun. We've all been feeling the pressure from his anxiety. So, yesterday I needed to go grocery shopping. I gave The Boy the choice of staying home and playing outside with daddy, or going with me. He insisted on going with me. Really.
He was great during our shopping, a very good listener and helpful. While waiting in line at the cash register behind The Cat Lady (I'm not kidding, she had 2 carts FULL of cat food both dry and canned, but I digress) he saw some big stuffed animals about 20 feet away. He wanted to go see them but I had to stay in line waiting our turn. I told him he could go look at them by himself, look with his eyes only not his hands, no touching. He looked over at them, looked at me, looked at them again and then with a pained expression he said "Not today, maybe tomorrow". With his anxiety on high alert, it was just too much for him to walk over there by himself. I encouraged him again, but didn't push it.
He eventually ventured to the front of the line where The Cat Lady was bagging her groceries and had a conversation with her. I have no idea what they talked about, I couldn't hear from where I was standing. I've taken the stance that if everyone looks happy and it doesn't appear that he is bothering the other person, I let them figure things out on their own. People generally respond positively to The Boy, so I didn't really think much of it. I paid for my groceries and moved to the front to bag my groceries.
The Cat Lady stopped me with a touch to my arm. She very sweetly said "I want to commend you on how you interact with your son with love and respect." I was a taken aback, and momentarily at a loss for words. I mean, we haven't exactly been having a rosy time lately and I've lost my patience more than once in the last few weeks. I stumbled over a few words and said something about trying, but not always succeeding. Her response was "Well, you must succeed more often then you realize because your son also responds to you with love and respect. He learned that somewhere." And then she smiled, winked and moved on.
It was exactly what I needed to hear. It may be exactly what you need to hear too. In spite of our humanness, our short comings, our failures, I believe our kids will be OK.
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