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.
My Side of Typical
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Friday, August 21, 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, 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.
Friday, May 1, 2015
Tired
I love The Boy more than life itself. And I wouldn't change a hair on his head. He is just the way he is supposed to be, made perfectly. But that doesn't mean I don't get overwhelmed sometimes. And frustrated. And just plain tired. Yesterday was one of those days. A day for a small pity party and a good cry. I. Was. Tired.
I sent the following email to my sister:
Crap. I'm having one of those days where I'm just so damn tired of it all. I just want one calm, easy morning where I don't have to make a juice cocktail or administer meds. Where I don't have to sprinkle enzymes on everything. One day where I don't have to pin him to the floor just to brush his teeth or chase him through the house to brush his hair. One quiet morning where I don't have to listen to the school schedule 84 times before the bus arrives. Hell, one morning where I don't have to make the exact same toast and scrambled eggs for breakfast. I just want one peaceful shower, just one! I'm just so tired of it all. It's the same damn thing every day; lather, rinse, and repeat. I'm old and I'm tired.
I used to feel guilty for these feelings. But you know what? I'm human. I'm allowed to feel what I'm feeling. It doesn't mean I love my son any less. Or wish he was different. We all get overwhelmed and frustrated and just plain tired sometimes. Its OK, really it is. For me, its important to acknowledge these feelings. Vent to someone who understands. Get it out. And then move on with my day.
After The Boy got on the bus, I had a good cry. And then I got ready for my day and left for work.
I sent the following email to my sister:
Crap. I'm having one of those days where I'm just so damn tired of it all. I just want one calm, easy morning where I don't have to make a juice cocktail or administer meds. Where I don't have to sprinkle enzymes on everything. One day where I don't have to pin him to the floor just to brush his teeth or chase him through the house to brush his hair. One quiet morning where I don't have to listen to the school schedule 84 times before the bus arrives. Hell, one morning where I don't have to make the exact same toast and scrambled eggs for breakfast. I just want one peaceful shower, just one! I'm just so tired of it all. It's the same damn thing every day; lather, rinse, and repeat. I'm old and I'm tired.
I used to feel guilty for these feelings. But you know what? I'm human. I'm allowed to feel what I'm feeling. It doesn't mean I love my son any less. Or wish he was different. We all get overwhelmed and frustrated and just plain tired sometimes. Its OK, really it is. For me, its important to acknowledge these feelings. Vent to someone who understands. Get it out. And then move on with my day.
After The Boy got on the bus, I had a good cry. And then I got ready for my day and left for work.
Friday, February 20, 2015
Never Too Late
The Boy is reading.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
Thursday, October 2, 2014
An Open Letter to Our Amazing Neighborhood School
To our amazing neighborhood school family:
After much discussion and deliberation, we have made the very difficult decision to move Bambam to another school with a dedicated special education classroom. As most of you know, Bambam has varied and complicated special needs. We have high hopes that his many needs will be sucsessfully met in his new school. But that didn't make this decision an easy one.
This decision was difficult for many reasons; not the least of which was the thought of leaving this amazing school. You have been his school family for 3 years. During that time he has been accepted, included, respected, and loved by teachers, administrators, support staff, students and parents alike. I cannot imagine a more positive, inclusive environment in any school anywhere.
The student population has been wonderful. Bambam has not been simply tolerated; after all, who really has a goal of being tolerated? He was accepted. His classmates included him when they could, helped him when he needed it, celebrated his accomplishments, watched out for him, and most importantly became his friends. Bambam talks about each and every one of them all the time.
Some students have been in class with Bambam for 3 years, some for 2, some for 1. Some just passed him in the hallway or saw him in the cafeteria or on the playground. It didn't seem to matter. It appears they all know who he is. When we are in town or at the pool inevitably a child will come up and talk to Bambam. I sometimes do not know or recognize them. But they quickly tell me they go to school with him. Kids from kindergarten to 5th grade, they all seem genuinely happy to see him. The world could learn a few things from our little neighborhood school.
And so it is with a heavy heart that we are now closing this chapter and starting a new one. Please know that we could never thank you enough for all each of you have done for Bambam. I only hope that you too have gained something from the experience of knowing our sweet boy.
And, instead of saying goodbye, we will say that we hope to see you around town.
After much discussion and deliberation, we have made the very difficult decision to move Bambam to another school with a dedicated special education classroom. As most of you know, Bambam has varied and complicated special needs. We have high hopes that his many needs will be sucsessfully met in his new school. But that didn't make this decision an easy one.
This decision was difficult for many reasons; not the least of which was the thought of leaving this amazing school. You have been his school family for 3 years. During that time he has been accepted, included, respected, and loved by teachers, administrators, support staff, students and parents alike. I cannot imagine a more positive, inclusive environment in any school anywhere.
The student population has been wonderful. Bambam has not been simply tolerated; after all, who really has a goal of being tolerated? He was accepted. His classmates included him when they could, helped him when he needed it, celebrated his accomplishments, watched out for him, and most importantly became his friends. Bambam talks about each and every one of them all the time.
Some students have been in class with Bambam for 3 years, some for 2, some for 1. Some just passed him in the hallway or saw him in the cafeteria or on the playground. It didn't seem to matter. It appears they all know who he is. When we are in town or at the pool inevitably a child will come up and talk to Bambam. I sometimes do not know or recognize them. But they quickly tell me they go to school with him. Kids from kindergarten to 5th grade, they all seem genuinely happy to see him. The world could learn a few things from our little neighborhood school.
And so it is with a heavy heart that we are now closing this chapter and starting a new one. Please know that we could never thank you enough for all each of you have done for Bambam. I only hope that you too have gained something from the experience of knowing our sweet boy.
And, instead of saying goodbye, we will say that we hope to see you around town.
Wednesday, September 10, 2014
September
I didn't write much in September. September was a hard month. Bambam had a tough time adjusting to the transition to school. I was both surprised and a little disappointed by this. I know I shouldn't be. But I'm human, and disappointment is a natural human emotion.
You see, Bambam had such a stellar summer. I mean he was a rock star. He went to day camp, he fully potty trained, he made significant gains in language, his imaginative play exploded. I could go on and on, but you get the idea. It was a great summer. The best he's ever had.
So when we got ready to transition into school, and he was so excited for school to start, we naturally assumed he would continue to be that rock star. Contributing to our confidence was the fact that his school does a 1-2 loop, meaning he would be in the same classroom with the same teacher and the same kids as last year. No changes. And he would have the same 1 to 1 aid. It was a recipe for success. Or so we thought.
What we failed to recognize was that the little adjustments (at least we thought they were little) we made to his daily schedule would really throw him off, causing major anxiety and frustration. The first of which was lengthening his day to the full school day.
Last year, he left school an hour early every day. This year he stays until 2:45. But every day at 1:45 he looks at his aid, the amazing "E", and says "home time now". His internal clock is incredible. He cannot tell time. At least, I don't think he can. He can just now recognize and name numbers 1-9. But he's had an amazing internal clock since the day he was born. As an infant, you could set your watch by his sleeping and feeding times. He was always spot on. So now, every day at 1:45 he thinks its time to go home. And "E" is struggling to convince him that its still school time. He is staying, but he's done with working for the day. On Tuesdays and Thursdays, they have PE at the end of the day, those days go OK. My athletic little guy shines at PE. Its the one place where he really fits in, where he actually outshines many of his peers. He LOVES PE.
But on Mondays and Wednesdays they have Music and Art respectively at the end of the day. And these are not going so well. With very (and I can't stress very enough) delayed fine motor skills, Art is a huge frustration for him under the best of circumstances. These are not the best of circumstances. He has ripped a project, thrown a project, painted his aid (and himself), and generally been wreaking havoc all over the art room. He's had to leave the art room. I've been called to the school. More than once.
In addition, more is being asked of Bambam. He is having more structured schoolwork time, we call it table time. He HATES table time. Sitting for more than 30 seconds is a challenge for him. But, we decided it was time to do just that, challenge him a little more. He must complete 3 academic tasks, then gets a reward of his choice. Did I mention Bambam hates table time? At one point his frustration escalated to a chair being thrown into the smart board. And me being called to the school yet again.
This was not the start to school that I had envisioned.
And there it is. This was not what I had anticipated, what I thought was going to happen. It was not meeting my expectations. Who said I get to choose how things are going to go? I need to learn to let go of my expectations. Lesson learned.
Update, September 2014
I wrote this last year and never published it. I'm not sure why. But I am now. Because we are having the same sort of start to this school year. Transitions are so very hard on our spectrum kiddos. And this year he does have a new classroom and a new teacher and new classmates. My boy who every day this summer has asked to go to school is now asking every morning to go to camp. Its going to be a long September. Sigh.
You see, Bambam had such a stellar summer. I mean he was a rock star. He went to day camp, he fully potty trained, he made significant gains in language, his imaginative play exploded. I could go on and on, but you get the idea. It was a great summer. The best he's ever had.
So when we got ready to transition into school, and he was so excited for school to start, we naturally assumed he would continue to be that rock star. Contributing to our confidence was the fact that his school does a 1-2 loop, meaning he would be in the same classroom with the same teacher and the same kids as last year. No changes. And he would have the same 1 to 1 aid. It was a recipe for success. Or so we thought.
What we failed to recognize was that the little adjustments (at least we thought they were little) we made to his daily schedule would really throw him off, causing major anxiety and frustration. The first of which was lengthening his day to the full school day.
Last year, he left school an hour early every day. This year he stays until 2:45. But every day at 1:45 he looks at his aid, the amazing "E", and says "home time now". His internal clock is incredible. He cannot tell time. At least, I don't think he can. He can just now recognize and name numbers 1-9. But he's had an amazing internal clock since the day he was born. As an infant, you could set your watch by his sleeping and feeding times. He was always spot on. So now, every day at 1:45 he thinks its time to go home. And "E" is struggling to convince him that its still school time. He is staying, but he's done with working for the day. On Tuesdays and Thursdays, they have PE at the end of the day, those days go OK. My athletic little guy shines at PE. Its the one place where he really fits in, where he actually outshines many of his peers. He LOVES PE.
But on Mondays and Wednesdays they have Music and Art respectively at the end of the day. And these are not going so well. With very (and I can't stress very enough) delayed fine motor skills, Art is a huge frustration for him under the best of circumstances. These are not the best of circumstances. He has ripped a project, thrown a project, painted his aid (and himself), and generally been wreaking havoc all over the art room. He's had to leave the art room. I've been called to the school. More than once.
In addition, more is being asked of Bambam. He is having more structured schoolwork time, we call it table time. He HATES table time. Sitting for more than 30 seconds is a challenge for him. But, we decided it was time to do just that, challenge him a little more. He must complete 3 academic tasks, then gets a reward of his choice. Did I mention Bambam hates table time? At one point his frustration escalated to a chair being thrown into the smart board. And me being called to the school yet again.
This was not the start to school that I had envisioned.
And there it is. This was not what I had anticipated, what I thought was going to happen. It was not meeting my expectations. Who said I get to choose how things are going to go? I need to learn to let go of my expectations. Lesson learned.
Update, September 2014
I wrote this last year and never published it. I'm not sure why. But I am now. Because we are having the same sort of start to this school year. Transitions are so very hard on our spectrum kiddos. And this year he does have a new classroom and a new teacher and new classmates. My boy who every day this summer has asked to go to school is now asking every morning to go to camp. Its going to be a long September. Sigh.
Monday, January 20, 2014
Patience and Understanding
I've waited a week to write about this. My emotions are still raw. I'm trying so hard to practice the patience and understanding I want others to give Bambam, but honestly I'm struggling with it.
About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.
So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.
The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.
I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.
She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.
Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.
Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.
So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.
About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.
So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.
The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.
I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.
She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.
Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.
Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.
So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.
Tuesday, November 5, 2013
What's his thing?
I don't know about the rest of the autism parents out there, but whenever I'm in public and my son's diagnosis comes up I'm frequently asked some version of the "what is his thing" question. Um...his thing? Oh, you know, does he count cards, know what day of the week any date was, play Mozart by ear? His special skill?
It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.
I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it.
Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now.
At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:
A's parents: Is that your son out there in the green shirt?
Me: Yes, that's Bambam.
A's parents: How old is he?
Me: He's 7.
A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?
Me: Oh, no. He's autistic. And yes, he is big. And athletic.
A's parents: Is that his special skill, athletics?
And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it.
I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.
It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.
I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it.
Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now.
At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:
A's parents: Is that your son out there in the green shirt?
Me: Yes, that's Bambam.
A's parents: How old is he?
Me: He's 7.
A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?
Me: Oh, no. He's autistic. And yes, he is big. And athletic.
A's parents: Is that his special skill, athletics?
And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it.
I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.
Wednesday, July 10, 2013
Anxiety
Sometimes the strangest things will set off Bambam's anxiety. And I don't know why. Recently we were at a sports festival at the fun house. And Bambam was having a great weekend. He tolerated crowds much better than in the past. We attended the small concert on Friday night where he had fun dancing with the other kids and listening to the music. We spent Saturday at the pool which was very crowded and he handled it just like a pro.
Encouraged by Friday night's success, we then went to the amphitheater for Saturday's concert. He was immediately tense. It was louder, there were more people, seating was at a premium. We finally found seating on the outskirts, which was better for him anyway.
There were several vender booths around, one being a "stuffed banana" booth. I'm not really sure what you have to do to a banana to stuff it, nor do I want to know. I like my bananas in there natural state, thank you very much. But sitting in a chair in front of this booth was a HUGE toy banana with a face including a big, red nose. Bambam was intrigued by this banana and especially the nose which he took to "tweaking". He would run over, tweek the nose, then run back to where we were sitting. He wasn't really bothering anyone, lots of kids were running around. So we simply watched him and let it go.
After about half a dozen trips, we could see the vender say something to him. We couldn't here him. But he was smiling, didn't appear to be raising his voice or have any concerning body language so we weren't too worried about it. Bambam came back to his chair and said "don't touch nose". I'm sure he was echoing what the vendor had said to him. Which is totally fine. If every kid tweaked the banana nose, it would probably fall off. And perhaps we were a bit too lenient in letting Bambam do it over and over. Seems we are much more accepting of borderline behavior from our special needs kid than we are of our typical kids. But that is really a topic for another post.
Anyway...its now a couple of weeks later. And Bambam is still showing signs of anxiety about the "banana man". Anywhere we go he asks "Banana man be there?" At night he asks "Banana man went home?" For whatever reason, this exchange bothered him greatly and is now a source of anxiety. And I can't really figure out why. The man was not angry or threatening. It seemed like a benign interaction. The only thing I can piece together is that he was already stressed by the crowds, noise, music and the banana man is what he is associating with that stress and anxiety. But that is just my guess. Parts of that boy are still a puzzle to me.
Encouraged by Friday night's success, we then went to the amphitheater for Saturday's concert. He was immediately tense. It was louder, there were more people, seating was at a premium. We finally found seating on the outskirts, which was better for him anyway.
There were several vender booths around, one being a "stuffed banana" booth. I'm not really sure what you have to do to a banana to stuff it, nor do I want to know. I like my bananas in there natural state, thank you very much. But sitting in a chair in front of this booth was a HUGE toy banana with a face including a big, red nose. Bambam was intrigued by this banana and especially the nose which he took to "tweaking". He would run over, tweek the nose, then run back to where we were sitting. He wasn't really bothering anyone, lots of kids were running around. So we simply watched him and let it go.
After about half a dozen trips, we could see the vender say something to him. We couldn't here him. But he was smiling, didn't appear to be raising his voice or have any concerning body language so we weren't too worried about it. Bambam came back to his chair and said "don't touch nose". I'm sure he was echoing what the vendor had said to him. Which is totally fine. If every kid tweaked the banana nose, it would probably fall off. And perhaps we were a bit too lenient in letting Bambam do it over and over. Seems we are much more accepting of borderline behavior from our special needs kid than we are of our typical kids. But that is really a topic for another post.
Anyway...its now a couple of weeks later. And Bambam is still showing signs of anxiety about the "banana man". Anywhere we go he asks "Banana man be there?" At night he asks "Banana man went home?" For whatever reason, this exchange bothered him greatly and is now a source of anxiety. And I can't really figure out why. The man was not angry or threatening. It seemed like a benign interaction. The only thing I can piece together is that he was already stressed by the crowds, noise, music and the banana man is what he is associating with that stress and anxiety. But that is just my guess. Parts of that boy are still a puzzle to me.
Tuesday, July 9, 2013
The Look
We were back at the fun house this past weekend. And it was First Friday. Which means that downtown is packed with a festive environment of sidewalk musicians, art, vendors, beer and wine tasting, and all the quaint stores are open late. It also means crowds and noise and chaos.
But, since Bambam has been doing so many great things lately, we thought we would try it. First up was pizza by the slice from the hole in the wall pizza joint that we like. Bambam loves their pizza and we usually get it when we go downtown. But its not usually this crowded. As soon as we entered, he stopped in his tracks and grew tense. He had told me right before entering that he needed to use the bathroom. So, even though he said immediately upon entering that he wanted to "go back outside" I made him go use the bathroom first. I barely had his shorts back up before he bolted out the bathroom door and made a beeline outside. No way was he staying or going back inside that crowded place.
On my way chasing him outside, I spotted a mom pushing a special stoller with a 7 or 8 year old girl in it. She caught my eye, she smiled at me as I chased Bambam out the door as he's yelling "go outside now, go outside NOW". And I knew, she knew. She was "our kind". With no words her look and smile encouraged me. She let me know that she understood, I was not alone. We were doing OK. A thousand words and thoughts were exchanged in that silence. And I smiled back hoping to convey to her what she had given me in that brief, silent exchange.
But, since Bambam has been doing so many great things lately, we thought we would try it. First up was pizza by the slice from the hole in the wall pizza joint that we like. Bambam loves their pizza and we usually get it when we go downtown. But its not usually this crowded. As soon as we entered, he stopped in his tracks and grew tense. He had told me right before entering that he needed to use the bathroom. So, even though he said immediately upon entering that he wanted to "go back outside" I made him go use the bathroom first. I barely had his shorts back up before he bolted out the bathroom door and made a beeline outside. No way was he staying or going back inside that crowded place.
On my way chasing him outside, I spotted a mom pushing a special stoller with a 7 or 8 year old girl in it. She caught my eye, she smiled at me as I chased Bambam out the door as he's yelling "go outside now, go outside NOW". And I knew, she knew. She was "our kind". With no words her look and smile encouraged me. She let me know that she understood, I was not alone. We were doing OK. A thousand words and thoughts were exchanged in that silence. And I smiled back hoping to convey to her what she had given me in that brief, silent exchange.
Tuesday, June 18, 2013
Summer...Again
Summers are always hard with Bambam. Both Mr. Fixit and I work. Granted I only work part-time, but still need some sort of day care for about 25 hours a week. In the past we have muddled through with a hodge podge of grandparents, brother's help, and a very flexible work schedule for both myself and Mr. Fixit.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.
Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.
Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.
Monday, May 20, 2013
Living in Fear
The story of Mikaela Lynch grips my heart. It squeezes it until I feel like I can't breath. This is the story of my nightmares. Like so many parents of children with autism, I fear not being able to protect my child at all times.
Although Bambam is verbal, can tell you his name, Mr. Fixit's name, my name, the street he lives on (although not the house number for fear he'll share it with every stranger he meets), he still has no clear recognition of danger. He does not understand natural consequences. He is impulsive, bolts sometimes for no apparent reason. And like many, many autistic kids, he loves water. The combination of these things gives me nightmares. Literally. Many nights I've woken up in a cold sweat, and I tip toe into Bambam's room to touch his sweet face to reassure myself that he is fine. I stand there and listen to his even breathing.
It is an almost oppressive responsibility to keep someone safe that doesn't understand cause and effect, that is extremely impulsive. Who will bolt across a parking lot without looking. Who will jump into a pool without knowing how deep it is (and he can't yet swim, after 2 years of swimming lessons). Who will talk to any stranger in the store. When he looks over the railing of a bridge or a deck, someone always holds the back of him. He leans so far over... I cannot even finish the sentence.
It is frightening. It is overwhelming. I try not to think about it. And then I read a story like Mikaela's. And my heart breaks for her family. And I pray for their strength and peace. I pray that others will offer them support and understanding. I pray for all the other parents of autistic kids who's nightmares have been rekindled just like mine.
Although Bambam is verbal, can tell you his name, Mr. Fixit's name, my name, the street he lives on (although not the house number for fear he'll share it with every stranger he meets), he still has no clear recognition of danger. He does not understand natural consequences. He is impulsive, bolts sometimes for no apparent reason. And like many, many autistic kids, he loves water. The combination of these things gives me nightmares. Literally. Many nights I've woken up in a cold sweat, and I tip toe into Bambam's room to touch his sweet face to reassure myself that he is fine. I stand there and listen to his even breathing.
It is an almost oppressive responsibility to keep someone safe that doesn't understand cause and effect, that is extremely impulsive. Who will bolt across a parking lot without looking. Who will jump into a pool without knowing how deep it is (and he can't yet swim, after 2 years of swimming lessons). Who will talk to any stranger in the store. When he looks over the railing of a bridge or a deck, someone always holds the back of him. He leans so far over... I cannot even finish the sentence.
It is frightening. It is overwhelming. I try not to think about it. And then I read a story like Mikaela's. And my heart breaks for her family. And I pray for their strength and peace. I pray that others will offer them support and understanding. I pray for all the other parents of autistic kids who's nightmares have been rekindled just like mine.
Wednesday, February 27, 2013
The Report Card
We recently received Bambam's first report card. To be fair, we did receive progress reports in preschool and kindergarten. But this was his first "real" report card from first grade. And WOW. Talk about depressing. The entire report card was filled with "n/a's". And I mean the entire thing, no other marks at all, just "n/a". Even though I know exactly where my child is developmentally, this still makes me take a step back, sit down, and breath deeply so I won't cry. I've said it before and I'll say it again: seeing in black and white exactly what my child cannot do is one of the worst things about being a special needs parent for me. I really don't need to be reminded, I live it every day.
This report card seems worthless to me. I'm not sure why the school even bothers to send it home, other than I'm sure it's required by some stupid administrative rule. And I'm sure his teacher likes filling it out about as much as I like receiving it. Who wants to focus on what a child cannot do?
Apparently not Bambam's teacher. Because in addition to the report card, the envelope held a letter written by her. The first sentence said: "Bambam has made steady progress since the beginning of the year." And then she listed items that he CAN do or where he has made significant progress. These are not things measured on the report card of a typical first grader. They included items such as
As for the report card, they can keep that. I'm keeping the letter.
This report card seems worthless to me. I'm not sure why the school even bothers to send it home, other than I'm sure it's required by some stupid administrative rule. And I'm sure his teacher likes filling it out about as much as I like receiving it. Who wants to focus on what a child cannot do?
Apparently not Bambam's teacher. Because in addition to the report card, the envelope held a letter written by her. The first sentence said: "Bambam has made steady progress since the beginning of the year." And then she listed items that he CAN do or where he has made significant progress. These are not things measured on the report card of a typical first grader. They included items such as
- Greeting peers by name and making appropriate eye contact
- Having short, appropriate give and take conversations with peers
- Reaching conclusions after hearing spoken information; expressing his conclusions
- Using a quiet voice when interacting with peers and adults
- Accepting of "now" and "later", will concentrate on work now for a reward later
- Able to spend up to 30 minutes in the classroom and remain calm with normal activity/noise level of peers
- Participating in PE and Art with his class
- Beginning to do academic activities in the classroom with an aid, or with a peer but no adult supervision (HUGE!)
As for the report card, they can keep that. I'm keeping the letter.
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