Dear couple standing behind us in line at the grocery store,
I'm sure you are usually very nice, polite, and respectful people. But not always.
We could hear you. I can assure that while you were whispering about my poor parenting and his bad behavior and maybe there is something wrong with him, that there is nothing wrong with my son's hearing. If I heard you, I can guarantee he did too. His hearing is 10 times better than mine. He can hear a hushed conversation in the next room through a closed door. Yes, he heard you talking about him.
And the pointing and furtive glances were a little obvious.
I realize his behavior is different. It can be almost unbearable on the bad days. A meltdown from sensory overload in the middle of a grocery store is not fun for anyone. In the entire store. But today was not a bad day. Today was actually a pretty good day. I would even consider it a win.
You see, he did his very best to keep it together while we stopped at the grocery store for a couple of needed items on our way home. This was after a full day of school and an additional 1.5 hours of speech therapy.
For my son who is autistic, a full 6 hours of school and the speech therapy on top of it pretty much takes everything he has. But I made the decision to push him a little today and make the added stop on the way home. And he was working really hard to maintain during this stop. Yes, he was bouncing around more than most kids would. And yes, he was talking a little too loudly, and about the same thing over and over (wanting to eat the bagel he had selected). And I'm sorry he bumped into you, but he did stop his verbal stimming (look it up) and said "I sorry". So, I honestly think he did a great job. A definite win.
I realize that you didn't understand. Some times I think it's easier when he has a really bad day. At least then it is obvious to most people that he has special needs and is not just misbehaving. But on the good days, when he could almost "pass" his challenges are not as obvious. What looks like a typical kid misbehaving and acting spoiled is actually a child with challenges working really hard to mitigate them. At a time when he deserves praise and acknowledgement, you are judging and condemning him. And me, but I don't really care about me. I've grown pretty thick skin.
So yes, you heard me right as we were walking out of the store. I did tell my son that he did a great job. That I was very proud of him for doing such a good job in the store. I saw you turn around and give me that "look". Was it disapproval, disbelief, disdain? I'm not sure but it definitely wasn't a look of encouragement or understanding, that I know for sure.
I wasn't sure how to respond to your look. I honestly don't encounter that look very often. I'm grateful that we most often encounter understanding, encouragement, and accommodations. So your attitude, your look, took me a little by surprise. Not knowing how to react, I simply smiled at you and guided my son in the other direction while he happily munched on his bagel.
I realize the world is full of uneducated, judgmental people. And I simply do not have time to education all of them. My priority is my son. But I would like to ask of you just one simple thing. Be careful when you judge what you see. Things are not always as they appear. Sometimes a smile of encouragement might be more helpful than a judgmental sneer. A little kindness goes a long way. Just a thought. It might make some mama's day just a little bit brighter.
Signed,
One proud mama of her special boy
My Side of Typical
Monday, March 2, 2015
Friday, February 20, 2015
Never Too Late
The Boy is reading.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
Thursday, February 12, 2015
Echolalia
Back when we were trying to get a diagnosis, any diagnosis, for The Boy and I was asked about echolalia I said he doesn't do that. And I was wrong. I was not completely versed (probably still not) in the subtleties of echolalia. The Boy most certainly does echo words and phrases, its just not always very obvious. And I am learning to see the different situation where he really does use echolalia.
When I look back now (hind sight is much closer to 20/20) I can see that whenever we asked if he wanted milk or water, he always answered water. Or whatever the last choice was. I finally figured this out by asking the same question in different orders a few times in a row.
Do you want to wear jeans or sweats?
Sweats.
Do you want to wear sweats or jeans?
Jeans.
All within one minute of each other. We've now learned to wait a few beats, then ask Which ones do you want? And then he can usually tell us what he really wants. Thankfully the days of meltdowns over misunderstanding his choices are (mostly) over.
I picked up on another subtle echo just last week. As I talked about in my post "We Survived...I Think", The Boy has had one illness after another this fall/winter. Last week when he came down with another (thankfully short lived) virus he started asking "You OK?" all the time. And I couldn't figure out why he kept asking me if I was OK. Until I saw the sniffles and runny nose. And it finally dawned on me, he was trying to tell me that he wasn't OK. So the next time he asked me I didn't just answer "Yes I'm fine", I then asked him if he was OK. And he said "No, don't feel good".
When ever The Boy is sick we ask him (probably too many times) "Are you OK"? So naturally, when he doesn't feel good he echoes "You OK"? It is not obvious (at least it wasn't to me initially) but he is echoing what we say to him when he's sick. Really, now that I'm writing about it, it is sort of obvious.
He does something similar whenever he has an accident or something breaks. He will yell "I OK!" Because what is the first thing you say when an accident occurs? "Are you OK?" So he gets straight to the point and the first thing he says is "I OK". Whenever we hear those 2 words, we know we need to go investigate. This may not be a true case of echolalia, but it does show how he makes strong associations between phrases and events.
I'm sure I'll discover more and more instances of where he actually does echo words and phrases. Its a never ending learning curve for me.
When I look back now (hind sight is much closer to 20/20) I can see that whenever we asked if he wanted milk or water, he always answered water. Or whatever the last choice was. I finally figured this out by asking the same question in different orders a few times in a row.
Do you want to wear jeans or sweats?
Sweats.
Do you want to wear sweats or jeans?
Jeans.
All within one minute of each other. We've now learned to wait a few beats, then ask Which ones do you want? And then he can usually tell us what he really wants. Thankfully the days of meltdowns over misunderstanding his choices are (mostly) over.
I picked up on another subtle echo just last week. As I talked about in my post "We Survived...I Think", The Boy has had one illness after another this fall/winter. Last week when he came down with another (thankfully short lived) virus he started asking "You OK?" all the time. And I couldn't figure out why he kept asking me if I was OK. Until I saw the sniffles and runny nose. And it finally dawned on me, he was trying to tell me that he wasn't OK. So the next time he asked me I didn't just answer "Yes I'm fine", I then asked him if he was OK. And he said "No, don't feel good".
When ever The Boy is sick we ask him (probably too many times) "Are you OK"? So naturally, when he doesn't feel good he echoes "You OK"? It is not obvious (at least it wasn't to me initially) but he is echoing what we say to him when he's sick. Really, now that I'm writing about it, it is sort of obvious.
He does something similar whenever he has an accident or something breaks. He will yell "I OK!" Because what is the first thing you say when an accident occurs? "Are you OK?" So he gets straight to the point and the first thing he says is "I OK". Whenever we hear those 2 words, we know we need to go investigate. This may not be a true case of echolalia, but it does show how he makes strong associations between phrases and events.
I'm sure I'll discover more and more instances of where he actually does echo words and phrases. Its a never ending learning curve for me.
Wednesday, January 7, 2015
We Survived...I Think
I don't know about anyone else, but I am ready to be done with 2014 and start fresh and new with 2015. I hate to curse myself by saying it out loud, but I think we just may have survived it. It has been a rough year, especially the fall/early winter.
Bambam has been just awful since September. I know that I'm not supposed to admit that and say it out loud, but there it is. He has tried my patience and worn out every last one of my nerves. And I mean Every. Last. One. And I can't help thinking, if its been this bad for me then how much more immensely difficult has it been for him. Because I know behavior is communication, so all his miserably awful behavior was communicating to me how difficult its been for him. When in the midst of it, it is sometimes difficult to remember that. All I can see is a whiny, clingy, out of control child. And I have to remind myself to look for the reasons behind the behavior.
If I'm honest, it probably all started back in the fall of 2013 when Miracle Boy left for college. This was a huge change for Bambam, "Brother" was gone. Change is difficult for Bambam. He asked daily, sometimes hourly, where's Brother? When Brother home? I see Brother? He missed him terribly. And then Brother came home in November. Just to leave again in February, and this time he hasn't returned home. At least not to live. He visits occasionally, but he no longer lives at home. It is a new normal, for everyone.
Then, 2 weeks after school started in September, we moved Bambam to a new school. Everything he'd known about school for the past 3 years, gone. A whole new school, new building, new teachers, new aids, new SLP, new OT, new PT, new peers both special needs and typically developing. Everything was new. Have I mentioned that change is really hard for him? There were many anxious mornings, but we were muddling through.
Then the days started getting shorter and the time changed. Talk to any autism parent, we HATE the time change. It totally messes with our kids. Bambam has an incredible internal clock. Since he was a tiny infant you could set your watch by when he woke, slept, ate, etc. Try telling a kid like that, with limited verbal communication skills and no time telling skills, they have to change all of their internal times by an hour overnight. To say it totally messes him up is an understatement. And we started having more anxiety and some sleepless nights and some new fears.
Then the illnesses started. I'm not sure what it was, perhaps a new school means a new germ pool (are they school specific?). But my kid who has always been very healthy with rarely even a sniffle started to come down with one thing after another. Sinus infection, noro virus, ear infection, noro virus again (lucky us), another ear infection. It seemed like he was rarely healthy. And the clingyness began. He wouldn't let me out of his sight. All of his whiny, clingy, miserable little self constantly around me.
Then, The Quiet One moved out (and into Miracle Boy's apartment, but that is another post) mid-October. And all of a sudden, Bambam was alone at home, no brothers. I did mention change is really, really, really hard for him, right? I think this year has had the perfect storm of changes for Bambam. He was beside himself, inconsolable. At times he would just start crying, no obvious reason.
By the end of October he was sleeping maybe 3 or 4 hours a night, if that. He had become fearful of the dark, any noise he couldn't "see", being separated from me, being in his own bed or even his own room, wasn't eating, had several accidents at school... The list could go on and on. He actually cried when I put him on the school bus, clinging to me. He's never cried on the school bus, he loves it. We were almost back to the days of his toddler or preschool years where he thought he was my appendage. Seriously, he never wandered more than 18 inches from me, followed me from room to room, sat outside the bathroom door talking to me the whole time (mom, you there? you OK? almost done? mom?). If I did have to leave in the evening for any reason, he cried the whole time I was gone. I'm sure that made Mr. Fixit feel wonderful. In a word, it was dreadful.
And just for good measure, at the end of the year we throw in the holidays. All the decorations in the house changed, a tree in the house, visitors in and out all the time, going to visit relatives constantly, different food and treats, and no school for 2 weeks. The holidays are difficult in a good year. And this was not a good year. This year they were nearly impossible. We never did decorate our tree. Mr. Fixit put lights on it the day we brought it home and that was it. We had a naked lit tree. That fell over 3 days before Christmas. Breaking the lights. It seemed like a fitting punctuation mark to our year.
But I am now putting that all behind us. With the start of the New Year Bambam is finally healthy, back to running gleefully to the school bus and eating us out of house and home. These are good signs. Here's hoping for a great 2015!
Bambam has been just awful since September. I know that I'm not supposed to admit that and say it out loud, but there it is. He has tried my patience and worn out every last one of my nerves. And I mean Every. Last. One. And I can't help thinking, if its been this bad for me then how much more immensely difficult has it been for him. Because I know behavior is communication, so all his miserably awful behavior was communicating to me how difficult its been for him. When in the midst of it, it is sometimes difficult to remember that. All I can see is a whiny, clingy, out of control child. And I have to remind myself to look for the reasons behind the behavior.
If I'm honest, it probably all started back in the fall of 2013 when Miracle Boy left for college. This was a huge change for Bambam, "Brother" was gone. Change is difficult for Bambam. He asked daily, sometimes hourly, where's Brother? When Brother home? I see Brother? He missed him terribly. And then Brother came home in November. Just to leave again in February, and this time he hasn't returned home. At least not to live. He visits occasionally, but he no longer lives at home. It is a new normal, for everyone.
Then, 2 weeks after school started in September, we moved Bambam to a new school. Everything he'd known about school for the past 3 years, gone. A whole new school, new building, new teachers, new aids, new SLP, new OT, new PT, new peers both special needs and typically developing. Everything was new. Have I mentioned that change is really hard for him? There were many anxious mornings, but we were muddling through.
Then the days started getting shorter and the time changed. Talk to any autism parent, we HATE the time change. It totally messes with our kids. Bambam has an incredible internal clock. Since he was a tiny infant you could set your watch by when he woke, slept, ate, etc. Try telling a kid like that, with limited verbal communication skills and no time telling skills, they have to change all of their internal times by an hour overnight. To say it totally messes him up is an understatement. And we started having more anxiety and some sleepless nights and some new fears.
Then the illnesses started. I'm not sure what it was, perhaps a new school means a new germ pool (are they school specific?). But my kid who has always been very healthy with rarely even a sniffle started to come down with one thing after another. Sinus infection, noro virus, ear infection, noro virus again (lucky us), another ear infection. It seemed like he was rarely healthy. And the clingyness began. He wouldn't let me out of his sight. All of his whiny, clingy, miserable little self constantly around me.
Then, The Quiet One moved out (and into Miracle Boy's apartment, but that is another post) mid-October. And all of a sudden, Bambam was alone at home, no brothers. I did mention change is really, really, really hard for him, right? I think this year has had the perfect storm of changes for Bambam. He was beside himself, inconsolable. At times he would just start crying, no obvious reason.
By the end of October he was sleeping maybe 3 or 4 hours a night, if that. He had become fearful of the dark, any noise he couldn't "see", being separated from me, being in his own bed or even his own room, wasn't eating, had several accidents at school... The list could go on and on. He actually cried when I put him on the school bus, clinging to me. He's never cried on the school bus, he loves it. We were almost back to the days of his toddler or preschool years where he thought he was my appendage. Seriously, he never wandered more than 18 inches from me, followed me from room to room, sat outside the bathroom door talking to me the whole time (mom, you there? you OK? almost done? mom?). If I did have to leave in the evening for any reason, he cried the whole time I was gone. I'm sure that made Mr. Fixit feel wonderful. In a word, it was dreadful.
And just for good measure, at the end of the year we throw in the holidays. All the decorations in the house changed, a tree in the house, visitors in and out all the time, going to visit relatives constantly, different food and treats, and no school for 2 weeks. The holidays are difficult in a good year. And this was not a good year. This year they were nearly impossible. We never did decorate our tree. Mr. Fixit put lights on it the day we brought it home and that was it. We had a naked lit tree. That fell over 3 days before Christmas. Breaking the lights. It seemed like a fitting punctuation mark to our year.
But I am now putting that all behind us. With the start of the New Year Bambam is finally healthy, back to running gleefully to the school bus and eating us out of house and home. These are good signs. Here's hoping for a great 2015!
Tuesday, December 9, 2014
Never, For ANY Reason
People have asked about my thoughts on London McCabe's death. I've never written about any of the well publicized incidents of autistic children being killed by caregivers. There are lots of bloggers out there who cover the entire gamut of reactions when these terrible incidents happen. I really don't need to throw my hat in the ring too. But, just because I've been silent doesn't mean I don't have a reaction. Believe me I do, its like a punch in the gut. And my heart aches. For everyone involved.
I look at London's school picture with his blonde hair and blue eyes and pilot's hat and impish grin, and I see a child that could be my sweet boy's twin. The resemblance is not lost on me. My own impish, blonde, blue eyed boy loves airplanes too. And my heart aches even more.
As a fellow autism momma, I get it. I get how hard it can be. I know how isolating and overwhelming it can be when you are dragging your 4.5' tall, 75 lb boy out of the pumpkin patch (or the store, or the restaurant, or the park, or the birthday party, or...) where he just completely lost control. I have suffered the bruises from his kicks and punches while trying to get home where he can find his calm. I know how humiliating it can feel when everyone, and I mean EVERYONE, is watching while this takes place. And I also hear the whispers: What is wrong with that boy, He's too old to act like that, He needs discipline... And I too want to scream to the world: He's not having a temper tantrum, he's melting down because it all just became too much and he cannot process it. He's autistic, not spoiled! And my heart aches.
I've been there at 2:00 am when he is sick, but doesn't understand body queues and doesn't have the language to say I'm going to be sick. I know how tired you are while you clean up vomit yet again from his bedding, or the just cleaned carpets, or even from all over the toilet when you actually did manage to get him into the bathroom. I know the feeling of vomit running down your shirt, in your hair, all over you and him as you try to show him how to lean over the toilet. But he fights you because this feeling of stuff coming up from his stomach is scarey and he doesn't understand and he's in a panic. So he fights you, trying to run away. All while still vomiting. IT IS EVERYWHERE. I've felt the exhaustion of going through it several times a night, for several nights. The feeling of defeat, that you just cannot possibly do it any more. And yet you know tomorrow is another day you have to face. And my whole body aches along with my heart.
I know what it is like to be so completely exhausted that you can no longer think straight and you probably shouldn't be driving your son to speech therapy because its no longer safe. I've lived through the months of him not sleeping for more than 3 hours a night. I've spent many nights with him in my bed, his knees in my back, his toes wedged into my calves so hard it leaves bruises. I've woken up to bloody noses from his hand flying out and hitting me in the face while he sleeps. I've tried sleeping on the 6 inches of real estate at the very edge of the bed, afraid to move him, afraid to go find somewhere else to sleep because he's finally asleep. And under no circumstances will I do ANYTHING that could possibly wake him up. So I lay there awake, with an aching heart.
I have had the days where I stand under the hot stream of water in the shower and sob. Heart wrenching, soul splitting sobs. The kind that drain every last ounce of energy you had left, if there was any. And you pray the sound of the water covers the sounds of your sobs.
I've been there, know the feeling of just wanting to crawl into bed and shut everything out andsleep hibernate for weeks on end. Because there are days when the complete exhaustion, overwhelming responsibility, endless repeat of the same day after day after day is more than you can bear and it all feels so futile. Please believe me when I say that I have been there.
But for as dark as those moments, hours, days, or even weeks can be; it is never, for ANY reason an excuse to cause harm. EVER. That child, that precious child, is a human being just like you or I. He lives and breathes and loves and laughs and grows. Perhaps it looks different, perhaps its not the way you or I do it. But its there, I promise you. And its worth looking for. And its worth watching. And its worth encouraging. He is worth it. Please know, he is worth it.
I look at London's school picture with his blonde hair and blue eyes and pilot's hat and impish grin, and I see a child that could be my sweet boy's twin. The resemblance is not lost on me. My own impish, blonde, blue eyed boy loves airplanes too. And my heart aches even more.
As a fellow autism momma, I get it. I get how hard it can be. I know how isolating and overwhelming it can be when you are dragging your 4.5' tall, 75 lb boy out of the pumpkin patch (or the store, or the restaurant, or the park, or the birthday party, or...) where he just completely lost control. I have suffered the bruises from his kicks and punches while trying to get home where he can find his calm. I know how humiliating it can feel when everyone, and I mean EVERYONE, is watching while this takes place. And I also hear the whispers: What is wrong with that boy, He's too old to act like that, He needs discipline... And I too want to scream to the world: He's not having a temper tantrum, he's melting down because it all just became too much and he cannot process it. He's autistic, not spoiled! And my heart aches.
I've been there at 2:00 am when he is sick, but doesn't understand body queues and doesn't have the language to say I'm going to be sick. I know how tired you are while you clean up vomit yet again from his bedding, or the just cleaned carpets, or even from all over the toilet when you actually did manage to get him into the bathroom. I know the feeling of vomit running down your shirt, in your hair, all over you and him as you try to show him how to lean over the toilet. But he fights you because this feeling of stuff coming up from his stomach is scarey and he doesn't understand and he's in a panic. So he fights you, trying to run away. All while still vomiting. IT IS EVERYWHERE. I've felt the exhaustion of going through it several times a night, for several nights. The feeling of defeat, that you just cannot possibly do it any more. And yet you know tomorrow is another day you have to face. And my whole body aches along with my heart.
I know what it is like to be so completely exhausted that you can no longer think straight and you probably shouldn't be driving your son to speech therapy because its no longer safe. I've lived through the months of him not sleeping for more than 3 hours a night. I've spent many nights with him in my bed, his knees in my back, his toes wedged into my calves so hard it leaves bruises. I've woken up to bloody noses from his hand flying out and hitting me in the face while he sleeps. I've tried sleeping on the 6 inches of real estate at the very edge of the bed, afraid to move him, afraid to go find somewhere else to sleep because he's finally asleep. And under no circumstances will I do ANYTHING that could possibly wake him up. So I lay there awake, with an aching heart.
I have had the days where I stand under the hot stream of water in the shower and sob. Heart wrenching, soul splitting sobs. The kind that drain every last ounce of energy you had left, if there was any. And you pray the sound of the water covers the sounds of your sobs.
I've been there, know the feeling of just wanting to crawl into bed and shut everything out and
But for as dark as those moments, hours, days, or even weeks can be; it is never, for ANY reason an excuse to cause harm. EVER. That child, that precious child, is a human being just like you or I. He lives and breathes and loves and laughs and grows. Perhaps it looks different, perhaps its not the way you or I do it. But its there, I promise you. And its worth looking for. And its worth watching. And its worth encouraging. He is worth it. Please know, he is worth it.
Sunday, October 5, 2014
Just a Few Hours
Last weekend Bambam participated in the Youth Games. This is a sports clinic hosted by a corporate giant in the city almost 2 hours away from us. It is an introduction to Special Olympics. And although Bambam already participates in Special Olympics, I am always on the look out for events in which he can participate. They offered clinics in basketball, soccer, field games, and golf. Given the choices, Bambam picked golf.
With over 500 participants, their parents, volunteers, and the organizers; it was quite the organized chaos. But the Polar Bear from the plunge was there to comfort all the participants. I do not pretend to understand why seeing pop up canopies causes anxiety but a grown up in a creepy bear suit doesn't. Seriously, I do not get it. But I was grateful the bear was there as it calmed Bambam and took his mind off all the chaos around him. After the opening ceremonies, we went to find his golf group.
As I handed Bambam off to his group leaders I left them with a piece of advise: "When you give him a golf club, stand back. He swings hard and fast." They chuckled with an OK. But I was serious. That child is all about power, he has absolutely no finesse. I watched him walk off with the other four 8 year olds.
Their group started at putting. Bambam has absolutely no use for putting. You can imagine how thrilled he was. But with constant reminders to use small swings, he did pretty good; actually making several puts. But, he was super excited to move on to chipping.
Being the only left handed swinger, Bambam had a station all to himself. The volunteer manning that station put a ball on the mat, handed Bambam a club and asked him if he could hit the ball. Bambam let loose on that ball. He hit a perfect chip shot almost 50 yards. Only problem was that the field was only about 50 yards wide, with another group of kids on the other side hitting our direction. An immediate chorus of Fore!, Wow!, Holy Sh*t! rang out. And a small crowd gathered behind Bambam.
So once again there were lots of reminders to use small swings. Bambam hit several chip shots into the hoola hoops laying on the ground about 10 yards out. But every few hits he would get really excited and just let one go. Each time the chorus would ring out and the crowd would grow. Fathers saying "I wish I had a swing like that" and volunteers congratulating Bambam on a great hit. And Bambam started to shine.
When we moved to the other side for the final station the crowd followed him. I warned the volunteer that this was the kid who was chipping the ball from the other side clear over to this side. She nodded, and said they were using "low flight balls" so it would be fine. After the lesson, she gave him a club and let him hit. The ball flew over the field to the pop up canopy where parents were sitting. It actually bounced off the canopy. I'm not sure what a "low flight ball" is supposed to do, but that ball flew just like a regular ball. After telling him what a great hit that was and giving him 20 points for hitting the canopy, the volunteer told him he had to use a plastic club and tennis balls so no one would get hurt. It didn't slow him down. He continued to hit with his whole being, beaming everytime a tennis ball went flying. It was a great day for him.
Later I was asked why I was willing to drive over 3 hours for Bambam to golf for about two and a half hours. And here's the thing. That kid struggles every day. He struggles at school learning to write his name with fingers that don't cooperate. He struggles to make himself understood when he doesn't have the words. He struggles in the grocery store with lights that are too bright and noises too loud. He struggles every day. So if driving for 3 hours gives him the opportunity to shine for a few hours, to excell at something and be a star; I will absolutely do it. Every kid deserves that opportunity. Every kid should have the chance to feel good about themselves and what they CAN do. Even if its just for a few hours.
With over 500 participants, their parents, volunteers, and the organizers; it was quite the organized chaos. But the Polar Bear from the plunge was there to comfort all the participants. I do not pretend to understand why seeing pop up canopies causes anxiety but a grown up in a creepy bear suit doesn't. Seriously, I do not get it. But I was grateful the bear was there as it calmed Bambam and took his mind off all the chaos around him. After the opening ceremonies, we went to find his golf group.
As I handed Bambam off to his group leaders I left them with a piece of advise: "When you give him a golf club, stand back. He swings hard and fast." They chuckled with an OK. But I was serious. That child is all about power, he has absolutely no finesse. I watched him walk off with the other four 8 year olds.
Their group started at putting. Bambam has absolutely no use for putting. You can imagine how thrilled he was. But with constant reminders to use small swings, he did pretty good; actually making several puts. But, he was super excited to move on to chipping.
Being the only left handed swinger, Bambam had a station all to himself. The volunteer manning that station put a ball on the mat, handed Bambam a club and asked him if he could hit the ball. Bambam let loose on that ball. He hit a perfect chip shot almost 50 yards. Only problem was that the field was only about 50 yards wide, with another group of kids on the other side hitting our direction. An immediate chorus of Fore!, Wow!, Holy Sh*t! rang out. And a small crowd gathered behind Bambam.
So once again there were lots of reminders to use small swings. Bambam hit several chip shots into the hoola hoops laying on the ground about 10 yards out. But every few hits he would get really excited and just let one go. Each time the chorus would ring out and the crowd would grow. Fathers saying "I wish I had a swing like that" and volunteers congratulating Bambam on a great hit. And Bambam started to shine.
When we moved to the other side for the final station the crowd followed him. I warned the volunteer that this was the kid who was chipping the ball from the other side clear over to this side. She nodded, and said they were using "low flight balls" so it would be fine. After the lesson, she gave him a club and let him hit. The ball flew over the field to the pop up canopy where parents were sitting. It actually bounced off the canopy. I'm not sure what a "low flight ball" is supposed to do, but that ball flew just like a regular ball. After telling him what a great hit that was and giving him 20 points for hitting the canopy, the volunteer told him he had to use a plastic club and tennis balls so no one would get hurt. It didn't slow him down. He continued to hit with his whole being, beaming everytime a tennis ball went flying. It was a great day for him.
Later I was asked why I was willing to drive over 3 hours for Bambam to golf for about two and a half hours. And here's the thing. That kid struggles every day. He struggles at school learning to write his name with fingers that don't cooperate. He struggles to make himself understood when he doesn't have the words. He struggles in the grocery store with lights that are too bright and noises too loud. He struggles every day. So if driving for 3 hours gives him the opportunity to shine for a few hours, to excell at something and be a star; I will absolutely do it. Every kid deserves that opportunity. Every kid should have the chance to feel good about themselves and what they CAN do. Even if its just for a few hours.
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.
Subscribe to:
Posts (Atom)