**This piece was originally written on September 1, 2011. Before I started blogging, I'd write "notes" in Facebook (it was a thing way back when - not to age myself but a decade ago, it was really a thing). When this popped up in my memories today, I copied and pasted it into the blog. This is where it belongs. When more cross my memories (or if I find where Facebook has them hidden) I'll move more over to the blog.
Parker, My Mountain Mover
September 1, 2011
There is honestly not a single emotion I can think of that describes how I’m feeling right now. Proud and amazed are what come to mind but they just don’t do this feeling justice.
If you’ve known Parker a long time, and especially those who have worked with him – you might want to grab a Kleenex before reading any further. It’s ok… go get one, I’ll wait….. no really, go get one – I promise I’ll wait…………………… and fill in those who haven’t known Parker long on a bit about him.
I often get asked if Parker is high functioning. I wish : ) Parker is moderately impaired by his Fragile X. For the longest time he was very, very verbally limited. His behavior was – well, let’s say “difficult” and know that’s being generous. His sensory issues were significant, hyperarousal was part of our day, and his anxiety – was through the roof. There was a time there were more bruises on my body from his meltdowns than not, aggression was his way of coping. I remember getting calls to the school where he had destroyed an entire classroom – literally, every single item off of every desk, shelf, and reachable place was thrown throughout the room.
We were extremely fortunate to have been able to bring together some of the most incredible people, locally and from afar, to be Parker’s team. No matter the struggle, his team never gave up. Together we have watched him grow, watched him mature and after the addition of the STX209 to his other medications – we watched him come out of the box that Fragile X had put him in.
Outside of Special Olympics – getting Parker to do or go to anything school-related didn’t happen after kindergarten. Kindergarten was the only school open house we attended together as a family – even then he spent most of the open house under the chair at his table. From that point on, I attended them alone.
As you know, over the past 2 years since Parker started this drug trial, we’ve seen significant changes in him. His speech has flourished, his behavior is significantly better, he’s more social, his workload at school has increased tremendously… just to name a few things. As I’ve said many times, this drug opened the lid of the box he was put in by Fragile X and it’s been incredible to see how it’s brought him out of this box. As much as I credit the drug – I credit his team. You never really “leave” Parker’s team just because you are no longer on the IEP invitation. Almost everyone who has ever worked with him still cares, still helps and most of all still believes in him. For each of you and each of his friends he’s made along the way who remain by his side – I thank you for making tonight happen. Without your dedication to him and belief in him, he would never be where he is now, even with the STX209. A drug can do only so much – but one’s belief in you and love for you moves the mountains.
And tonight – he moved a mountain.
Tonight was the open house at the Middle School where Parker attends. Having not attended one since Kindergarten, despite my love and belief that he can do anything – I had my doubts when he said he wanted to go tonight. At our middle school, the open house takes you through every period (minus lunch) of the school day. 10 minutes in each room. Since he wanted to go – my goal was to get him in the door. That was all. Inside the building, long enough to say he had been there. (I know, I know but when you add my anxiety and a zillion other kids with their parents to the mix – he and I achieving that much would’ve made me proud!).
Parker insisted all 4 of us go, Scott, A, Parker, and myself – so we all went. He was a little hesitant to go into the building (he got to go in the back door like he does every day and his para was waiting – our goal was to make this as “normal” as possible for him). He made everyone else go in first – and then in he came. He spent some time on the floor by his locker and outside of Mrs. Reavis (the Special Ed teacher)’s room and really didn’t want to go in there. He listened from the hall as the principal said it was time to go to your first class of the day. Parker looked at me and said, “let’s go”. He called for Scott and A and off we went (without his para). The hall was packed with kids and their parents, none of who I really “saw” even though I smiled and said “hi” because my focus was on Parker making it through the crowd without any problems. He led us to Mr. Hardy’s room and after a brief hesitation outside the door, he came in and sat down. Mr. Hardy we learned has a box of Gushers for Parker as an incentive in his closet. He reached in and took one out of the box and handed it to me for me to use as I saw fit during the evening. I handed them to Parker and for 10 minutes, we listened to Mr. Hardy talk. He passed out a very generic schedule that we were to follow. 1st Hour said “PE/Encore” (or something like that) so when the tone sounded, I looked at Parker and said, “Ok, where do you go 1st?” Parker said, “PE” and off he went into the crowded halls, confidently leading the way to the gym. The gym presentation was in the all-purpose room, where parents and his classmates filled the bleachers. Parker asked if he could sit on the floor by the wall and I said, “of course”. For 10 minutes, we listened to the PE teachers go over their class and the new equipment. When the tone went off, Parker jumped up and I said, “Where next?” The paper said, “PE/Encore” – (and I think something else) Parker walked down the hall to the next classroom. When we walked in his teacher looked at Parker then back in the room and said, “Oh, I’m sorry, someone is in his seat.” Without skipping a beat Parker grabbed my arm and said, “Come on” and led me to a round table where we all 4 sat while we heard about Study skills for the next 10 minutes.
I sat there watching him sitting and listening so intently. I think, for the first time, I really stepped back and saw him as the 12-year-old that he is. Independent, maturing, and really at a place that I had prayed he would get to but at times doubted as possible. It was extremely hard for me not to take a picture – I wanted to share that moment but instead just really savored every second in complete awe that we were actually at the Middle School, in a classroom with him, and he was leading it all. There was no making him do this, there was no pulling him down the hall, there were no reminders to be quiet or to keep his hands to himself. Between each session, as we walked through the halls, more kids than I could count smiled and said “Hi Parker” as we walked amongst them. Every greeting he replied to with a quiet “Hi”, only once with my prompting which ended up being over him saying “hi” so he repeated himself.
As we walked the halls with his peers – all typically developing 12-year-olds, after my anxiety had lessened, I was like – “this is what it’s like… this is what it’s like to be like everyone else, to walk with your child through the halls from class to class at open house… I’m good with this!”
Parker was a little unsure after the Study Skills class where he was to go next – he walked us around the entire building pointing out things like the sun glowing on the doors which is exactly how it looked, and odds and ends. We made our way back to Mrs. Reavis’ room to find out where exactly he was to be at that time and for the next period. For the majority of the rest of the day, he would be in Mrs. Reavis’ room – Parker decided this would be a good time to go home. I spent a few minutes with his teachers and para in that room, we all discussed how very proud we were of him. Mrs. T – his para who was also his para in 2nd grade so she really understood the significance of this night – beamed with pride. She said, “We always knew this was in him, some of us could see it, his humor, his independence, his want to learn – but it was only glimpses and it was only available to a handful of us… now, what we knew was in there all along is out for everyone to see and he couldn’t be more incredible!”
By going to this open house for an entire hour (it lasted an hour and a half) and making it class to class as much as he did, being social with his friends in the halls, sitting nicely and listening intently in each of the presentations he was part of…. He moved a mountain. A mountain he couldn’t have moved without being let out of the box that held him in for so long.
Now, you understand why just being proud and amazed doesn’t do justice to tonight’s accomplishment. There are no words to describe the feeling you have when your child truly moves a mountain.
If you’ve known Parker a long time, and especially those who have worked with him – you might want to grab a Kleenex before reading any further. It’s ok… go get one, I’ll wait….. no really, go get one – I promise I’ll wait…………………… and fill in those who haven’t known Parker long on a bit about him.
I often get asked if Parker is high functioning. I wish : ) Parker is moderately impaired by his Fragile X. For the longest time he was very, very verbally limited. His behavior was – well, let’s say “difficult” and know that’s being generous. His sensory issues were significant, hyperarousal was part of our day, and his anxiety – was through the roof. There was a time there were more bruises on my body from his meltdowns than not, aggression was his way of coping. I remember getting calls to the school where he had destroyed an entire classroom – literally, every single item off of every desk, shelf, and reachable place was thrown throughout the room.
We were extremely fortunate to have been able to bring together some of the most incredible people, locally and from afar, to be Parker’s team. No matter the struggle, his team never gave up. Together we have watched him grow, watched him mature and after the addition of the STX209 to his other medications – we watched him come out of the box that Fragile X had put him in.
Outside of Special Olympics – getting Parker to do or go to anything school-related didn’t happen after kindergarten. Kindergarten was the only school open house we attended together as a family – even then he spent most of the open house under the chair at his table. From that point on, I attended them alone.
As you know, over the past 2 years since Parker started this drug trial, we’ve seen significant changes in him. His speech has flourished, his behavior is significantly better, he’s more social, his workload at school has increased tremendously… just to name a few things. As I’ve said many times, this drug opened the lid of the box he was put in by Fragile X and it’s been incredible to see how it’s brought him out of this box. As much as I credit the drug – I credit his team. You never really “leave” Parker’s team just because you are no longer on the IEP invitation. Almost everyone who has ever worked with him still cares, still helps and most of all still believes in him. For each of you and each of his friends he’s made along the way who remain by his side – I thank you for making tonight happen. Without your dedication to him and belief in him, he would never be where he is now, even with the STX209. A drug can do only so much – but one’s belief in you and love for you moves the mountains.
And tonight – he moved a mountain.
Tonight was the open house at the Middle School where Parker attends. Having not attended one since Kindergarten, despite my love and belief that he can do anything – I had my doubts when he said he wanted to go tonight. At our middle school, the open house takes you through every period (minus lunch) of the school day. 10 minutes in each room. Since he wanted to go – my goal was to get him in the door. That was all. Inside the building, long enough to say he had been there. (I know, I know but when you add my anxiety and a zillion other kids with their parents to the mix – he and I achieving that much would’ve made me proud!).
Parker insisted all 4 of us go, Scott, A, Parker, and myself – so we all went. He was a little hesitant to go into the building (he got to go in the back door like he does every day and his para was waiting – our goal was to make this as “normal” as possible for him). He made everyone else go in first – and then in he came. He spent some time on the floor by his locker and outside of Mrs. Reavis (the Special Ed teacher)’s room and really didn’t want to go in there. He listened from the hall as the principal said it was time to go to your first class of the day. Parker looked at me and said, “let’s go”. He called for Scott and A and off we went (without his para). The hall was packed with kids and their parents, none of who I really “saw” even though I smiled and said “hi” because my focus was on Parker making it through the crowd without any problems. He led us to Mr. Hardy’s room and after a brief hesitation outside the door, he came in and sat down. Mr. Hardy we learned has a box of Gushers for Parker as an incentive in his closet. He reached in and took one out of the box and handed it to me for me to use as I saw fit during the evening. I handed them to Parker and for 10 minutes, we listened to Mr. Hardy talk. He passed out a very generic schedule that we were to follow. 1st Hour said “PE/Encore” (or something like that) so when the tone sounded, I looked at Parker and said, “Ok, where do you go 1st?” Parker said, “PE” and off he went into the crowded halls, confidently leading the way to the gym. The gym presentation was in the all-purpose room, where parents and his classmates filled the bleachers. Parker asked if he could sit on the floor by the wall and I said, “of course”. For 10 minutes, we listened to the PE teachers go over their class and the new equipment. When the tone went off, Parker jumped up and I said, “Where next?” The paper said, “PE/Encore” – (and I think something else) Parker walked down the hall to the next classroom. When we walked in his teacher looked at Parker then back in the room and said, “Oh, I’m sorry, someone is in his seat.” Without skipping a beat Parker grabbed my arm and said, “Come on” and led me to a round table where we all 4 sat while we heard about Study skills for the next 10 minutes.
I sat there watching him sitting and listening so intently. I think, for the first time, I really stepped back and saw him as the 12-year-old that he is. Independent, maturing, and really at a place that I had prayed he would get to but at times doubted as possible. It was extremely hard for me not to take a picture – I wanted to share that moment but instead just really savored every second in complete awe that we were actually at the Middle School, in a classroom with him, and he was leading it all. There was no making him do this, there was no pulling him down the hall, there were no reminders to be quiet or to keep his hands to himself. Between each session, as we walked through the halls, more kids than I could count smiled and said “Hi Parker” as we walked amongst them. Every greeting he replied to with a quiet “Hi”, only once with my prompting which ended up being over him saying “hi” so he repeated himself.
As we walked the halls with his peers – all typically developing 12-year-olds, after my anxiety had lessened, I was like – “this is what it’s like… this is what it’s like to be like everyone else, to walk with your child through the halls from class to class at open house… I’m good with this!”
Parker was a little unsure after the Study Skills class where he was to go next – he walked us around the entire building pointing out things like the sun glowing on the doors which is exactly how it looked, and odds and ends. We made our way back to Mrs. Reavis’ room to find out where exactly he was to be at that time and for the next period. For the majority of the rest of the day, he would be in Mrs. Reavis’ room – Parker decided this would be a good time to go home. I spent a few minutes with his teachers and para in that room, we all discussed how very proud we were of him. Mrs. T – his para who was also his para in 2nd grade so she really understood the significance of this night – beamed with pride. She said, “We always knew this was in him, some of us could see it, his humor, his independence, his want to learn – but it was only glimpses and it was only available to a handful of us… now, what we knew was in there all along is out for everyone to see and he couldn’t be more incredible!”
By going to this open house for an entire hour (it lasted an hour and a half) and making it class to class as much as he did, being social with his friends in the halls, sitting nicely and listening intently in each of the presentations he was part of…. He moved a mountain. A mountain he couldn’t have moved without being let out of the box that held him in for so long.
Now, you understand why just being proud and amazed doesn’t do justice to tonight’s accomplishment. There are no words to describe the feeling you have when your child truly moves a mountain.
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| Parker and his hamster, Blackie Poops A Lot. |
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