Jaysen was deployed at the time. When he came home, Matthew started speaking in full sentences. Of course, nobody else could understand him but us. He has hearing issues, so his words weren't enunciated perfectly. But they were there.
We didn't pursue the autism diagnosis, because our son was fine.
Right?
Never mind that he lined up his Duplo blox instead of building things with them. He would take cans of soda and stack them up.
He also had this super cute thing he did with his hands. He would bounce up and down and flap his hands, usually while saying "digadigadigadigadiga", just like the 21st Century jingle.
A couple of weeks after Jaysen got home from this last deployment, we were at the beach. Matthew built a sandcastle. He was shoveling dirt into a bucket when he playfully threw a shovelful of sand at Jay. Jay held his foot over the sand castle and said, "Throw sand at me again". So he did. Jaysen stepped on the castle.
"Why did you do that?!?" Matthew was upset.
"I told you not to throw sand at me."
Matthew said, "You told me to throw sand at you. I thought you wanted me to."
Jaysen helped Matthew rebuild the sand castle and all was well again. Matthew said, "Dad, I don't understand sarcasm. You will need to tell me when you're being serious." Even now, Matthew will ask "Are you being serious?"
Last night, we went to Little Caesar's to get pizza for dinner. When we got home, I told Matthew "Man, you don't know what we had to do to get that pizza! Dad had to beat a crippled man with his own cane." DS looked incredulously at his dad. "Did you really?"
When Matthew was itty bitty little, he would only eat something like 5 foods. Red kool-aid, pizza, french fries, hot dogs, and corn dogs...actually, he would eat the corn bread off of the hot dog. He couldn't eat the hot dog after he ate corn dog. Then, all of a sudden, he would peel the corn bread off of the hot dog. He wouldn't eat the corn bread. But then, he couldn't just eat a regular hot dog.
Other people (helpfully) provided suggestions on getting him to eat other foods. Naturally, they believed they could "fix" Matthew if only given the opportunity. "You're going to sit there until your plate is clean." Matthew would rather starve than eat something he doesn't like. They are shocked when they find out we fix two meals all of the time. One for us, one for Matthew. "Back in my day, I would have gone to bed without dinner."
I know I'm rambling.
I'm sorry.
Matthew started junior high a couple of months ago. The ringing of bells, the rush of students, the timed breaks. I believe junior high is a meltdown waiting to happen. DS wore his coat all day and carried 7 books around in his backpack because he couldn't concentrate enough to open the combination on his locker. The one time he did figure it out, he was late for class.
He *hates* being late.
We have a 504 for ADHD, but the school wasn't exactly forthcoming with what assistance is available. They never said, "We can do XYZ." It was, "what else do you think he needs?"
The psychologist was a fountain of information. She told us the difference between a 504 and an IEP. She told us what to ask for on the IEP. "When Matthew gets to school, he's surrounded by hundreds of kids he doesn't know. The bright lights, the hundreds of voices echoing off the walls, bells ringing, changing subjects with new teachers, it's all so confusing. When he gets home, he's just done. Homework doesn't help him, because he is past the point of being able to learn anything once he gets home."
Initially, Matthew didn't want everyone to know he has autism.
Matthew said, "I've had it my whole life. So it doesn't make me any different." And he's not.
That's right. He's still the same child I absolutely adore. I can't even begin to express how blessed I am to be his mom. If I could take away his autism, I wouldn't. Some of my favorite things about him are because of the autism.
He's so innocent and shy. And funny when he's not even trying to be. He's always trying to figure out where he fits in and studying things. ("Why are you laughing? Which part was funny?") He's curious and always trying to figure out why things are the way they are.
A couple of weeks ago, we took him grocery shopping with us. Matthew said, "I need a hug." Right there in the middle of the aisle. I hugged him tight, right there in the middle of the aisle. Then this 13 year old boy held my hand for the rest of the time we were in the store. I'm sure it looks funny to bystanders. But I don't care.
People think I cater to him too much. Now I am past the point of caring. If they can't find something nice to say, then they don't need to be included in our lives. It's really that simple.
I want to tell the world I am proud of my son, who has overcome all of these obstacles in his life. When people look at him like he's weird, I want to scream at them. I want to protect my baby from the mean world. He's scared. He doesn't want to have autism. He doesn't want to be bullied. He doesn't want people to feel sorry for him.
Never mind that he lined up his Duplo blox instead of building things with them. He would take cans of soda and stack them up.
He also had this super cute thing he did with his hands. He would bounce up and down and flap his hands, usually while saying "digadigadigadigadiga", just like the 21st Century jingle.
I figured it was one of those idiosyncracies that made him unique. Until Jenny McCarthy mentioned her son did it, too.
This is the part where I tell you how amazing my son is. He's so kind and soft. He would never in a million years do anything to hurt another person. He makes eye contact. He loves to snuggle. He tells us all the time that he loves us. Every single one of his teachers have always said that he is very respectful.
Which, in my mind, meant he didn't have autism.
He's a very literal person and he doesn't understand sarcasm. Which has been difficult, because my husband and I are sarcastic. I've learned to adjust. But with Jaysen being gone for a year at a time, he has missed alot. Adjusting back to normal life with a "normal" family is difficult under the best of circumstances. Adjusting to a routine that was never really a routine to begin with is even harder.
This is the part where I tell you how amazing my son is. He's so kind and soft. He would never in a million years do anything to hurt another person. He makes eye contact. He loves to snuggle. He tells us all the time that he loves us. Every single one of his teachers have always said that he is very respectful.
Which, in my mind, meant he didn't have autism.
He's a very literal person and he doesn't understand sarcasm. Which has been difficult, because my husband and I are sarcastic. I've learned to adjust. But with Jaysen being gone for a year at a time, he has missed alot. Adjusting back to normal life with a "normal" family is difficult under the best of circumstances. Adjusting to a routine that was never really a routine to begin with is even harder.
A couple of weeks after Jaysen got home from this last deployment, we were at the beach. Matthew built a sandcastle. He was shoveling dirt into a bucket when he playfully threw a shovelful of sand at Jay. Jay held his foot over the sand castle and said, "Throw sand at me again". So he did. Jaysen stepped on the castle.
"Why did you do that?!?" Matthew was upset.
"I told you not to throw sand at me."
Matthew said, "You told me to throw sand at you. I thought you wanted me to."
Jaysen helped Matthew rebuild the sand castle and all was well again. Matthew said, "Dad, I don't understand sarcasm. You will need to tell me when you're being serious." Even now, Matthew will ask "Are you being serious?"
Last night, we went to Little Caesar's to get pizza for dinner. When we got home, I told Matthew "Man, you don't know what we had to do to get that pizza! Dad had to beat a crippled man with his own cane." DS looked incredulously at his dad. "Did you really?"
When Matthew was itty bitty little, he would only eat something like 5 foods. Red kool-aid, pizza, french fries, hot dogs, and corn dogs...actually, he would eat the corn bread off of the hot dog. He couldn't eat the hot dog after he ate corn dog. Then, all of a sudden, he would peel the corn bread off of the hot dog. He wouldn't eat the corn bread. But then, he couldn't just eat a regular hot dog.
Other people (helpfully) provided suggestions on getting him to eat other foods. Naturally, they believed they could "fix" Matthew if only given the opportunity. "You're going to sit there until your plate is clean." Matthew would rather starve than eat something he doesn't like. They are shocked when they find out we fix two meals all of the time. One for us, one for Matthew. "Back in my day, I would have gone to bed without dinner."
Here is where I'm going to climb up on my pedestal for a moment. Please forgive the rant. I'm sorry, but I didn't ask for your advice...I don't care if you would have been whipped with a cane in a public square because you didn't eat your broccoli. I refuse to raise my child the way someone else sees fit. I have been called a bad mother and have even been threatened with child services because "she doesn't care to cook for her child".
I want to scream at that person. "HE HAS AUTISM, YOU SELF-RIGHTEOUS ASSHOLE."
There have been a couple of people that forced food into his mouth (I wasn't there). He vomited all over them. What part of Matthew says "Yes, I would like to try mussels and cucumber?"
I know I'm rambling.
I'm sorry.
Matthew started junior high a couple of months ago. The ringing of bells, the rush of students, the timed breaks. I believe junior high is a meltdown waiting to happen. DS wore his coat all day and carried 7 books around in his backpack because he couldn't concentrate enough to open the combination on his locker. The one time he did figure it out, he was late for class.
He *hates* being late.
We have a 504 for ADHD, but the school wasn't exactly forthcoming with what assistance is available. They never said, "We can do XYZ." It was, "what else do you think he needs?"
If I don't know what is within the realm of possibility, how do I know what to ask for?
All of Matthew's former teachers accepted his quirks and worked around them. In junior high, not so much. Honestly, he's just another face in the crowd. I get it. Keeping up with 200 students is not easy. If I asked for something on the 504, they put it on there. I guess I was expecting them to run through the list "Do you think Matthew needs a reading tutor? Do you think he needs someone to read questions on the test for him?" But that didn't happen.
I told Jaysen we had to get Matthew evaluated for autism.
All of Matthew's former teachers accepted his quirks and worked around them. In junior high, not so much. Honestly, he's just another face in the crowd. I get it. Keeping up with 200 students is not easy. If I asked for something on the 504, they put it on there. I guess I was expecting them to run through the list "Do you think Matthew needs a reading tutor? Do you think he needs someone to read questions on the test for him?" But that didn't happen.
I told Jaysen we had to get Matthew evaluated for autism.
In my heart of hearts, I think we've known for a while this was coming down the pipeline. We knew Matthew was different. Matthew knew he was different. We always told people, "You can't treat Matthew that way. He's different." Really, there were no other words to use. I think when we said that, people heard parents lamenting about their precious little snowflake.
Most of Matthew's teachers were helpful. We had an Individualized Education Plan for his ADHD, but we never had to enforce it. They were accommodating without us needing to flex our "IEP" muscle.
Then came junior high. Now he has seven teachers, which means he is one face out of hundreds. We could no longer depend on teachers singling him out for additional assistance, because quite frankly, they can't afford to do so.
We had to get him evaluated again. Initially, we hesitated because we didn't want to place a label on him. We didn't want to limit him. (We had him evaluated in Florida, but the Physician's Assistant felt there was no need to do additional testing. So we didn't pursue it and we should have.)
A few weeks ago, we took the plunge. After a series of evaluations, the psychologist confirmed what I already knew in my heart. "High functioning autism". If he had been diagnosed a few years ago, they would have called it Asperger's. But now, it's on the autism spectrum.
She said she could tell by the way he responded to her that his answers and mannerisms weren't natural. He had rehearsed it. He was stilted, like he knew what was expected of him, so he reacted accordingly.
She said she could tell by the way he responded to her that his answers and mannerisms weren't natural. He had rehearsed it. He was stilted, like he knew what was expected of him, so he reacted accordingly.
It breaks my heart to think that he felt he wasn't able to just be himself.
The psychologist was a fountain of information. She told us the difference between a 504 and an IEP. She told us what to ask for on the IEP. "When Matthew gets to school, he's surrounded by hundreds of kids he doesn't know. The bright lights, the hundreds of voices echoing off the walls, bells ringing, changing subjects with new teachers, it's all so confusing. When he gets home, he's just done. Homework doesn't help him, because he is past the point of being able to learn anything once he gets home."
Which makes total sense.
One of my friends, who has a daughter with autism, gave me some information about a local organization that helps with things like IEPs. I called them. Her advice was to "write your request and give it to the school". She didn't tell me what I could ask for, either. However, specialists exists that can help with the IEPs and can even go to the school with you to make sure your snowflake is being given the best possible education available.
That night, I googled examples of IEPs. I wish I could remember where I finally found the one I ended up using. I figured I would throw a bunch of stuff and whatever they said yes to is what we would go with.
He already had a 504 in place because of his ADHD and he's colorblind. Instead of requesting an IEP (which could take a couple of months because the approval process is a lengthy one), I requested they add to the existing 504.
Here's a rundown of what is in his 504:
clarification for colors
sit near the teacher, at the front of the room
leave 3 minutes early, arrive up to 3 minutes late without being marked truant (so he can utilize his locker)
allow breaks during class if he's feeling overstimulated, so he can go to a quiet place
complete half of the homework assigned (odds or evens) when practical
There are some people who believe children on the autism shouldn't be included in a class with other children who are learning at a more advanced pace. I would counter with this: Matthew has just as much of a right to an education as any other child in that classroom. The reason why he isn't placed in a special education classroom is frankly nobody's business. He's mainstreamed. He's going to continue to be mainstreamed.
So far, the new adjustments seem to be working. We've avoided meltdowns this week. He hasn't called home complaining of a stomachache. He still hates school, but the anxiety has lessened. Before the diagnosis, he was calling home at least once a week. He was complaining of stomachaches and chest pains.
Anxiety.
One of my friends, who has a daughter with autism, gave me some information about a local organization that helps with things like IEPs. I called them. Her advice was to "write your request and give it to the school". She didn't tell me what I could ask for, either. However, specialists exists that can help with the IEPs and can even go to the school with you to make sure your snowflake is being given the best possible education available.
That night, I googled examples of IEPs. I wish I could remember where I finally found the one I ended up using. I figured I would throw a bunch of stuff and whatever they said yes to is what we would go with.
He already had a 504 in place because of his ADHD and he's colorblind. Instead of requesting an IEP (which could take a couple of months because the approval process is a lengthy one), I requested they add to the existing 504.
Here's a rundown of what is in his 504:
clarification for colors
sit near the teacher, at the front of the room
leave 3 minutes early, arrive up to 3 minutes late without being marked truant (so he can utilize his locker)
allow breaks during class if he's feeling overstimulated, so he can go to a quiet place
complete half of the homework assigned (odds or evens) when practical
There are some people who believe children on the autism shouldn't be included in a class with other children who are learning at a more advanced pace. I would counter with this: Matthew has just as much of a right to an education as any other child in that classroom. The reason why he isn't placed in a special education classroom is frankly nobody's business. He's mainstreamed. He's going to continue to be mainstreamed.
So far, the new adjustments seem to be working. We've avoided meltdowns this week. He hasn't called home complaining of a stomachache. He still hates school, but the anxiety has lessened. Before the diagnosis, he was calling home at least once a week. He was complaining of stomachaches and chest pains.
Anxiety.
But now, things are getting better.
Initially, Matthew didn't want everyone to know he has autism.
Matthew said, "I've had it my whole life. So it doesn't make me any different." And he's not.
That's right. He's still the same child I absolutely adore. I can't even begin to express how blessed I am to be his mom. If I could take away his autism, I wouldn't. Some of my favorite things about him are because of the autism.
He's so innocent and shy. And funny when he's not even trying to be. He's always trying to figure out where he fits in and studying things. ("Why are you laughing? Which part was funny?") He's curious and always trying to figure out why things are the way they are.
A couple of weeks ago, we took him grocery shopping with us. Matthew said, "I need a hug." Right there in the middle of the aisle. I hugged him tight, right there in the middle of the aisle. Then this 13 year old boy held my hand for the rest of the time we were in the store. I'm sure it looks funny to bystanders. But I don't care.
People think I cater to him too much. Now I am past the point of caring. If they can't find something nice to say, then they don't need to be included in our lives. It's really that simple.
I want to tell the world I am proud of my son, who has overcome all of these obstacles in his life. When people look at him like he's weird, I want to scream at them. I want to protect my baby from the mean world. He's scared. He doesn't want to have autism. He doesn't want to be bullied. He doesn't want people to feel sorry for him.
He just wants to be.
I asked him if I could tell people. He said he doesn't care that people know. It's not a dirty little secret. But he is not going to broadcast it to everyone at school because he knows there are mean people who will use this to bully him. If that happens, this mama will bring down a world of hurt on them. Also, you'd never know it, but that kid has a mean right hook.
I asked him if I could tell people. He said he doesn't care that people know. It's not a dirty little secret. But he is not going to broadcast it to everyone at school because he knows there are mean people who will use this to bully him. If that happens, this mama will bring down a world of hurt on them. Also, you'd never know it, but that kid has a mean right hook.
That was a really long post. I'm sorry for all of the rambling.
Thank you all for your kind words, support, and love. It means more than words can express.
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