We had J's initial IEP meeting yesterday. With a dozen or so signatures, give or take a few, I officially ended our time with Infants & Toddlers (as of his birthday). Bittersweet, for sure. The last two years have been quite the ride that has taught us so much and brought some wonderful people into our lives.
This was not my first time around the block with a team since all three kids have them. But it was kind of a particularly nerve-wracking one for me, more so than I thought it would be, because it was building the framework for all services going forward into kindergarten.
The more I thought about it later, I realized I was also on edge because this was my chance to make sure J didn't fall through the cracks in the same way his brothers did until we caught on to the fact that our concerns were actually legit and we could ask for things from the school system. This was our chance to really get it right from the very beginning.
It went well. We mostly got everything we wanted. He gets to stay with his county playgroup all next school year, which will focus on the pragmatic speech weaknesses and appropriate play and social skills. He also gets visits at his regular preschool from his Play N Learn teacher, which is fabulous. It wasn't supposed to be her as our preschool is not one of the ones in her territory, but we asked if it was possible. Thankfully, she also thought it was important for consistency, so pushed it through. THRILLED about that.
The only thing we didn't get, which I may revisit in the near future, is OT services. They gave us monitoring. OT monitoring is kind of joke. That was what S got in kindergarten when I kept saying, "Something is wrong. He CAN'T write letters." Monitoring resulted in the OT popping her head in every so often. looking over his shoulder and saying, "Yeah. Hrm. Let's just wait and see." Of course, we lost an entire year and played catchup last year after his diagnosis.
After that, "wait and see"does not fly with me anymore. You know what "wait and see" means? It means they have a busy schedule with other kids whose problems seem more immediate or whose parents are squeakier wheels.
Yeah. NO. In fairness, they did agree to up the monitoring frequency. So that's something.
The team tried to tell me that I can't expect a child of J's age, gender, activity level, and likely future ADHD diagnosis to sit down and try to imitate letters or draw a line or a circle. That I should just take him to playgrounds and Little Gym instead.
Yes. Thanks. I get this. Play is the thing for this age. And we do TONS of this. But I want that OT stuff in place for when it IS age appropriate for him to sit down and learn to write and ends up struggling with it. It's possible he won't.... but some of the testing points to the likelihood that he will. And I am NOT letting him lose an entire year like his brother did just because OT's schedule is too full.
Anyway, so I'll be bringing that back up again in future months.....
I also asked for speech, knowing we probably wouldn't get it. The speech help he needs is all conversational, which is what the regular teacher works on at group and when she visits preschool. It was one of those "let's just ask and see what happens" things. They shot that down pretty quickly.
Those people are really good and well-practiced at shooting you down. :\
All in all though, a successful meeting. Glad to have it out of the way! From here on out, we deal with our home school, which is all the familiar people we have teams with for the other two boys. They know us well. I am so THRILLED about this. :) Should make things much easier and less nerve-wracking going forward.
Thursday, July 31, 2014
Saturday, July 12, 2014
Looking Through The Autism Glasses....
ASD in its high-functioning form, can be very hard to see for those who don't know much about it and only think of autism in the way it is often portrayed in the media. Once someone points out the more subtle signs of it you though and you really start to understand it, you really can't NOT see it.
For my husband and me, it took awhile to mentally move past the idea of "these are just some kind of random weird things our kid does" to understanding it was all part of a much bigger picture.... to see it for what it probably was.
And as that happened, as the early intervention teacher would point things out to me that were starting to add up and I began to see my son differently, it made me so sad. I once referred to it as seeing him through "autism glasses" all the time. The idea that he might be on the spectrum caught us so far off guard way back then.
Though I wasn't totally uneducated on the topic, up until that point I hadn't even considered ASD was what might behind his speech delay and other atypical behavior. (and, actually, hadn't even considered most of what they were saying was atypical was even atypical!) But then, suddenly everything he did made me see it... everywhere... all the time.
It's been 2-1/2 years since then and we've all come a long way. We have learned so much and also realized in that time that we''ve been likely living with and dealing with ASD for much longer than we realized because J has so much in common with his oldest brother. And guess what? Nothing was different. B was still B... J was still J. I realized I don't always have to see them through those glasses.
Some days though, they are forced upon me when I'm not expecting it.
Today, we took the three boys to the aquarium. I quickly realized J was overwhelmed by the darkness and the crowd and the noise. I cringed as I noticed his favorite things were not the fish, but instead the signs, the escalators, the revolving door leading to the rainforest, and the elevator we didn't ride but that he talked about for ten minutes after we passed it. When we weren't riding an escalator, he just kept saying he wanted to leave... "it's too dark.... it's too loud.... i don't want to be here." He was calm about it, but very anxious. I know he was nervous about the darkness because it reminded him of a movie theater and he is scared to death of movies. We don't know why he is afraid of movies....it's just one of those things. If he even hears the HINT of the beginning of a movie on television, he cries and hides.
I made the choice to keep the glasses on when we walked outside.... trying to see how he was interacting differently than others with the world around him. I watched as he held his ears when loud motorcycles flew by. He did it again when my husband played a little xylophone in the park we stopped to play in on the way to the car.
It's hard for me NOT to look at this photo and see autism... which is part of the reason I stopped to take it. On the days when people make me feel a little crazy for getting intervention for him, I can look at this and remember that this is real.
However, THIS is also real.
Much of the time, he's just a pretty typical, fun, silly little boy who is first and foremost, our J ... NOT ASD.
Autism is part of our lives as a family, but it's not everything.
It's part of who our boys are, but does not define them.
There is a lot related to ASD that I wish I could change for my kids -- the social struggles, the anxieties.... I wish I could watch them with peers and not have to hope they act "normal" enough to not get made fun of.... or trust that J won't freak out on another child because they play with a toy the "wrong" way.
But there is also a lot I wouldn't change. Their uniqueness, their passions, their innocence and lack of "street smarts" relative to that or their typical peers, or the amazingly interesting ways they see things, are just a few.
I'm just happy I've learned to take the glasses off once in awhile. :)
For my husband and me, it took awhile to mentally move past the idea of "these are just some kind of random weird things our kid does" to understanding it was all part of a much bigger picture.... to see it for what it probably was.
And as that happened, as the early intervention teacher would point things out to me that were starting to add up and I began to see my son differently, it made me so sad. I once referred to it as seeing him through "autism glasses" all the time. The idea that he might be on the spectrum caught us so far off guard way back then.
Though I wasn't totally uneducated on the topic, up until that point I hadn't even considered ASD was what might behind his speech delay and other atypical behavior. (and, actually, hadn't even considered most of what they were saying was atypical was even atypical!) But then, suddenly everything he did made me see it... everywhere... all the time.
It's been 2-1/2 years since then and we've all come a long way. We have learned so much and also realized in that time that we''ve been likely living with and dealing with ASD for much longer than we realized because J has so much in common with his oldest brother. And guess what? Nothing was different. B was still B... J was still J. I realized I don't always have to see them through those glasses.
Some days though, they are forced upon me when I'm not expecting it.
Today, we took the three boys to the aquarium. I quickly realized J was overwhelmed by the darkness and the crowd and the noise. I cringed as I noticed his favorite things were not the fish, but instead the signs, the escalators, the revolving door leading to the rainforest, and the elevator we didn't ride but that he talked about for ten minutes after we passed it. When we weren't riding an escalator, he just kept saying he wanted to leave... "it's too dark.... it's too loud.... i don't want to be here." He was calm about it, but very anxious. I know he was nervous about the darkness because it reminded him of a movie theater and he is scared to death of movies. We don't know why he is afraid of movies....it's just one of those things. If he even hears the HINT of the beginning of a movie on television, he cries and hides.
I made the choice to keep the glasses on when we walked outside.... trying to see how he was interacting differently than others with the world around him. I watched as he held his ears when loud motorcycles flew by. He did it again when my husband played a little xylophone in the park we stopped to play in on the way to the car.
It's hard for me NOT to look at this photo and see autism... which is part of the reason I stopped to take it. On the days when people make me feel a little crazy for getting intervention for him, I can look at this and remember that this is real.
However, THIS is also real.
Much of the time, he's just a pretty typical, fun, silly little boy who is first and foremost, our J ... NOT ASD.
Autism is part of our lives as a family, but it's not everything.
It's part of who our boys are, but does not define them.
There is a lot related to ASD that I wish I could change for my kids -- the social struggles, the anxieties.... I wish I could watch them with peers and not have to hope they act "normal" enough to not get made fun of.... or trust that J won't freak out on another child because they play with a toy the "wrong" way.
But there is also a lot I wouldn't change. Their uniqueness, their passions, their innocence and lack of "street smarts" relative to that or their typical peers, or the amazingly interesting ways they see things, are just a few.
I'm just happy I've learned to take the glasses off once in awhile. :)
Friday, July 11, 2014
I met a new mom at J's group. Since it's summer, all the older siblings tag along. I have B and S with me and she brings her five-year-old. From the very first time he opened his mouth, he reminded me of B as a younger child. I absolutely love listening to him talk because it's like hearing little B again. :)
He talks at length about space and science and anatomy. He says things like "I'm feeling curious!" and just phrases things in the funniest ways and uses huge words. His mom and I have talked a lot and she said she likes seeing B and hearing how things played out because she always wonders how M will change as he gets older.
Her son has more behavior issues than B did. He is kind of a handful, to be honest and actually, I'm wondering if I'm looking at a picture of what J will be like right before Kindergarten. He is is very, VERY loud, impulsive and just all over the place. If I didn't have a child(ren) kind of like him, I'm sure I would be thinking, "Why can't the mom get him under control?" Instead, I can say, "Yeah. I get it!" and help her keep him occupied while we wait for the little brothers to be finished with group. ;)
She said he has an aide in Pre-K for part of the day and will in kindergarten next year.... and that he does really wonderfully with activities that are part of his interests and then the behavior issues come in when it's something he doesn't want to do. I hope to keep in touch with her after summer because I'm interested to hear how he does in K next year. He's such a neat kid.
Part of what has been wonderful about having J involved in this group and with early intervention in general is just meeting other parents who GET my kids and whose kids have some of the same quirks and challenges. :) Prior to this, I had never really met anyone who had kids anything like mine. I thought I just had really, really hard kids. ASD gave us name for the challenges and connected us with a whole world of people who understand. It's really, REALLY nice. :)
He talks at length about space and science and anatomy. He says things like "I'm feeling curious!" and just phrases things in the funniest ways and uses huge words. His mom and I have talked a lot and she said she likes seeing B and hearing how things played out because she always wonders how M will change as he gets older.
Her son has more behavior issues than B did. He is kind of a handful, to be honest and actually, I'm wondering if I'm looking at a picture of what J will be like right before Kindergarten. He is is very, VERY loud, impulsive and just all over the place. If I didn't have a child(ren) kind of like him, I'm sure I would be thinking, "Why can't the mom get him under control?" Instead, I can say, "Yeah. I get it!" and help her keep him occupied while we wait for the little brothers to be finished with group. ;)
She said he has an aide in Pre-K for part of the day and will in kindergarten next year.... and that he does really wonderfully with activities that are part of his interests and then the behavior issues come in when it's something he doesn't want to do. I hope to keep in touch with her after summer because I'm interested to hear how he does in K next year. He's such a neat kid.
Part of what has been wonderful about having J involved in this group and with early intervention in general is just meeting other parents who GET my kids and whose kids have some of the same quirks and challenges. :) Prior to this, I had never really met anyone who had kids anything like mine. I thought I just had really, really hard kids. ASD gave us name for the challenges and connected us with a whole world of people who understand. It's really, REALLY nice. :)
Friday, July 4, 2014
Quirk 996 of 1,001.....
One of J's "things" is that I can't yell at him. Anything stated in a loud, authoritative tone and with exclamatory language like "Don't DO THAT!!!" or "Stop it RIGHT NOW!", or even a facial expression that shows anger causes him to melt down and things to spiral out of control. That's when he resorts to hitting and other physical behavior. Whereas, if I deal with the behavior calmly, it resolves very quickly and with very little battle of wills or escalating behavior.
This is not to say I don't discipline him. I have just had to learn new ways to do it. My face and tone have to be calm. Neither conveys approval of the bad behavior, they just have to be even and calm. It has been an exercise in patience for me! I try to remain expressionless but speak at a regular volume. Try doing that when your three-year-old is trying your patience for the millionth time in a day! Not easy...but it really makes a difference with him.
Anyway, so this is something I caught onto a long time ago with J and started implementing.
Yesterday, I was talking to a friend who works with ASD kids as part of her job as team chair at a county school and she was telling me about a 4th grader who has this very same issue! They've actually had to train the teachers how to manage his behavior with calm facial expressions and tone because loud, authoritative discipline is one of his triggers. Who knew this was even a thing? I just thought it was a weird thing unique to J!
Definitely something I will be cluing teachers into over the next couple of years... I think giving them this knowledge may nip a lot of potential behavior issues in the bud. Hm.....
This is not to say I don't discipline him. I have just had to learn new ways to do it. My face and tone have to be calm. Neither conveys approval of the bad behavior, they just have to be even and calm. It has been an exercise in patience for me! I try to remain expressionless but speak at a regular volume. Try doing that when your three-year-old is trying your patience for the millionth time in a day! Not easy...but it really makes a difference with him.
Anyway, so this is something I caught onto a long time ago with J and started implementing.
Yesterday, I was talking to a friend who works with ASD kids as part of her job as team chair at a county school and she was telling me about a 4th grader who has this very same issue! They've actually had to train the teachers how to manage his behavior with calm facial expressions and tone because loud, authoritative discipline is one of his triggers. Who knew this was even a thing? I just thought it was a weird thing unique to J!
Definitely something I will be cluing teachers into over the next couple of years... I think giving them this knowledge may nip a lot of potential behavior issues in the bud. Hm.....
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