I don't know how to start this post, but this is a subject I've been feeling I need to share on the blog. So I'll just blurt it out:
Nyah is on the autism spectrum.
I am immensely relieved.
I've long known "something" is going on with Nyah. She has behavior problems. She has learning disabilities. Something something something.
Over the years I've reached out to various experts - other parents, pediatricians, family doctors, the local public school. I've read so many parenting books it's impossible to remember them all. I've read books about the brain, learning styles, learning disabilities, sensory disorders, processing disorders, ADD/ADHD, and so on. I've researched numerous theories, projects, programs, companies. I've tried so many different educational and learning programs it's ridiculous. It makes my head spin to think about everything I've tried.
I had even looked at Autism/Aspergers, but she didn't fit with the typical boy-dominated symptoms.
So I continued on. Trying to figure things out. Trying to figure out how I could help Nyah.
And then came the Christmas Party from Hell - Dec. 2013. It was horrible.
In hindsight, I should have known it would be horrible. If I'd thought about it at all, I would have known it could be horrible.
Large crowd = overwhelmed and stressed girl
Strangers talking to her, expecting her to interact with them = overwhelmed and stressed girl
Fun games with prizes = winning & losing, not getting the prize she wanted, prizes breaking, losing a prize piece = emotional roller coaster = overwhelmed and stressed girl
The result? Major meltdown, completely out of control. Kurt took her to the car, I rounded up the rest of our kids, and we left.
Kurt says it wasn't that bad. I think she was worse than her normal. The reason I should have known it could be horrible is because we know she has a hard time in similar situations - other work parties, homeschool group activities or field trips, new activities with new people, and so on. She does much better if she has a way to escape the situation stressing her out - a way to withdraw from the group and center herself - such as running off to the playground to let off steam or hiding out in a bathroom stall for a a few deep breaths. At the Christmas Party, I didn't recognize what was happening until it was too late. I was distracted when I was with her, and then she and Austin were off together playing games while Kurt and I were with the younger girls.
Kurt says it wasn't that bad. I think she was worse than her normal. The reason I should have known it could be horrible is because we know she has a hard time in similar situations - other work parties, homeschool group activities or field trips, new activities with new people, and so on. She does much better if she has a way to escape the situation stressing her out - a way to withdraw from the group and center herself - such as running off to the playground to let off steam or hiding out in a bathroom stall for a a few deep breaths. At the Christmas Party, I didn't recognize what was happening until it was too late. I was distracted when I was with her, and then she and Austin were off together playing games while Kurt and I were with the younger girls.
A week or two before the Christmas party, I'd met up with an old high school friend for dinner and shopping. Her son has Asperger's and we spent a little time talking about how he was doing. When Nyah's meltdown happened, this visit sprang to my mind.
I didn't think of my friend's son because he and Nyah are the same or similar, because I really don't know much about my friend's son's individual situation.
I didn't think of my friend's son because he and Nyah are the same or similar, because I really don't know much about my friend's son's individual situation.
That night I googled "aspergers and girls" and found a completely different perspective.
Aspergers in Girls - scroll down to May Not Be Diagnosed, the video is interesting but not necessary to understanding the point I want to make.
Oh the relief! Do you remember all those experts I reached out to? Their variety of answers all boiled down to the same thing: It was my fault and Nyah's fault. According to them, Nyah needed anger management classes, she needed to learn how to be in control of herself, she needed to try harder. As for me, I need to be more consistent, more firm, have clear expectations, rules, and consequences. I needed to make her do school work, make her behave.
And we tried. Oh, we both tried. I may as well have waved a wand around.
But to know it's not something she has control over?
Asperger's - It was the first time when everything about Nyah fit under one diagnoses. I was overwhelmed. I cried. I wanted to climb on the roof and shout to the heavens, HALLELUJAH!
The following day I emailed our online charter school. They put me in touch with our umbrella school (located in Cedar City, UT) and they sent me a bunch of autism spectrum tests, which I filled out and returned.
The result is that we know Nyah is on the autism spectrum.
We've done some additional testing with the umbrella school (a special ed teacher came up here for a few days and we met at the library) and I'm waiting for the results and a suggested IEP.
I'm not going to share Nyah's experiences very much on the blog. There are some things I will share, such as the wonderful resources for school that we've found for her, but otherwise I'm going to respect her privacy in this area. If you have questions, send me an email or message through facebook.
I want to point out that while the diagnoses is new, the symptoms/behaviors are not. We've been working on a trial & error basis for all of Nyah's life - working to understand her better, learning her triggers and best coping techniques, and figuring out how she learns and what works best for her to get an education. What the diagnoses gives me is a new framework for all these things and a new understanding of Nyah. I am so incredibly grateful for this information! I'm so incredibly grateful to be Nyah's mom. She is a wonderful, caring, spectacular girl and this isn't going to change any of that.
I want to point out that while the diagnoses is new, the symptoms/behaviors are not. We've been working on a trial & error basis for all of Nyah's life - working to understand her better, learning her triggers and best coping techniques, and figuring out how she learns and what works best for her to get an education. What the diagnoses gives me is a new framework for all these things and a new understanding of Nyah. I am so incredibly grateful for this information! I'm so incredibly grateful to be Nyah's mom. She is a wonderful, caring, spectacular girl and this isn't going to change any of that.
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