Autism Spectrum and Other Delays

[snoopy]

Many, many hugs to you.
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[Aryn]

[dance]

Oh, Aryn, wow. What a lot to deal with all at once. Are they just saying things like, "generalized delays?" Sometimes families I work with seem to get very vague explanations at first. I know that can be frustrating, when you want to know just what's going on.

Your little guys sounds awesome, still! All the things that make him who he is are more than just symptoms. He's not a checklist, even if some of his traits match up with one. He is your kid, and you love behaviors and characteristics of your son, not of a diagnosis.

All moods and behaviors are on a spectrum, not just autistic ones. We just don't classify everyone for everything. K is a complicated small human, and all the paperwork in the world won't actually pin him down. It is helpful to understand patterns and tendencies, and to understand things that have made a difference to other kids and families. I just want to be sure you know that you were right to think all those things were great about him, and they still are.

I hope you still have contact with the OT you felt comfortable with? Or at least that you feel a good connection to one of the new therapists?
Kitchn makes a great point about socialization, and I think it's true for grown ups, as well :) Although, it sounds like you have a good social network that involves other families with young kids. That's fantastic. Stay connected and talking, here or IRL. I really respect you for recognizing that talking to someone professional could help you. I don't think I am usually on top of myself that way. You are a great mama, you are doing everything right for this boy. XOXOX.
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[cake]

I'm so, so glad we have such a great pool of experience to draw from here on G*. <3

Aryn, my heart goes out to you. I'm so glad that it seems like you're going to get services that will help K, but I also want to reiterate what everyone said- that he's more than a diagnosis, and all those things you love about him are still totally valid. Argh, I'm a couple beers in and these are totally stupid platitudes, but I think you know what I mean. You are a kickass mom. That is all.
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What can't that centaur woman do?

[Aryn]

As an update: We've got a meeting with the EI for approval of services on the 10th, then all his therapy should start the week of the 17th.

We ended up going with ABA in our home, because the schools that he would be eligible for are far enough away that he would need to be bused there - and I don't feel comfortable with that yet. He has pretty terrible motion sickness, and I think he would be completely miserable if he had to ride a bus everyday.

Hopefully after he turns 3 we can get him into some type of (local) school setting.

We also got our copy of the evaluations and boy, that was hard to read. They explained to me that they are harsh on the evals so the kids can get the maximum services, but to see it all on paper - "K can't do this or this or this or this" - it's just... hard.

Lastly, it says his autism score right now is 29.5 (30 is the cutoff to be considered autistic) - but I think that number will go down once his therapy starts. He's already doing a lot better in the last few weeks with me working with him on some things.
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[MtyAphrdti]

PM'd you!

[scaredsi11y]

I hope this is okay to share here...

I've been working as a substitute teacher lately. Today, one of my students was an eighth grader with autism who has been mainstreamed for part of the school day. The teacher I was subbing for left notes for me explaining that this student is in her class mainly for socialization and not to worry if he couldn't keep up with all the work other kids were doing. He likes to work independently, and he has a binder with special worksheets for times that the classroom work is not a good fit.

Right from the start, I was so touched by how sweet the other kids were. They prompted him to say "here" during attendance, even asking me to "give him another chance! read his name again, he can do it!" I knew he was there, and even if I didn't, another student could have just said "he's here," but they were really focused on getting him to succeed at the task by himself.

The student who takes the attendance sheet down to the office asked me if he could walk along with her, and he was very excited that she wanted him to carry the attendance sheet. (I was given instructions not to let him leave the classroom on his own, but he can do errands or use the bathroom if someone goes with him.)

The rest of class went well too. I was really impressed with how encouraging and helpful the other kids were. This was probably the best example of mainstreaming I've ever personally witnessed. Even though the autistic student couldn't complete all of the grade-level work, he was definitely getting a lot of encouragement from his peers and practicing some important school skills. It was so great!
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"It came to betoken the nation's biking and adulation of automobiles!"

[Aryn]

Oh wow, I can't believe I haven't updated! Thanks for bumping and sharing your story scaredsi11y!

K is doing SO GREAT! He loves his teachers and they love him. He's got 5 - Speech, PT, OT, and two ABA teachers. We just had our three month reviews.

He still has a pretty significant speech delay (they say he's about where a 20 month old should be - and he's 32 months - more than a 30% delay) but he's making wonderful progress. He can say Mama and Dada now, and count to ten. He started asking for "ookies" and "ackers" this week. His vocabulary has at least tripled. He's been signing a bit too, (only about 5-10 signs) but it's enough to help him to communicate what he wants. And his receptive vocabulary (words he understands but doesn't say) is huge. Hundreds of words.

PT and OT are great for him, but both those therapists agree that while it's helping him, he's not really delayed much (I think maybe 5-15% in different areas). He'll probably lose those services at the 6-month review unless the EI people are feeling generous.

I think the general consensus among the teachers is that he will be able to go into a normal school next fall, but he'll still need extra speech therapy. They may continue ABA if his PDD diagnosis holds, but I'm not sure it will. A lot of the markers (eye contact, etc) have completely gone away - I'm pretty sure it was just shyness!! He's so much more social, and not very shy anymore. Way more comfortable with adults.

He still needs to work on his social skills... which is hard when we're having individual therapy. But I think once he gets into a school he'll figure it all out pretty quickly. He's so smart.
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Are you familiar with the old robot phrase "DOES NOT COMPUTE"?

[milyssa]

Aryn, this is so great to read! :) I'm so thrilled that all of the system help has been working out for you guys!
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With all its sham, drudgery, and broken dreams, it is still a beautiful world.

[knittykat]

I'm glad that things are improving for your family, Aryn!

I just wanted to echo what was said above; I used to be a special education aide and I was SO IMPRESSED by how all the kids were so kind, helpful, and non judgmental towards all the special education kids. When he is ready for school I think you will have a wonderful experience regarding the other childrens' reactions. He'll find his place and fit right in.
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"Fun is where you find it" - jackierocket

[irish*eyes]

Because I've been away from glitter for so long, I just now saw this thread.

I'm really happy to hear the outcome of his therapy is going so well. And I think you're so strong to go through all of this; I'm sure the uncertainty is so hard to process sometimes. I'll be keeping all of you in my thoughts. xo
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~Amanda J.