Just a little nuts

Just a little nuts
A blog about single parenting & autism

Thursday, October 16, 2014

Early intervention always helps; never hurts

Study: Autism Therapy Produces Greatest Gains When Started Before Age 2 

We had a bit of a delayed start in therapy at age 3 1/2 (because I fell for the "wait and see", "she'll catch up", "she'll grow out of it", etc. approach, by listening to friends and family) but the progress was still dramatic and now LS is 92.7% mainstreamed. It astounds me when I see so many diagnoses coming at ages 6, or 8, or 10.....? I don't understand how the parents didn't know until then or wonder or question. To be fair, it's not always the parents. It can often be doctors. PC drs have been so slow to get up to speed on spectrum news. Many are still only aware of classic autism, and unaware of the spectrum, and PDD-NOS--and that the DSM now categorizes them all equally under the autism spectrum disorder umbrella. This lack of current information can delay a diagnosis for so many who could have experienced greater therapy results had they been diagnosed earlier. 

Overall, I don't get the hesitation, other than cost. It's not like prescribing medication with serious side effects. Since when does therapy have serious side effects? It never hurts. At worst, there is no progress. At best, there is. 

What really amazes me is the general lack of curiosity I get from doctors, specialists, and educators. The spectrum is so vast and there is so much to be discovered still. Whenever I ask about one of LS's particular behaviors or gifts, in an effort to get to the WHY of it, I only get pacifying comments about how great she's doing. I KNOW she is. But I am CURIOUS and I am not a scientist or specialist. But I have had to be in order to find answers to my questions.

Tuesday, October 14, 2014

Butt Cheeks!

Except for music, I rarely, or never, watch or listen to anything around Little Squirrel. All the Facebook video clips, online news segments, funny video of whatever, etc. I either wait until night when she's in bed, or listen with headphones. This morning a short clip of a Conan interview popped up in my feed. It was short. LS was busy watching her morning lineup and eating Cheerios. The headphones were across the room. I got lazy.

The Conan interview was with Dax Shepard from Parenthood. I like him. It looked harmless. But the feed gave no indication of the topic. And all too late I simultaneously found out that part of the interview was about Dax having his butt hair shaved for a role just as LS happened to approach just in time to overhear Dax say "butt cheeks."

BUTT CHEEKS???? BUTT CHEEKS!?!? BBBUUUTTTTTT CCCHHHEEEEEEEEKKKSSS!!!!

Knowing I could be stuck with this on continuous play for months, or years, I decided denial was the best strategy.

"No, that's not what he said. You didn't hear it right." I claimed, holding my breath.

"Oh." She seemed to accept that. For the moment. But only time will tell. "Butt cheeks!" could show up AT ANY TIME. It's not a matter of IF, but WHEN.


Wednesday, October 8, 2014

IEP: Now that I think about it...

it's the first time I'm disappointed with the school's handling of the IEP. Dropping the speech therapy and leaving nothing much left on her IEP to work on seems lazy to me. The speech teacher is great, but she is teaching to the test. Sure, Little Squirrel can perform brilliantly when it's scripted and expected and prompted and rewarded. I don't see the same progress they do. But I'm not sure the public school system has the capability to drill down on all the gray areas, and insurance doesn't pay for enough therapy sessions to make any long term difference either.

Tuesday, October 7, 2014

IEP results

The IEP meetings get smaller in attendance and the IEP itself is a third of its original size from when it began 4 years ago. They are keeping her in the social group but now her speech therapy is being reduced to once a month and "check ins." I didn't argue because she is a different person at school and as long as she is performing to standards there I can't really prove what goes on outside of school. She really does live two lives. School gives her the structure and routine she needs. She is successful there but I'm also concerned that they are overestimating her since her fierce survival skills seem to enable her to cope and blend in. Yet that can leave kids like Little Squirrel vulnerable, when given less supervision and support that they actually do need to navigate complicated social situations.

However, the progress has been huge and this is the first year I haven't had a single call or email from the teacher already by this point.

Monday, October 6, 2014

IEP eve

It's IEP eve once again. I guess this will be #5. I don't feel any more prepared or experienced than I did at the first one. Back then I think I even remember saying, "I'm just along for the ride." And I wondered why there was a weird silence in the room, and looks. And I thought, am I not supposed to be just along for the ride? Should I be doing more?

Then along the way I learned from others that IEP meetings are generally pretty adversarial. Thankfully, even though we are in a lower income school district, I have never had to argue or fight to get whatever I think Little Squirrel needs. And more thankfully, the early intervention served her well so she doesn't need much, not as far as school goes anyway. Also, I am aware that the school doesn't have a magic wand, or magic wallet, to fix things that could be better for us, or remove bullies (because there will always be more), etc. They have always been great at tracking the progress toward the goals, setting new goals, and overall, for caring about Little Squirrel.

Last year at the IEP meeting there was a moment I won't forget: the whole table of educators looking at me while one spoke on the verge of tears about, "the wonderful things you've done for your daughter." Really that just means sticking with it and putting her first and being involved. But I guess that's not the norm they experience from parents. I can't imagine anyone doing any less.

But it was nice to hear.

Sunday, October 5, 2014

It manifests in Minecraft

Last year Little Squirrel had cognitive testing. She scored well above average overall, after averaging out her extreme high scores and low scores within same categories, which is where the "atypical" features of autism come into play. Her highest score was in the spatial category on the "copying" task where she was tasked with replicating block patterns after just a few seconds to view the model. She scored 99.5%. I asked her psychiatrist what this could mean about how her brain works, since I'm always hoping for a glimpse. But just like every other useless specialist we've encountered over the years, he said mostly nothing, except to say, "Well, she has a gift." Yes, duh. No one should score that high on an evaluation. A test, yes. Evaluation, no. So ever then since I've been wondering how this "gift" might ever manifest outside of the evaluation.

Then the Minecraft obsession began. Cue block-model-copying gift. It's the perfect utilization.

She is obsessed with Mr. Stampy Cat videos on YouTube, then I noticed she is now building exact replicas of parts of his worlds. Example: She sees his bank with a pig in it; she builds one just like it. She sees his "doggy hockey rink"; she builds one just like it. But what would take me an hour, she does in 5-10 minutes. And they are exact replicas, without referring back to Mr. Stampy Cat's models.


Wednesday, October 1, 2014

Common Core, you are not our friend

What does this even mean?

Little Squirrel brought home some low scores on math assignments and tests. She tested into the superior range last year for math calculations but the format of the Common Core curriculum works against her logical, literal thinking. She couldn't make sense of the format and wrote "I don't get it" beside a lot of the problems. I didn't get it either when I helped her go through and fix the errors. I can add and subtract and solve for x, but I just can't figure out what they are asking most of the time on these pages.

I am even more opposed to Common Core now that I see how it demands that all children must learn and think the same way. It doesn't allow for any differences and appears to view different as less, or incorrect.