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.

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.

She's not fine

All the well-meaning, pacifying comments like, "Oh, she's FINE!" and "She's doing great!" and "but she seems so normal to me", only make the let downs a farther fall when the bad reviews pop up. I get sucked in and start second guessing everything and thinking "well maybe she really is fine...", then SMACK! the sting of reality.

A specific example is the first day of jumpstart kindergarten last year when I didn't tell the teacher about the diagnosis or IEP. I was so tired of people saying, "but she seems so normal" so I decided to just see if the teacher even noticed. Then I figured we wouldn't even need an IEP anymore. I was imagining a very normal future. So the second day at pick up the following conversation was pretty disheartening:

Teacher: "I'm sorry. I didn't realize she has an IEP."

Me: "Oh, I didn't want to say anything yet until we see how she does. She can hang pretty well with typical kids...."

Teacher, shaking her head: "Well, I don't know. It's been pretty rough."

Huge deflate there. Reality check. So I did my duty and called a meeting with the whole school team, plus Little Squirrel's preschool teacher who could practically write a manual on her.

We brainstormed some accommodations, and at a later IEP meeting, set some new goals.

Little Squirrel adjusted really well. She loves school. The structure and routine is just what she needs. We would do great if school was every day of the year.

But then Little Squirrel did so well that the same teacher who was concerned then seemed to forget where we came from, and began to act as though Little Squirrel was typical, doesn't need any extra help, and then threw me under the bus on a behavioral evaluation for a new neuro-ped (only took us 2 years to get back with a neuro-ped after losing Kaiser insurance when Little Squirrel got SSI). The evaluation with the new neuro-ped was right around the time the DSM-5 came out. I wasn't really afraid he would drop the diagnosis because the opinion of autism drs between each other is like the Supreme Court--not often do they overturn each other's diagnosis. But still, it was a concern that the teacher could have lost the diagnosis for us.

However, Little Squirrel really pulled out the stops of autism in all new ways even for her! So it turned out I didn't have to worry. And the doctor that was actually concerned about whether she was getting ENOUGH help.

Gah! I just can't win.

Then just this past weekend, someone I thought was a friend, and who also has a special needs child, told me they wouldn't try out our church again because Little Squirrel's behavior upset her daughter so much that now she doesn't want to go back to church again.

Yeah, like she's one to talk. Her daughter can throw some real showstoppers herself.

But it's still a kick in the gut to hear it, from anyone.

The people who so often blow off my concerns, dismiss the truth and imply that I'm just being too picky about her behavior, or try to make me believe all kids act like this and I'm just clueless, are the cause of the depression I feel for days after a public behavior blow up or critical comment. It makes me want to just give up and hide.

Back to School Tomorrow! Yay!

Now that Little Squirrel can read the whole visual schedule thing is so much easier! It's working well so far. I just carry around a tablet and before I pick her up from school I quickly write out the day of the week, then everything that's happening (that I know of) the rest of the day. And since today was Friday I included the rest of today AND the itinerary for tomorrow also, which I think has helped simmer down the weekend anxiety, at least as far as I can tell. To do this requires actually having a plan for each day, which I have learned to do, since I have learned Little Squirrel can tolerate about 2 hours max at home before going nuts and behaving like bugs are crawling under her skin due to the uncertainty of "what's next???"

Evaluation: Good news/Bad news

Good news: she's still autistic! Bad news: she's still autistic! I'm torn over this because if she's NOT autistic, then I am crazy...and imagining everything. And that would be over 5 years of imagining.

I didn't have to worry about having to "prove it" because Little Squirrel gave them a show right out of the box. Normally I would be nervous about her acting like that around strangers but FOR ONCE, I was happy to see her rolling, and rocking, and writhing, and repeating the same thing over and over.

What I said about God leading me toward what Little Squirrel needs holds true: we got a good doctor. And he's not going to send us back through the same ol' brush-brush, swing-swing OT routine. Just what I was hoping to hear: we're going to address the social problems first, by attending social skills classes! I didn't know such a thing existed or that we'd be eligible. He also advised we go back to the psychiatrist for another eval and start talking meds. Years ago I would have said no way. But if meds can help her succeed in school and build positive social skills, I am willing to try. And if meds will help her one day move out and live on her own--I say bring on the pills!