PT/OT eval.

So her eval was on Friday and I was hoping to have an update that night but obviously that didn't happen. Life has a way of getting in the way of blogging.

Her appointment was at 8am, meaning we had to leave the house by 6:30...I'm sure any parent with a toddler knows how horrifying this is...if they are lucky enough to have a child who sleeps later than that. For whatever reason, she woke up at 5:30 and was ready to go. One blessing down...I didn't have to wake a sleeping baby!

Her PT evaluation went well but it was definitely NOT what I had expected it to be. I was envisioning running and playing on like gym equipment. I have no idea. I have never done anything like this before in my life. That was SO not what they did. She was taken to a room where they took her shoes and socks off and evaluated her legs and feet. Since she is a toe walker (very typical for Autistic kids) they were concerned about her calves and feet. All my kids are toe walkers so I never thought it was a huge deal. Apparently it is. And she is what they call a "W" sitter. This is when a child sits with both knees out and legs out...i think it looks more like an "M" but whatever. I was a "W" sitter and I turned out okay (though I'm sure the argument could be there that since I have had 2 knee surgeries that maybe that had something to do with it...though I can't remember the last time I sat in a W or an M). This is apparently another huge problem as it could hurt her hips and her growth of her femur.

Developmentally wise, she passed all her gross motor skills right on par (gross motor is like running and jumping and the more physical stuff). She aged appropriately, which was no surprise.

The surprise was when they brought in an Orthopedic specialist to evaluate her legs and her feet. He was in the room for about 5 minutes before he turned to the PT person and asked what her diagnosis was...

"preliminary diagnosis of autistic" she responded for me.

He nods. "yes, I was going to say that she appears to be autistic to me"

And I felt like I literally had just been punched in the throat. I guess I have this silly idea that since I don't think she's "that bad" that maybe most people...even medical professionals...wouldn't see how autistic she is. So wrong. That doctor who knew NOTHING of her picked it out like it was staring blatantly at him.

So they discussed her feet. Told me to keep shoes on her at all awake hours of the day to try to eliminate the toe walking. Come back in 6 months and if she isn't any better...they will put braces on her feet to eliminate needing surgery in a few years.

Another blow to the gut. Braces? Wh...wow.

And with that we are whisked away to the OT part of the appointment. OT is fine motor skills...like putting pegs in a peg board or staking blocks or opening a box. I don't think she has any issues here either but again, mom bias.

She aged at 18-22 months but has MANY sensory issues that she will require twice weekly therapy to help sort out and possibly eliminate them.

My head is spinning. The very nice OT lady, Stephanie, tries to explain to me what sensory issues are but I found myself staring at her and nodding more than really retaining any information by this point. I think I was still replaying the ortho guy's words "She appears autistic to me"

What I did gather from her very detailed explanation is that Maddy toe walks because she is hyper sensitive on the bottom of her feet...as well as her hands. She also appears to have some hearing sensory issues. And she rocks (or self stimulates) when she is either not stimulated enough or too stimulated with what is going on around her...a sensory issue. Because her body's senses don't work like a typical person's senses. So while we can take in a busy room of kids playing, her body goes into overload and begins to rock as a way of processing. Or if she is in a room by herself and it is boring...her body is compensating by rocking instead of finding other ways to engage.

Makes sense. Sure. Okay. She gave us a brushing technique to use on her arms and legs to get her body used to touch and desensitize as well as calm her.

Now we wait for our insurance to approve her OT therapy twice a week. We are waiting for our insurance to approve her speech therapy twice a week. We are in a hurry up and wait place.

There is nothing more frustrating than to hear "NOW IS THE TIME" but wait....we need approval first.

Overall, we have been seeing dramatic improvements and also some decline as well. She is getting better at her eye contact and physical contact. She is playing with her sisters more. She is answering to her name. She is signing and saying more words.

She is also having HUGE behavioral issues. She is hitting and fighting with Maelle. She is fighting sleep. She is having MORE tantrums than she ever has in her life. I'm guessing this is a result of our INTRUSION into her world and pulling her out. I am imagining that this will get worse the deeper we go and the more we demand of her. But in turn, will get better in time. I hope.

One final word before I go...nap time is over...if you are going to read anything on autism, read this book first. It's called "Let Me Hear Your Voice" by Catherine Maurice. She is a mother of 3, two of her kids were autistic but have since been recovered. I feel like every emotion she wrote in that book was a mirror of mine. Please read it. And you can read and feel where we are. You can buy it on amazon for like $10 or I'm sure if you live near a major bookstore (don't laugh too hard...we don't!), I'm sure they have it.