KayTar had her long awaited evaluation yesterday and it went so well! Amazingly well, actually. She did things I didn't know she could do! They asked her to point to the goldfish in one of her books, and she DID IT! Then they use her animal flashcards and help up two at a time and would ask "Which on is the dog (or other animal)?" and she picked the right one four times!! I had no idea she had been actually paying attention or getting anything out of me playing flashcards with her, but she got dog, fish, cow, and duck correct! If I'm being honest, I stopped doing flashcards with her a while ago because she seemed like she wasn't paying attention or getting anything out of it, but know I know she was. She just does things differently and isn't as "engaging" as most "normal" children. I can't tell you how happy that makes me! She was able to do a shapes puzzle, and stack 3 blocks. She was able to put the nesting toys back together. She was social and happy the entire evaluation, really. She had fun "playing" with the evaluators.
I showed the occupational therapist the video of the shaving cream and described the "odd" reactions and behaviors she has been exhibiting and she didn't seem surprised. At one point she put on a latex glove to try and play with KayTar's mouth to see how she would react and as soon as she touched her cheek, KayTar gagged. The OT asked me if she normally gags when her face is touched and I said no, because she doesn't. So the OT took the glove off and set it on the ground and asked KayTar to pick it up. As soon as KayTar touched it, she gagged and dropped it. So there's one more weird thing to add to the list. *lol* The OT said she has SI (sensory integration disorder) with tactile defensiveness. It is INSANE how fitting this diagnosis is for KayTar. I picked up a book on it yesterday (because I'm one of those people) and they even have a picture in the book of how KayTar sits, because it is such a classic manifestation of SI. The OT said all of her delays can be traced back to SI, although at this point we are 100% sure that it does, because we haven't had the MRI or neuro appointment, but this might be all there is going on (besides the migralepsy). She said her lack of social interaction and those "autistic" qualities are caused by a fear of unexpected or unwanted touch. She is open with BubTar, Josh and I because she predicts our behaviors and trusts us to touch her in a way she is comfortable with. She can't trust other people and it fearful of unwanted physical contact. Even the fact that she covers herself in her blanket is symptomatic is SI, she is using it as protection from physical contact. It gives her senses a time out, because she like the way the blanket feels and it keeps other things from touching her.
SI explains why she needs time alone in her crib throughout the day, because otherwise she gets overloaded. She actually had to go to her crib with her blanket after all the playing, because she was overloaded. The OT said its great that we have already noticed that she needs that and it is very important to give her that "retreat" time and make sure she has her blanket when we are out so she can "protect" herself if needed. Her speech could be delayed because of her oral texture issues and the fact her muscles are underdeveloped because the lack of different foods. Her walking could be delayed because children with SI often "feel" gravity differently and have a hard time overcoming that.
This diagnosis is amazing. Although it is something she will deal with for life, by the time she is a teenager or adult, she will have learned how to protect herself and compensate for these things and will be fine. We have therapy ahead of us, but it will teach us all how to help Katie compensate and get what she needs out of the world.
The OT said that for KayTar unwanted or unanticipated touch makes her feel the same way you or I feel when a police car pulls up behind us with the sirens and lights on. Sheer panic. That is how she feels when she touches the shaving cream or when someone she doesn't trust tries to touch her or she gets some other negative tactile input. Her nervous system isn't like yours or mine, it is a whole new ball game with KayTar...but at least we know what ball game we're playing now. We are supposed to let her play with plain yogurt every day because it is the "stage below shaving cream", and we have to fill a giant Tupperware bin with uncooked rice and beans and have her sit in it daily and try to get her to the point where she will get in with only her diaper on. This is going to be quite the learning experience for all of us, but I am so excited that we can start helping her now.
KayTar is actually functioning at a 16-18 month level, except for her spoken language skills which is at 13 months, and her gross motor which the PT will evaluate next week. Her fine motor is right on at 18 months. I am so happy about all of this. I know I keep saying how amazing it is, but it IS! Today we did flashcards again and she learned about 5 animals. I'm so excited to be learning HOW she processes and learns so I can help facilitate that. Wow! I am ecstatic! We're on our way!!