Nea is missing school. She asks about the bus and going to school every day. And as her language increases, I'm also noticing that her echoing is getting stronger as well. I'm not sure if that's a learning process with new language or she's just blowing off some stress steam. She repeats phrases often, which I won't lie...can be maddening.
Nea's brain is wired in a way where she likes to keep things the same. Repetitive behaviors is one of the hallmarks of Autism. There are certain things that she likes said in a specific order....
Hearing a train....
Nea: Oh! What's that?
Me: (she knows exactly what it is, but its the script she wants)
Nea: (frustrated because I am saying nothing) Mama! What's that?
Me: (sighing) What IS that?
Nea: It's a train!
If I veer from that script she gets very upset and gets very frustrated. She recites that script every time she hears a train whistle. If I say, "Nea, you know what that is....what is it?" She simply responds with the line, "Mama, what's that?" She learned that script when she was very young, and I was trying to get her to focus on something she couldn't see. Dog barking, train whistles, etc. But now its a script that brings her comfort and she uses it often.
There used to be a school of thought that it was important to "pull Autistic kids out of their world" and not let them engage in repetitive behaviors, or self-stimming activities such as spinning and hand flapping. But what we are learning from adults who are on the spectrum is that it brings them much relaxation and decreases anxiety. So now there is a bit of a shift to allow these behaviors in moderation so that kids can maintain a balance that works for them.
I love this description by Dr. Mark Bowers, a Pediatric psychologist.
"I do want to take a moment to acknowledge, however, how it must feel for a parent to see the Autistic ‘veil’ drop in front of the child’s eyes as they check out from the real world for a moment and become absorbed in a repetitive behavior. Especially for parents who have been working with their child for a number of months or years and have begun to see progress; the child’s return into scripting and other stereotypical behaviors is a glaring reminder that the child has Autism. It also serves as a reminder to the world that something is not quite connecting in the child’s brain. I often conceptualize this as a neurological tug-of-war that is taking place inside the child’s brain. The hardwiring of the Autistic brain is determined to keep the world simple and the same, with little (if any) interest in relationships or social connections. However, as the child makes progress and begins to learn how much fun can be had with others and the value of having play partners, another part of the brain begins to compete for dominance."
We decided long ago that home is a "free zone." You should be able to do what you want to do at home right? If I want to walk around without a bra at home, because I feel more comfortable then I should be able to do that. If Nea wants to watch the first 7 minutes of a movie over and over and over and over....she should be able to do that. There are so many rules in our world that we are expected to follow that it seems just mean to make her follow them at home. Don't get me wrong, it's not Lord of the Flies around here. She still has to say please and thank you, she still has to do her chores, she still has to use words when requesting items. But she also gets to let her hair down too.
Yes she has chores. Just 2. The first is to open the back door and let the dog in when he's done doing his business outside. The second is to put a scoop of dog food in his bowl every night. Not horrible chores, but 2 things she is very capable of doing. Those 2 simple things teach her a few things: listening for the dog when he barks (auditory processing) (opening the door but NOT leaving), caring for the dog (empathy) and accomplishment (self-esteem boost).
Okay, back to today.
Here's how things go when we go to therapy:
1) We wait 5 min in the waiting room
2) Bear comes to get Nea for OT (Bear is the nickname she gave the OT gal)
3) Nea goes to Bear's room for therapy for 45 minutes
4) Bear and Nea walk hand in hand to Diana's room for speech therapy
5) Nea is in speech therapy for 45 minutes. (Mom is secretly watching in the observation room)
6) Nea calls for Mom and Mom comes in to talk to Diana for a few minutes
7) Nea waves bye to Diana and goes to the waiting room.
8) Nea pushes the button to open the door and runs to Jamba Juice (just around the corner)
Today it went like this:
1) Waiting room wait was 15 minutes
2) Bear comes to get Nea for OT...she has a student with her
3) Nea goes to Bears room for 45 min of OT therapy
4) Bear walks Nea back out to the waiting room because Diana is not ready yet and with another kid
5) Nea is in waiting room again for 15 minutes
6) Diana comes to get Nea from the waiting room...she has a student with her
7) Nea goes to Diana's room for speech therapy (Mom is secretly watching)
8) New activity to include playing a game with a peer. Diana with Nea and Bear with the other child. Diana and Nea walk to Bear's OT room
9) Nea tries to play the game.....total meltdown
Now, before anyone gets all out of sorts, I am NOT upset with anyone about this scenario. Diana asked me beforehand about playing with the peer and I thought it was a good idea. Also, I totally understand how things come up and patient flow gets interrupted. It happens to me too when I'm at work, and sometimes its just inevitable no matter how hard you try. It's not anyone's fault.
This meltdown was pretty tough. I haven't seen one like that in a long while. Diana came to get me and I scooped Nea up for tight squeezes and handed her her paci's. Her teddy bear (the cherished friend these days) was in my purse so that was given to her as well. It took about 10 minutes to get her calmed down. Diana felt she tried really hard and seemed to really want to participate, but just couldn't keep it together.
We went swimming after therapy. 90 minutes in the pool did her a world of good. We know she loves the water and the natural compression of the water is good for sensory integration. She did tons of underwater swimming and was exhausted when we were done. Wrapped in a towel after swim is another one of her rituals that she needed today.
We learned a few lessons with this one:
1) We are trying again next week, but the peer will come to Nea's speech room and Nea will not go back to Bear's room. That was probably the biggest stressor for her. When she leaves that room, she believes she is done.
2) Use visual cues for her before the peer activity. She used visual pictures in school and they worked well for her. When it was time to sit on the carpet, the teacher would hold up the picture and tell the kids it was carpet time....and they all scampered to find their seat!
Leaving routine is a stretch goal for Nea. She's going to be uncomfortable for awhile as she tries to gain this skill set.
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