Why does Raya need OT?
Sensory disorders affect EVERY function of the body. In short, OT helps to organize Raya's sensory processes and helps her to be calm. When she doesn't have OT she's very high-strung, is unable to relax and be calm, is very easily distracted, is easily frustrated, and just overall doesn't function as well as she does when she gets OT. This has been made crystal clear over the past 3 weeks.
About 3 weeks ago, the nagging cold and runny/stuffy nose that Raya had been fighting for about 6 weeks off & on turned into a sinus infection. It was a major disturbance to her whole system. She had a fever of 103.2 and vomited a couple times, and for a child with a history of chronic vomiting for the first 18 months of her life, it reminded her of the fear she used to have associated with food. Not to mention that when you have a sinus infection, nothing tastes good anyway. She went from eating 200-300 calories per day to eating ZERO. She suddenly wanted nothing to do with food again. She would ask for things that she knew she was used to eating and then not even taste them.
Her sleep pattern was disturbed as well. She was waking up 2 hours after bedtime and then not going back to sleep until well after midnight, and waking up earlier in the morning than usual. Then to add insult to injury, her darling OT that she had been working with for a year moved away. She went from getting OT twice a week (once in clinic & once at the pool) to NADA for 2.5 weeks. I will admit that I stink at being consistent with home therapy programs. I did do her sensory protocol with her as often as I thought about it, but most of the time she was really resistant and I didn't have it in me to fight her on it. The small amount of work I was doing with her was nowhere near what she needed.
So basically, she got sick and that threw her whole system into a state of chaos and she no longer had OT to help organize her sensory processing so things just kind of spun out of control. It was rather disturbing to watch. She had made SO much progress since starting OT a year ago and it's sad to watch her struggle with things that she had been doing so well with. And a little scary. She exhibits a lot of sensory seeking behaviors where she's doing things just to get the feelings that they give her. One of the ways SPD affects Raya is that it takes a stronger sensory input for her body to recognize the input. In order to compensate for that lack of sensation, she does things like falling down on purpose, swinging from the kitchen table, jumping, squeezing her blankets, packing her mouth full of food (or non-food), running everywhere she goes, running into things, etc. and she seems to have no sense of danger and very high tolerance to pain. Some of the things she's been doing lately are scary, like when she moves the chairs out of the way so she can swing from the edge of the kitchen table, climbs up on the kitchen table & counters, or when she climbs up on the toilet in the guest bathroom and turns on the water just to play in it:
- She's on the go non-stop from the minute she wakes up until she goes to sleep and is very wound up and rowdy ALL. DAY. LONG.
- She has very little awareness of danger.
- She's been packing her mouth FULL of food but has no intention of actually eating any of it, she just likes the sensation of having her mouth full.
- Her speech has gotten lazy and some of her sounds have gotten really soft. (Her T sounds like an S, etc.)
- She has a really difficult time going to sleep at naptime even if she's really tired.
- She doesn't want anybody to touch her, especially on her arms, legs, hands, & feet.
- She's spitting out most of what she puts in her mouth, which is drastically less than she was "eating" a month ago.
- She runs and jumps everywhere instead of walking, and often ends up running into doors and walls.
- She is SO easily distracted and has absolutely ZERO attention span, even for a 2 year old. Getting her dressed takes forEVER because she is so easily distracted and I have to give her constant verbal cues and repeat them several times before she follows them.
- Overall, she's just had more difficulty coping with her environment.
What does OT do for Raya?
I can't explain all the technical aspects of how & why OT works, but what I do know is that the things occupational therapists do help the body to be reprogrammed in a sense. If you're listening to the radio and the station isn't quite coming in clearly, you adjust it so that it does. For a child with SPD, their signals are crossed. Their body is misinterpreting the signals it's getting from the environment, both outside and inside of the body. OT helps the child's body to perceive his or her environment accurately so that he or she can respond appropriately to the sensory input the body is getting. (See, that's why nobody knows what OT is. It's way too complicated to explain! :)
After 2 weeks of no therapy, I was starting to wonder if I should just go ahead and find a new therapist from another clinic even though I really didn't want to so I was thrilled when I got a phone call that they had an opening for her at the clinic. Then I got another call a day or two later saying that they had 2 openings with the same therapist and we could have them both if we wanted them since she had gotten approved for a 2nd hour of OT per week when we were doing pool therapy. I seriously almost cried because I have wanted Raya to be able to get OT going again so she can get back to her previous level of function & comfort. It has been sad to watch her struggle to function normally and have a difficult time just coping with her day-to-day 2 year old life.
What do they do at OT?
We've done a lot of different things at OT. To someone just observing therapy, it looks like all they're doing is playing most of the time, but all the activities have a specific purpose and vary depending on what the child's needs are that day.
We had our first appointment with her new therapist yesterday and 2 minutes into the appointment, I was already feeling a HUGE weight lifted off of me. Since we're at the same clinic, her previous therapist was able to give her new one an intro to Raya, and her new therapist seems to be genuinely excited to work with her. We're in an environment that Raya is completely familiar with and comfortable in so we don't have to wait for her to adjust to a new clinic, which is huge. We talked about what the biggest issues seem to be and got right down to business. We went into a teeny little room with no windows, turned off the lights, turned on a blue light and some special music and Raya got a massage with lotion. Her therapist went through the sensory protocol that I've been failing miserably with at home and we left with Raya being more relaxed than I've seen her in a month. I almost cried again when we were driving home and I saw her in the rear view mirror asleep.
We had our second appointment this afternoon and it was even more amazing than yesterday. We went through the same routine that we did yesterday with just slight modifications. Raya lounged in a bean bag chair while her therapist massaged her feet, legs, hands & arms with lotion. (remember, she's been VERY resistant to having her arms & legs touched, let along her hands & feet) With the dim blue light on and music playing, Raya relaxed quickly. Heck, I wanted to curl up in the corner and take a nap myself! :) When the massage & joint compressions were over, her therapist picked up the whole bean bag chair and set it on the platform swing that was hanging from the ceiling. Raya laid back in the bean bag chair while the swing moved back and forth. Within 10 minutes, she was in a deep and peaceful sleep. I almost cried again. It really was amazing to see this child who, for 3 weeks, has been bouncing off the walls all day long and unable to calm herself down and be still finally able to relax and go to sleep so quickly. I was so happy for her that she was finally getting some peace.
The rest of the session we just talked about how to recreate that experience at home and why it was effective for her. When it was time to go, I carried Raya out to the car and although she woke up, she was still deeply relaxed. The whole way home, it looked like she was about to go back to sleep but she never did. A tear or two may have escaped while I was driving home. Words can't really do justice to how good it feels to see her getting relief from the chaos that has been going on within her own body.
When we got home, she was still very relaxed and it seemed like she almost didn't know how to react to the way she felt. She didn't want me to put her down so we went upstairs so we didn't wake up Kaida, who was asleep on the couch. I wanted to keep Raya in her relaxed state as long as possible so we sat on one of the beds upstairs and read books. That has NEVER happened before with Raya. In her entire 2 years of life, she has never had the attention span or the ability to sit still long enough to sit on my lap and read a book until today. She can't ever sit still for the whole book, but today she did. I read her the first book twice and then she said she wanted another one so she brought me one and I read her that book too.
When we finished the second book, she was done and started flopping around on the beds and running around like usual, but it was so good to see her relaxed for a while and see that she is, in fact, capable of sitting still. I went through most of the protocol this evening before I put her to bed but due to the lack of platform swing hanging from the ceiling, we didn't get to do that part and I don't have an adequate substitute for it yet so she flipped out when I put her in bed. I am feeling SO much better and feel like hope has been restored once again now that we have OT back. (Can you hear the heavenly chorus singing?)