I had an uncomfortable car ride home last night.
We'd had a lovely time with AuntieS and the JoyDad family, much good food and conversation and egg-hunting. Then we bundled the girls into their footie-jammies and our stuff into the car, and headed out to drive the couple-of-hours home.
I don't know whether it was the too-much-good-food, or the antihistamines I took 'cause I'm allergic to the pets at AuntieS' place, or the allergy reaction, or something else, but I could not get comfortable in the car.
It felt like my skin was too tight. It felt like I needed to stretch my legs, only the stretching I could do in the confines of the passenger seat didn't help. My leg muscles and knee joints felt "off". I needed regulation and couldn't find it! I wanted to get out of the car and run, or have someone hold my hands and "jump" me in the big soaring jumps that we do for Joy. I kept shifting and twitching, trying to find a comfortable position, probably annoying the heck outta JoyDad.
Joy, meanwhile, had slept on the earlier half of the trip, and was not about to sleep on the way home. She kept pushing my seatback with her feet, which irritated me beyond usual bounds.
And I had to wonder...
Is this maybe what it feels like for her ALL THE TIME?
13 comments:
Seems logical to me.
Barbara
After a really uncomfortable IEP meeting for my older daughter, her OT commented that the same sort of anxiety I was feeling at the meeting is probably how Laurie feels all the time. Puts in perspective how really difficult it is for them.
in a weird way, i live for those moments .. when you feel like you have a little glimpse into how it feels. or not. but maybe.
If that is the way our kids feel it makes me admire them even more for all they are able to accomplish. Also makes me wish I could do even more to help my daughter get the regulation she needs.
Yep, I can only echo the other comments. If I could just get a moment to feel what Nik feels and experiences...wow, the value of those moments is untold!
Yes, that is a lot like how it feels. What you described -- esp. with the antihistamines involved -- sounds a bit like Restless Legs Syndrome (RLS). Which I have, in addition to AS and all my other fun diagnoses. When RLS is bugging me, it is like Aspie/SPD symptoms amplified 20X. I have literally contemplated jumping out of a moving car at times, when the combo of RLS and sensory overload have had me in their grips.
I'm sorry that you were so uncomfortable as you were heading home from my place. It is quite an amazing thought, though, to think that Joy may feel this way most of the time. It makes me even more appreciative of her generally happy nature despite such uncomfortable sensations. She seemed pretty calm yesterday, in her mood, and happy to play with the pinwheel and that prickly rubber stretchy ball that the Easter Bunny "left" here for her! Joy did cause JoyMama to have to practice her sprinting skills while we were out in our unfenced yard for the egg hunt, but even then, Joy seemed calm and pleasant. I also think she is pretty cute with the new buzz 'do. To me, the hairstyle does point up how much she looks like JoyDad did when he was a little kid. I'll have to look for more baby pics of him to show you!
I hope you felt better once you were home and out of the car, and I hope that Joy has times when she doesn't feel this way!!
-AuntieS/ARatK
This is a very good point. I too get like that sometimes. For me, it happens when I get into bed at night. It's like someone releases a million ants and they're crawling up and down my legs. ARCHG!!! How awful if this really is how Joy feels all the time, huh?
What great insight. I also have RLS (very mild and occasionally) but I've never had the insight to think about that related to my child's feelings. (Thanks for that!)
I do think, though, that PMS is God showing me what I would be like without the Holy Spirit. And that, is incredibly terrifying!
Finally de-lurking here to say that I think that was so perceptive of you. I've spent years trying to get inside my son's head to figure out how things are for him (he's now 14). I think you're ahead of the curve!
QuirkyMom - thanks for the validation about how RLS and sensory issues interact for you! Now if only Joy could tell me how it is for HER... sigh.
AuntieS - you did an AWESOME job as Easter Bunny for both Joy and Rose. Joy just loved her pinwheel and prickly ball, and Rose was thrilled with the colored pencils & sketch pad and especially the Sudoku! Well played, all around.
Elizabeth - whoo, scary PMS insight! :-)
Tanya - lurkers are welcome, but comments are even nicer! Good to see you here.
Speaking from personal experience, yes, that is often how I feel - and how my husband and two children often feel. Ah, spectrum life. Sucks feeling like that, eh?
Interesting observation JoyMama.
My daughter isn't on the spectrum, but does have some learning and processing disabilities. Years ago, a specialist names Rick Lavoie created a workshop that parents, teachers and siblings could take that would help to make them feel learning disabled. I got the video of it. It was amazing! I so much more have an understanding of what my daughter goes through every day. I wish there was something like this for people who have kids on the spectrum.
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