Sensory Integration Disorder Support Group
Sensory Integration Disorder is a neurological disorder causing difficulties with processing information from the five classic senses, the sense of movement, and/or the positional sense. Sensory integration disorders vary between individuals in their characteristics and intensity.
I had to share with someone who would actually understand and not look at me like what's the big deal...
Clara and I were at Subway for lunch (school got out at lunch today for a retired teacher's funeral). We were standing in a long line when Clara asks if I had chap stick for her. No I said, my purse is in the car. I asked her if she wanted to go get it (this was a trick just to pacify her to prevent her from melting down because it's a huge regulation issue around her chap stick; she even has to have it in her backpack at school). To my surprise, she says yes. To myself I think, this is headed for tears and a meltdown, but I give her the truck key and show her which way to turn it to unlock the truck; the only instruction I give her is make sure you don't lock the keys in the truck for any reason. We had Nathan's work truck (our personal vehicle is in the shop for transmission problems) that doesn't have a clicker but just a regular key. It's a small town and the car is in the first row against the building so cars driving by wouldn't be a problem. She promptly leaves. About 5 minutes goes by and I'm about ready to lose my spot in line to go find her (presumably curled in a ball next to the truck crying is what I figured at this point). Just then I see her open the door to Subway (with great effort). She walks over to me holding my purse. The only thing shes says to me very relaxed is did you know that the key kind of gets stuck after you unlock it if you don't turn it right? When we left after eating lunch, I noticed she had even relocked the truck. I was so proud of her especially knowing it was Nathan's truck and she's not extremely familar with how to even open up the door to the truck (she just learned that over Thanksgiving break and struggles with it still) much less using the key (she had never been asked to do that before).
Sad thing is her friend's mom came over to me (while I was praising Clara) and told me I really shouldn't make a big deal out of it; if I praise her for every "little thing" it would give Clara a superiority complex. If only some of her friend's moms understood (there's several like this). I'm getting really sick of them making comments like that or telling me their kids do that too (like having regulation issues after school)...yeah, I bet you do is what I feel like saying...but I usually bite me tongue. I find explaining SPD is of little help. Anyway, just had to share with someone who would understand what a big deal this was for her.
Clara and I were at Subway for lunch (school got out at lunch today for a retired teacher's funeral). We were standing in a long line when Clara asks if I had chap stick for her. No I said, my purse is in the car. I asked her if she wanted to go get it (this was a trick just to pacify her to prevent her from melting down because it's a huge regulation issue around her chap stick; she even has to have it in her backpack at school). To my surprise, she says yes. To myself I think, this is headed for tears and a meltdown, but I give her the truck key and show her which way to turn it to unlock the truck; the only instruction I give her is make sure you don't lock the keys in the truck for any reason. We had Nathan's work truck (our personal vehicle is in the shop for transmission problems) that doesn't have a clicker but just a regular key. It's a small town and the car is in the first row against the building so cars driving by wouldn't be a problem. She promptly leaves. About 5 minutes goes by and I'm about ready to lose my spot in line to go find her (presumably curled in a ball next to the truck crying is what I figured at this point). Just then I see her open the door to Subway (with great effort). She walks over to me holding my purse. The only thing shes says to me very relaxed is did you know that the key kind of gets stuck after you unlock it if you don't turn it right? When we left after eating lunch, I noticed she had even relocked the truck. I was so proud of her especially knowing it was Nathan's truck and she's not extremely familar with how to even open up the door to the truck (she just learned that over Thanksgiving break and struggles with it still) much less using the key (she had never been asked to do that before).
Sad thing is her friend's mom came over to me (while I was praising Clara) and told me I really shouldn't make a big deal out of it; if I praise her for every "little thing" it would give Clara a superiority complex. If only some of her friend's moms understood (there's several like this). I'm getting really sick of them making comments like that or telling me their kids do that too (like having regulation issues after school)...yeah, I bet you do is what I feel like saying...but I usually bite me tongue. I find explaining SPD is of little help. Anyway, just had to share with someone who would understand what a big deal this was for her.
As for the comment from the other parent, I will be the first to admit that, while I would never have been so (in my opinion) rude as to say something like that to another parent, before I actually was a parent I had all sorts of ideas about how children should be raised and how and what parents should or should not do. I would see parents with kids out in the world and I would make all sorts of judgments. It's sort of embarrassing to acknowledge it now, and painful, because I can feel that kind of judgment from others, even when they say nothing, and I imagine that others felt it from me.
My son has been an incredible lesson in non-judgment and compassion for me. I have had to learn that, no matter how well intentioned a parenting approach or child rearing theory, if it doesn't work for your particular child then you have to let it go. I caused both myself and my son a lot of suffering trying to hold onto my ideas about what was "right." It was hard for me to let go and accept that my son was simply not going to see, hear, feel and understand things in the ways that typically developing children do, and so many of the ideas I had believed I needed to adhere to were developed based on the assumption of typical development.
I read a suggestion recently from a mom whose daughter is autistic about having small cards on hand to give to people who make unwanted comments -- cards that express whatever you personally feel needs to be expressed, whether it's an explanation or a request that they keep their opinions and ideas to themselves. I haven't done it yet, but I think I will, because in addition to the futility of having conversation on the subject with most people, it feels unfair to me to be discussing my son and his challenges with total strangers (or even people we know) in his presence and it is upsetting to him. I'm thinking I might just write something along the lines of: 'I do not talk about my son in his presence as though he weren't there, and I would appreciate it if you didn't either.'
Thank you for sharing that story -- it's the accumulation of those individual rays of hope that make you look around one day and realize that the sun is shining and everything is really going to be okay...
I just had a few tears myself explaining to my son's OT last week that as a result of the 2 weeks of brushing, he has now almost stopped "mouthing" objects. Something like that may seem very small to most parents of kids who do not experience SPD, but to me it was a huge step forward.
My son is 5, I'm glad to hear that it does get better :-)