07-19-2010, 05:51 PM
My son was diagnosed last year, just before he turned 4. We had been concerned about him from early on; he was horribly colicky, hated bright light (would just scream and scream for car rides), didn't crawl, and was always 0% for weight and had no muscle tone. He also had what appeared to be a slightly crossed eye, or what we now think might be convergence excess (we have to get back to the eye doctor, but we're waiting for our new insurance to kick in). Once he began walking, he would fall down a lot. He has a big chip in his tooth and a faint scar on his forehead from all the spills he took. And then he couldn't seem to run, and couldn't jump at all. He was terrified to move from one surface to another, wouldn't climb ladders or go down slides, wouldn't crawl through tunnels. So we had him evaluated by NY state early intervention, and he was approved for PT. Not OT. PT. He had that for a year and a half, with us regularly saying, "okay, yes, but WHY is he this way?" and nobody, not the evaluators, not his pediatrician, not the PTs, nobody saying, "Hmmm. Might be SPD." Finally, his grandmother, who knew of SPD and a therapist who specialized in it, urged us to have this new therapist do a private evaluation. It was immediately clear. He also has touch issues, sound issues, visual issues, taste issues as well as proprioceptive and vestibular. He is still only in pre-school, and the school has been understanding and sympathetic, making some adjustments for him. We have concerns, though -- the school is a real hippie place, but the lack of structure doesn't seem to help him. He also has a bully problem there (those bully kids of 21st century hippies). He is finally going to be getting OT at the local public school, where he'll start kindergarten in 2011, which is great (we've been paying privately for OT since August 2009).
My wife and I are exhausted, as you all can imagine. We simply adore him -- he is one of the funniest people I've ever met, is incredibly imaginative, and clearly brilliant with details and especially with language.
Even though the diagnosis is almost a year old, I feel like I'm finally waking up to the reality of SPD in our daily lives...and as a result, handling it much better. I also have to credit resources like this forum, Sensory Planet, and the wonderfully helpful book, Raising a Sensory Smart Child by Linsey Biel and Nancy Peske, to helping my wife and I better handle the daily challenges we face with our guy. We are learning a lot more what preparation we need to give him, what tactics we can use to avert a meltdown or stop it quickly if it occurs. I am learning more about how much I need to educate family members and friends about what it feels like to be in his body and get the kind of information his senses receive, so that they can better understand that he's not "being a baby" or "being cute and quirky" or "being unreasonable." But even with people who are clued in, it's amazing how much they don't get it. His grandmother, who introduced us to the existence of SPD, invited us to watch fireworks this 4th. When I told her that he absolutely hated fireworks, would cover his ears and eyes and hide in the house, she said, "Well, now, keep an open mind, he might come around." I know she's trying to be positive, but it can't help but feel like she's dismissing a very real neurological condition as a mood he can just get or grow out of.
Anyway, I'm happy to be part of this group.
My wife and I are exhausted, as you all can imagine. We simply adore him -- he is one of the funniest people I've ever met, is incredibly imaginative, and clearly brilliant with details and especially with language.
Even though the diagnosis is almost a year old, I feel like I'm finally waking up to the reality of SPD in our daily lives...and as a result, handling it much better. I also have to credit resources like this forum, Sensory Planet, and the wonderfully helpful book, Raising a Sensory Smart Child by Linsey Biel and Nancy Peske, to helping my wife and I better handle the daily challenges we face with our guy. We are learning a lot more what preparation we need to give him, what tactics we can use to avert a meltdown or stop it quickly if it occurs. I am learning more about how much I need to educate family members and friends about what it feels like to be in his body and get the kind of information his senses receive, so that they can better understand that he's not "being a baby" or "being cute and quirky" or "being unreasonable." But even with people who are clued in, it's amazing how much they don't get it. His grandmother, who introduced us to the existence of SPD, invited us to watch fireworks this 4th. When I told her that he absolutely hated fireworks, would cover his ears and eyes and hide in the house, she said, "Well, now, keep an open mind, he might come around." I know she's trying to be positive, but it can't help but feel like she's dismissing a very real neurological condition as a mood he can just get or grow out of.
Anyway, I'm happy to be part of this group.
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