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+--- Thread: My son was diagnosed last year...and it's still sinking in (/thread-76.html)
My son was diagnosed last year...and it's still sinking in - johnplummer - 07-19-2010
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.
RE: My son was diagnosed last year...and it's still sinking in - Dani - 07-20-2010
Hi there
.Welcome to SPD International. Great to have you here.
(07-19-2010, 05:51 PM)johnplummer Wrote: hated bright light
would just scream and scream for car rides,
didn't crawl
0% for weight
had no muscle tone.
convergence excess (eyes not converging)
fall down a lot.
couldn't jump at all
terrified to move from one surface to another
wouldn't climb ladders or go down slides
wouldn't crawl through tunnels.
What about me? LOL, I had every one of those issues as a child. Many of them are still issues today. Those are all trademark SPD symptoms there. Your son sounds pretty textbook...
Quote:It was immediately clear. He also has touch issues, sound issues, visual issues, taste issues as well as proprioceptive and vestibular.Boy was I not surprised to see this. My diagnosis was pretty immediate too. I also wouldn't be surprised if smell issues come up too at some point, given that that's the only well known sense not listed there. You can also probably look for issues in the interoceptive sense (article about that in our Sensopedia wiki).
Quote:he is one of the funniest people I've ever met, is incredibly imaginative, and clearly brilliant with details and especially with language.Awww... wow! The more I read, the more he sounds incredibly similar to me, lol. Well, I'll let you be the judge of my humor and linguistic brilliance though
.Quote: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...Even though my diagnosis (my initial diagnosis of SID, long story there) was 21 year ago, I feel like I'm just waking up to the reality of it, lol. Who? Me? Really? lol
Quote:Sensory Planet and the wonderfully helpful book, Raising a Sensory Smart Child by Linsey Biel and Nancy Peske,Two pretty good resources they're, I'll agree. Carrie set up Sensory Planet, and as much as I love it, I would like a place where people not only don't ever have to pay anything, but also (hopefully) feel a lot more free to discuss other topics and get to know each other as well as just give and seek advice.
"Raising a Sensory Smart Child" is also an awesome book, I must say. It's easily in the top 3 most valuable for an SPD parent, IMO. I also have gotten to know Nancy a bit over the past 2 years via email, as she's on one of my other groups. She's a great lady, really is
.Quote: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,This is why I wrote my article on meltdowns and posted it to SPD Parent SHARE. If you haven't read it, I think it might just be helpful for you:
My SPD meltdown article
I am really glad to have you here. I hope you enjoy your time on the group. Feel free to drop by the chat room sometime, or drop me a line
. Best wishes to you and your family.-Dan
RE: My son was diagnosed last year...and it's still sinking in - mawkinberd - 07-21-2010
Wow, sounds like you have an amazing son! I'm glad you're here to take part, learn more, share with us. It sounds like you've had an incredible journey, and I look forward to hearing more about you and your family.
RE: My son was diagnosed last year...and it's still sinking in - Justinsmom - 07-29-2010
Your story is very touching.I am a mother of a child with SPD, when my son was first diagnosed I cried alot. Now I just see what a incredible child he truely is. I have learned so much from my little man and my life will never be the same. I thank god for him everyday.
Best of luck to you and your family.
Dina
RE: My son was diagnosed last year...and it's still sinking in - zzzz 23425 - 10-12-2010
it was really sad to read your story . but never give up hopes are the light we live for .
wish you and your family all the good luck in the world .