My three-year-old daughter has always seemed to react a little differently to the world than her peers do and I'm starting to suspect SPD/SID (or whatever you want to call it!). She was a very colicky infant and reacted strongly to lights, sounds, textures and was also delayed on her gross motor milestones. Now at three she's a very verbal, imaginative, spirited, fun girl who can be brought to hysterics by loud sounds, heights, dogs, bugs, etc. I think that she clearly needs help finding ways to navigate these stimuli without fear but I'm wondering where to go and what to do. My pediatrician so far hasn't seemed too concerned about it, saying she'll outgrow it but I fear I may not have communicated my concerns well and plan to make an appointment again to press the issue. I guess I'm just looking for any advice other moms with similar experiences can share. Particularly if you have an OT you love and can recommend, etc. or advice on how to communicate with the pediatrician so she really hears me. Thanks much!
Go to yahoo groups and search for "Sensory Integration Disorder Group." When you join, you can read all sorts of stories and situations. Hopefully, you'll get some helpful answers there.
I highly recommend an OT eval. My kids have worked with Lise Coston who is part of Therapy Steps run by Susan Nessmith - you can reach her at ###-###-####.
I also recommend the book 'How Does Your Engine Run?' - it explains the basics of the Alert Program. Here's a link to Amazon: http://www.amazon.com/Introduction-Does-Your-Engine-Self-...
Hi S M,
I have lived your shoes. There is only one chance of your daughter fully recovering (which is completely possible, my son is living proof of recovery) and that chance is YOU! The science is there and SID is totally an issue that is medical and in the body. The nervous system is affected and later, the brain. Both can be reversed. Here are some immediate things to read:
1) Healing the childhood epidemics, Kenneth Bock, MD.
2) The Sensory Sensitive Child
3) www.spdbayarea.org
4) www.generationrescue.com
5) www.crossroadsinstitute.org
Some first steps:
1) Get an appointment with one of the lead floortime therapists at www.floortimeatlanta.com. It will help you understand what she struggles with and how to support her.
2) Change her diet. Remove all milk products and then gluten. Search online for "10 weeks to GFCF". Gluten and milk have an effect on the immune and thus nervous system. Consider getting and IGG test to confirm other food sensitivities.
3) Book an appt with www.floortimeatlanta.com, OT side (I love J. McGuire, but the eval will be done by the lead - Mili Corderos).
4) I am a consultant working with parents to guide. Feel free to send a note if you would like more info on taking a step at a time.
DO NOT accept anything except an expectation of recovery. It will take 3-4 years of hard work, but it is so worth it!
J.
Early intervention is best! I totally agree. The best place, in my opinion, to get tested is in Duluth at this place. People come from hundreds of miles to get tested and go to therapy. My two oldest boys...well one of them goes to therapy now there and the other will be getting tested soon. It's an awesome place! They do many different kinds of therapy there..kind of like a one stop shop. Here is the website...
Insist to your ped that you get an OT referral for an evaluation. I have two friends whose kids have SPD, and both are now 5. They both started OT and speech therapy when they were 3, and it made a HUGE difference. They're happier kids now, and don't have a lot of the fears and frustrations they used to. You're her mother, so be the boss. The ped is your employee.
Good for you, catching this early. If she does have SPD, early therapy can make a world of difference.
We have a son with sensory integration disorder who is now nine. He was almost 4 when he was diagnosed. I can't stress enough how important early intervention is. Some pediatricians aren't familiar with SID, or don't "believe" in it. Trust your instinct. We got an overall evaluation and diagnoses at Children's Healthcare, then found our own occupational therapists. And it's tough, there's not a lot of them out there. Our last therapist was at Kid's Creek in John's Creek, and I think that was our favorite place of all.
Our son is almost 10 now and I can tell you that all of the therapy really did make a difference in his progress, but also in helping you understand what's going on with your child, and what to expect, what to not care about. For instance my son has clothing issues, can't get the boy in a pair of shorts. It used to really bother me in the summer that he always wore long pants, now I realize in the big scheme of things that's really not big deal. How's he's doing in school, relating to peers is more important.
Good luck!
My 6 year old daughter also has SPD and my advice would be to get her evaluated by an OT as soon as possible. The earlier therapy can begin, the better. We saw an OT at Children's Healthcare of Atlanta, North Druid Hills location, but she's no longer there. I would still recommend that facility, but they're very expensive if you don't have good insurance. There's also a good book about these kids called The Out-of-Sync Child.
Good luck to you!
G.
Get yourself the book The Out-of-Sync Child Has Fun, if you haven't already. This explains sensory integration disorder and gives you a boatload of activities to do with your child to improve her sensory integration. It is a wonderful book.
What you are describing is sensory integration disorder. ANd some do grow out of it...but the social and esteem damage that happens while they grow out of it, lasts a life time.
It's usually a pathogen in the body that is putting stress on the nervous system. Mercury, mold, formaldahyde, chemical poisons, et al. My son who is now 17 was diagnosed at 4.
I recommend highly putting her on liquid pycnogenols, doing some cranial sacral therapy, giving her a digestive enzyme with her grains, and if you can afford it, occupational therapy. We also had luck with Samonas Music Therapy and the brushing system. Personally, I would never give her another immunization until she was "normal" if ever.
Good luck. It wasn't easy living with someone who has an exquisitely sensitive, under developed, poisoned nervous system.
