SPD Support Forum

Hello my name is Teresa and I am a mother of a SPD child.

Thomas and his twin brother arrived early on March 10th and Thomas was only 3lbs 12ozs at birth. He spent time in the NICU and came home about two weeks later. Thomas was place into an Early Intervention program at 4weeks of age. Thomas had Torticollis and a sever case of Plagiocephaly and was placed in a corrective helmet for 10 1/2 months. As Thomas got older he did things later than his twin and when he started to not speak at 18mths we where very worried. His Intervention team feels he has SPD and we are on a wait list at The Children's Hospital of Philadelphia to get him evaluated.

I found this group on the suggestion of my Sister-in-law and I guess what I am looking for is:

-What tip/tricks do people have on helping my son when he has his meltdowns.

-If there are any support groups/playgroups for SPD children in the Philadelphia area?

-Is there any articles or speaker training notes on how to best describe my son's issue to family so they can understand what he goes through as well as what we as his parents have to deal with when you have a SPD child.

-Also has any Doctor or group seem to be the best in dealing with getting acurate diagnosis'? Is there anyone doing any real promissing research into this area of study?

Thank you all!

Hi Teresa! Welcome!

I had my older son evaluated and diagnosed at a pediatric OT center. My son's school had recommended them. I had filled out the checklist on this site: http://www.sensory-processing-disorder.com/ and brought that with me. Then based on my observations and their testing, they did a 12+ page evaluation. I gave that to his Ped and to his school. Now that he's older, we don't do OT anymore but he goes to a social skills group every week.

I'm sure you can google SPD groups in Philly to see if there are any. I'm in CT and haven't found any support groups, only online places like this and on Facebook.

As a quick explanation, I often say: For my older son who is sensory defensive, his volume control is set too high. Everything feels too loud, too bright, too hot, too much for him. For my younger son who is a sensory seeker, his volume control is set too low. He needs lots of everything to feel it. He talks louder. He wants it faster, louder, harder, more of everything. There are some other examples: http://www.sensory-processing-disorder.c...rders.html

Helping with meltdowns is very individualized. The best thing you can do is to avoid the meltdowns in the first place. Learn his triggers and avoid those things. When my older son was younger, loud sudden noises caused meltdowns, so I found that if I warned him and prepared him, he was better able to tolerate it. "I'm going to turn the vacuum cleaner on now. It's going to be very loud. Do you want to cover your ears or go in another room?" He wouldn't eat any food that was hot. So I learned to cook his food, put it on a plate, then put the plate in the freezer for 5 minutes. Then he would eat it no problem. Both my boys were deathly afraid of people in costumes (like Chuck E. Cheese mouse, Blues Clues, Mickey, etc), so we stopped going to any place that had people in costumes. If one was somewhere we didn't know it was going to be, we allowed them to be as far away as they felt they needed to be.

You could also encourage gross motor activities. Now that it's summer, I encourage my boys to jump on our trampoline, ride their scooters (and bike now that my older son knows how), swing. We go to a park with a spinning thing (flat circle with bars to hold on to, not sure what to call it) and I let them spin as much as they want (so they don't need to spin in our swivel chairs as much). I try to remember to have them do wheelbarrows up and down our hallway. Also try to have them help carry heavy things for me, bring the groceries in the house for me, bring the clothes hamper down to the laundry room for me.

And sometimes you can't win. Sometimes the meltdowns happen no matter what you do.

Good luck! Hope you can get him evaluated soon!

One thing that might help with the meltdown is turning off all the lights and if there is a TV/music on turning that off as well. Basically remove as much sensory input as reasonably possible. Put a blanket within reach so that he can wrap it around himself as needed for pressure (weighted blankets may or may not be better than a generic blanket).

If you have to talk to him during the meltdown keep your voice calm, quiet, and clear.

Thanks for the tips I will try them. Anything to help him get over the meltdowns faster.