Advice for Toddler W/sensory Integration Disorder

Hi C. - There are a lot of moms out there in your shoes, and boy am I one of them. I have been dealing with it for a year now. My son is now 3 and was formally diagnosed with this at 2 yr. 9 mos. Before that, the endless unknown tantrums the loss of speech and the fears for what appeared to be no reason were overwhelming! And as I write this - I have just spent the last 12 hours doing more yelling then playing with my kids because my son has been having a bad day! I will privately email you my direct email and will gladly discuss specifics whenever I can help. But first and foremost know that you are not alone! If you are in EI, try to talk to your therapists about support groups - or respite care. I also found that taking my child to a nutritionist has helped a lot. IT turns out that he was so protein and fat deficient, from his self limiting foods from the sensory issues that his brain was "starving" and making his behavior worse. Also know that after about 3 months in therapy - you will most likely start to see more "regulated" days and more even behavior. I will be in touch.

Hang in there!
M.

My son doesn't have this disorder, but he has a speech delay and possibly a speech disorder. But, I do relate in that I know that you try so hard to not get frustrated and mad at the situation, because you know they can't help it, but it is so hard and wearing on you. Exhausting at times. Heck, kids this age without a disorder are tough enough, then throw this in the mix it makes it even worse. I know what helped me was to visit friends with kids and call my friends frequently- but make sure they are friends that truly understand what you are going through and can relate. Even though it is embarrassing to have other moms see you struggling, it really does help in the long run. Plus, we stopped going to stores and restaurants and stuff as much for a while because it just added stress to the situation. Finally, try to get a mom's night out or a date night in every week or other week. Or, have someone watch you child and you go out shopping. You need frequent breaks to recharge. I also urge you to find an internet support group with children with disabilities related to your child's. Just knowing and hearing others issues will help you know you are not alone. *Hugs*

The NISRA program offers things for kids with disabilities. A lot of people I know have done a lot of these programs and they really like them. Plus, it gives you a chance to meet other parents that are going through similar issues in having children with disabilities. So, check them out at www.nisra.org. I know that in McHenry County they just started parent-child playgroups for kids ages 4 and under. They have groups from 10-12AM at:

Crystal Lake Main beach activity room on some Wednesdays. Call ###-###-#### ext 238 to RSVP and get the exact dates.

Harvard Library on some Mondays. Call ###-###-#### ext 238 to RSVP and get the exact dates:

Marengo Park District Rec Center on some Thursdays. Call ###-###-#### ext 238 to RSVP and get the exact dates.

Woodstock Library on some Fridays. Call ###-###-#### ext. 238 to RSVP and get the exact dates.

Hi C., I am a stay at home mom of a 3 yr old son with SPD. He was diagnosed this past February while we were in EI. He is a daredevil, sensory seeking, sometimes difficult boy who has just flourished with OT and ST. We were in EI for only 6 months and then he entered our school district's Early Childhood program. We lucked out with a self contained class and have a wonderful teacher with a great Spec Ed background and Autism background so she is very familiar with sensory issues. I can't tell you how many people family and friends alike noticed a change after just a couple months. Now people that meet him have no idea that he has SPD. He's in the beginning stages of learning to self modulate. We still have our days and after he turned 2, the tantrums and dinnertime were miserable. I agree with supplements 100% due to their tendency to have oral/motor sensitivity issues with certain foods. I give my son Coromega Kids brand Omega 3 fish oil for brain & CNS function and also Pedi-Active (contains DMAE) for focus and attention. Both made a HUGE differnce in the 30 days before school and since it started. We are now in the evaluation stages prior to our IEP in November. I will be curious to see what services our school gives our son. I also belong to 2 support groups. PIFFA(PayItForwardForAutism) and SPDIllinois. Both are great resources for info and support. Not sure what suburb you live in but check out in the NW burbs:

SPDIllinoisShare at http://groups.yahoo.com/group/SPDIllinoisSHARE/

and

www.piffa.org

I like both groups but the autism group has been established for quite a while and even though our son
doesn't have austism they are great at offering help, support and suggestions because autism and sensory issues go hand in hand.

Feel free to email me at ____@____.com if you want to chat further.

Judy

Hi,

My child has this also. Her main issue was certain sounds would bother her, and sometimes still do. She didn't have any of the other sensory issues as far as touch goes. She qualified to get what they call listening therapy. Basically, what this was is listening to certain types of classical cds that have different pitches and sounds in them, to get her used to them. We did this for a few months off and on. We would have her listen to 3 songs per day for 3 weeks then take a break for 1 week and start again with a different cd. You may want to ask your speech therapist or someone involved in Early Intervention and they can test for this.

Hope this helped a little bit.

Good luck!
S.

My seven year old has sensory integration disorder and (diagnosed later) ADHD. He had about 18 months of occupational therapy starting when he was 5, and "graduated" last summer.

I'm sure every kid is different, but he has improved a lot with time and therapy. His issues are related to coordination/balance and he is highly sensitive to sounds and smells. He also was a big sensory-seeker, especially in preschool - could not walk down a hallway without touching the walls, could not walk past our car without stroking the paint and smelling the tires. Instead of sitting in a chair he was always trying to be upside down in it. And he reacted really badly to noisy, echoey environments - his behavior would become just widely out of control and it took us a long time to make the connection and figure out what the deal was.

I can tell you that it did get better over time. And it was and is hard to be patient. Forgive yourself for being imperfect, but remind yourself that he isn't experiencing the world quite the way we are and it's hard. Good luck!