Very new to PDD..looking for some guidance

[deleted account] ( 3 moms have responded )

Just found out our son has PDD. I have just feeling overwhelmed with emotions. Looking for a support group in the Chicagoland area plus I am looking for books for me to read. I am really struggling with this and could use some help!!!


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Jennifer - posted on 03/16/2009




My daughter was diagnosed with PDD-NOS a year and a half ago. She is 3.5 right now. It was very hard to deal with at first and can still be very frustrating. Early intervention is key. As soon as I got the diagnosis I was on the phone calling ECI (Early Childhoon Intervention). It is a federal program that allows you to get help without breaking your wallet. Now she is in public school in Special Programs and is dong great. She is constantly changing.

Also, on a side note - I changed her diet to the Gluten and Casien free diet. It worked wonders with her. In six months, she started walking and interacting with people and kids - it was amazing. She also has sleep issues which from what I understand now is normal for PDD-NOS. I've started using melatonin and that helps a lot too. Good luck with your son - it is going to be a hard time but it is totally workable. My daughter is so special and it is great watching her blossom out. My favorite moment is when she hugged me for the first time - it is a moment I will never forget.

Suzanne - posted on 03/15/2009




I very much agree with what Jennifer wrote to you in her reply. I have a 5 yr. old daughter diagnosed with PDD-NOS. It can be a very difficult journey with autistic spectrum disorders. I dealt with the outside ignorance of family, friends, and even her own father. The very long period of not having a diagnosis, and being in a sort of state of limbo. Then navigating through the diagnostic labels, and criteria, which are not clearly defined amongst many physicians, it can be confusing at best. I was always grasping for some absolute understanding of my daughters experience, so that I could feel certain that I was doing the very best for her. I've realized now that even though I think that I understand her better then anyone, I may never truly know her experience. It is a roller coaster ride, but as Jennifer said it does continue to evolve, and my daughter has moved past many of the struggles that where present a few short years ago. Unlike typical children, these kids pave their own path, and it is always uniquely their own. I believe that early intervention is the key, they really need the sensory and social support ,that comes without effort for most children. And if you can, try and find a good strong support system for you. I wish I had. The behavior issues associated with autism disorders can be very difficult to deal with. This disorder is very hard for the general public to understand, we are social creatures, and because we associate value and character with social skills, you may not find the same type of sympathetic response from strangers in public that another illness would initiate. So not only do you have to contend with the immediate needs of your child, but also the stares, and sometimes presumptuous comments of onlookers, because autism has no outward identifiable physical characteristics that usually cue people, of an actual disorder, and not just bad behavior and bad parenting.
Just know that your son while continue to move forward!!
Much luck and love to you, and your boy.

Jennifer - posted on 03/10/2009




I am in the Chicagoland area, NW suburbs to be precise. I belong to an Asperger's support group, but a lot of what we talk about really crosses the lines on SEVERAL disabilities.

I STILL deal with emotions, and my son's been diagnosed for over 6 years now. It's not easy. I am finally at the point where I accept it, LOVE it (to some degree), and am just...informing people of what it really is, what's it's LIKE to have autism. If you're close with relatives, I'd buy them books on PDD, sensory integration dysfunction, or even print out stuff you find on the net and have them educate themselves. You really need a good "support staff". With children on the spectrum, it always EVOLVES and never really goes away, so when something seems hard at any one particular time, it does get easier and then present differently. It's a roller coaster of sorts, which is why you need a good support team. READ, READ, READ, as there is ALWAYS something new to learn on these children. New therapies, new models, new medications, new sensory techniques, etc.

Get in with a good speech therapist, one who knows ASDs, a good occupational therapist (preferably certified in sensory integration dysfunction), and perhaps a good behavioralist or behavioral therapist. A psychologist for social skill groups. Maybe look into SCERTS (my son's school is following this model - wonderful), RDI, ABA, Floortime, etc. Educate yourself about what the school system will provide, what they BY LAW have to provide.

It's overwhelming at first, but it gets better. Did I mention I wouldn't trade my son for the world??? :)

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