Calling All PDD-NOS Parents!

Updated on November 04, 2012
A.E. asks from Saint Paul, MN
7 answers

Hello, friends. So my 4-year-old boy was recently diagnosed w/PDD-NOS by a pediatric neuropsychologist. He's very bright, but what I like to call "lovably quirky" :), and I have high hopes that he will be able to function as a typically developing child down the road... But how far down the road is yet to be seen. He has his up and down days, and on those frustrating days that his behavior is particularly hard to manage, I find myself wishing I could consult with other parents who can relate. (Although, I'm aware that PDD-NOS by definition covers a broad range of characteristics and no two children are alike.) Are there any support groups out there for parents of kids experiencing PDD challenges? Specifically in the "Not Otherwise Specified" category? I live in the Twin Cities (MN), but I'm more than happy to have a couple of penpals around the country. :)

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J.W.

answers from St. Louis on

I stay away from support groups, I know that sounds awful but they bring me down.

I apparently take a different path when it comes to my kids. Sitting in a group telling me I should be more a victim makes me want to go postal.

Andy's doctor always leaves the NOS off because all it is is a catch all. Okay his full telling is basically PDD NOS is the basket kids are thrown in where they do not fit the markers for Aspergers or full out Autism but they just aren't normal enough to be considered on the ADD side of the spectrum.

Maybe this is easier for me because all of my family is on the spectrum. The only difference between Andy and I is we think alike but I usually have the sense not to articulate what I am thinking.

Feel free to message me I will tell you what I know. Andy is 12 and I wouldn't call him normal but if you use the rest of the family as the unit of measure he is close. :)

R.L.

answers from Minneapolis on

Hi A., New to the site I to have a child with PDD/NOS and have so much input as well as questions the same. I am juggling so many responsibilities throughout the day and many times feel overwhelmed with what I would consider my son's homework load he brings home each night. I feel as though I am doing the days work of the teacher unbelievable.I have been adamant about obtaining additional services through the county to assist my son with his learning disabilities by providing an experienced tutor who can work one on one with Jaxx to bring him up to speed where he needs to be which is at a 5th grade level not a 1st grade level.

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S.W.

answers from Minneapolis on

Have you been in touch with the Autism Society of MN? They have resources for kids and adults on all points of the Autism spectrum.

http://www.ausm.org/

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S.B.

answers from Denver on

hi, A.,
I have a 16 yr old daughter with Asperger's Syndrome, Nonverbal Learning Disability, Sensory Processing Disorder and Anxiety Disorder. Our best source of support has been our statewide Parent to Parent agency, a network of parents of kids with special needs for mutual support and sharing info. Here are two organizations in Minnesota to help you find local support. best of luck, S.

– Organizations for Parents
State: Minnesota
PACER Center, Inc.
8161 Normandale Boulevard
Minneapolis , MN , 55437-1044
###-###-####
###-###-#### (TTY)
(888) 248-0822(in MN)
____@____.com

Arc Northland
201 Ordean Building
424 W. Superior Street
Duluth , MN , 55802
###-###-####
(800) 317-6475
____@____.com
http://www.pacer.org

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H.D.

answers from Dallas on

My son was originally diagnosed as PDD-NOS at Fraser when he was 2 almost 3. Two years later we had him reevaluted at Fraser and they bumped his diagnosis up to a classic Autism diagnosis because of speech and social skills. He's very much high functioning though and all the biomed stuff I've been trying has been helping a ton. When I was living in MN I used to attend the Autism Society meetings. Some were free, others you had to pay for (i.e. the potty training class) but if you were a member the price was usually cheaper for paying classes.

I now live in TX and belong to a couple of TX support groups, one through FB and the other through the county Autism Society in my area on Yahoo Groups. I suggest searching "Minnesota Autism" on FB and see what groups pop us in your area:)

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M.M.

answers from Minneapolis on

I would check in with the Minnesota Autsism Society. They are locater right here in St. Paul and have all types of groups, that they break down into the three different categories. They are amazing and the parents too. There are a ton of support groups parents lead that are orginated through there. Workshop and conferences will allow you to network and even set up some "playdates" of your own. Have you connecteted with other parents in your son's ECSE class. I am assuming if he is four, you have him in Early Childhood Special Ed. Connect with your local ECFE; there is always at least one other parent there with a child on the Spectrum! Good luck and know the early years will pass quickly.

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N.C.

answers from Minneapolis on

Have you looked into meetup.com? They have social groups and support groups sorted by interests. You might finds something on there. Good luck.

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