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my son has down syndrame

My sone was born jan 2 2009. his name is james matthew.... he was about a month early.... he was 6pd 12oz 18in... so he was a good size for being premee... i found out there could be a chance for down syndrome, the day he was born.... they did a blood test.... we found out he was + for downs las wensday.... i need to know what i can look farward too.. i would like to here some stores and some advice.... thank you





dayna-marie

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Dayna-Marie

Asked by Dayna-Marie at 8:37 PM on Jan. 19, 2009 in Babies (0-12 months)

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Answers (5)
  • I found a group on CafeMom for moms of children with down syndrome.  Her's the link: http://www.cafemom.com/group/1152/

    ReneeK3

    Answer by ReneeK3 at 8:46 PM on Jan. 19, 2009

  • I know there are groups here for mom's with a child who has Downs Syndrome... here's one:
    http://www.cafemom.com/group/3312/

    You should also find a local support group in your town. Your doctor should be able to help you.
    kaycee14

    Answer by kaycee14 at 8:50 PM on Jan. 19, 2009

  • I am sure you already got some advice but mine is to register him for services with your state Developmental Disabilities Division. Children with Down's Syndrome are entitled to them. When he is older this could be beneficial to him and now. They can help you with early intervention programs and help you navigate the system. I work with adults with developmental disabilities and individuals with down syndrome can live long productive happy lives with the right supports in place. There will be some challenges ahead but I suggest you get as much help as possible. That's what it's there for.
    GraciesMommy25

    Answer by GraciesMommy25 at 9:14 PM on Jan. 19, 2009

  • Not sure what state you live in, but I lived in Pennsylvania for most of my life. Went to college to work with special needs children and their families. Some states have wonderful services for families. For instance, I had a job as a Therapeutic Staff Support worker (TSS, also refered to as a "wrap around"). I worked under a master level Behavior Specialist Consultant a/o a Mobile Therapist. The clients had treatment plans with goals we assisted the client and families with. I also did Family Based counseling, which was different....however when your child gets a little older, if there are services where you live you can get assistance and support from these kind of agencies......
    MissHeidi0304

    Answer by MissHeidi0304 at 9:22 PM on Jan. 19, 2009

  • ....your insurance company typically covers costs. And when you have a special needs child, at least in PA their insurance was always covered through the ACCESS card, any child has ithe right to be covered whether their parents can afford it or not. But special needs children will always be covered through the state, as far as I know. Now, I live in Alabama and do not work in the field anymore, because of personal reasons....we are only here temporarily with military and I didn't think it beneficial to pay to get lisense in this state to be here a short time until we return to PA. Your pediatrician and websites girls above listed can help you out tons!!!
    MissHeidi0304

    Answer by MissHeidi0304 at 9:26 PM on Jan. 19, 2009

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