Strength in Community

Last week I wrote about the complicated feelings that parents have when their child is diagnosed with a learning disability.  While these feelings are all a normal part of coping with a special needs child in your family, they can interfere with your well being and your ability to advocate for your child unless you find ways to support and take care of yourself.

There is nothing like community to heal the shame, sadness, fear and anger that parents feel in this situation.  If it is painful for you to talk to parents of “typical” kids, find other parents whose children have special needs and cultivate relationships with them.  Below I’ll list some useful organizations.  At these meetings there is no shame in having a child with special needs because everyone is in the same boat.  Before you know it, you’ll be meeting with others for coffee or calling each other on the phone to share the latest outrageous story (sad or funny, or both).

When you become part of a community of this sort you experience many benefits.  You’ll find others who are more experienced and can share tips that have been useful to them.  You will find out about services in the community or school system.  Your fear about the future might decrease because you might learn about kids like yours who have had successful outcomes.  In time you will be the one to offer useful information to a newcomer, and this also feels good.  There is no doubt that community is healing.  Where can you find it?

  1. Under IDEA, the federal law that mandates special education, all school systems have PAC’s or Parent Advisory Councils.  These meetings can inform you about your rights and the services in your school system.
  2. In my area the Asperger Association of New England offers a wealth of educational and support services for parents and children.  Their website, www.AANE.org, even offers a listserv useful to people outside the immediate area.
  3. Another organization that offers very useful information is the Federation for Children with Special Needs (www.fcsn.org).  Within this organization parents can find useful information, support, and opportunities to volunteer and give back.  FCSN even has webinars on their page.

These are ways you can find and develop community that might help you diminish your shame, sadness, fear and anger.

Next, let’s think about how you see your child and where her strengths might offer community for her and you.  When you first get a diagnosis, you might only see her shortcomings.  But it is likely that there is much more to her than that.  Try to recover a more full understanding of who she is.    Does she have an encyclopedic knowledge of some topic?  I knew one boy who had nonverbal learning disability whose knowledge of geography took him to the state level competition in the National Geographic Geography Bee.  This gave him a little social capital in middle school.

Does she do well at individual sports rather than team sports?  Many children who cannot manage the social and physical complexity of team sports can excel at track or swimming where the main competition is against oneself.  I knew another boy who excelled on a swim team.  He enjoyed the camaraderie and the exercise helped manage his weight and his anxiety.

Can she play a musical instrument?  How about a sense or humor? What about art?  Theatre can be a helpful way for some kids with Asperger Syndrome to try out different ways of being. Finding these areas of competence and nurturing them will be good for your child and you.  It gives you both something to feel proud of when school is tough.  Activities that draw on your child’s strengths can also give her a social network in which she can feel strong.

I would be interested to hear how others have coped with having an “atypical” child.

 

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Photo Credit: Melissa Wall on Flickr

Comments

4 Responses to “Strength in Community”
  1. Hi Dr. Carolyn – The suggestion to seek out and join with others in community is a wonderful idea. I wonder if there are some online communities for parents with special needs children that they can access during their off hours to make friends and share concerns & ideas. Peer support is so important!

  2. JoAnn Jordan says:

    As one who lives rural, I echo Kathy’s comment. would encourage those who lack a local support network look for one online. There are some amazing resources for parents and educators to be found. The difficult part is the first step – reaching out.

  3. dr.cstone says:

    Dear Kathy,
    I do think there are online communities. Sounds like I should research these and post links on my website. Thanks for the thought!
    Carolyn

  4. dr.cstone says:

    Dear JoAnn,
    You and Kathy raise a good point. Often it’s easier to reach out online than in person. And as you say, in rural areas it is even more needed.
    Thanks,
    Carolyn