Coming to Terms With What Is

Many parents have to come to terms with the child they have, rather than the one they were expecting in their dreams.  This is especially true for parents of children with learning disabilities, ADHD, or those on the autism spectrum.  The feelings engendered by this family situation are so complex.  There is denial and anger with your child for not doing his homework or “working harder” to have the academic success that perhaps you had.  After all, he seems smart (and probably is).  Then there is guilt about wishing that this young person were anyone but who he is.   There is sadness that this child does not make friends easily and is not invited to birthday parties.  There is anger at the unfairness. anger that other families do not have to go to IEP meetings, social skills groups, psychiatrist meetings, speech and language therapy, physical therapy.  It seems that the other families have children who excel at basketball and baseball and have no worries.  Of course, they might have worries, but not the ones that you have. As parents we feel the stigma when our children melt down in public places or cringe with fear before entering a party long after other children have outgrown those behaviors.   It is very hard to have a child with disabilities, especially of the invisible sort.

And yet there is no one who can better advocate for our children than ourselves.  Even when we feel the negative feelings about them, we still fight hard for them to get the services they need.   To be truly effective at this we need to accept the children we have.  We need to delight in their successes, even though these might be small events for “typical” children. We need to join them in their quirky interests, like the encyclopedic knowledge of baseball statistics or geography.  We need to be supportive of their struggles.

Yet few of us are saints.  How do we come to a place of acceptance and advocacy?  I think that group support is essential.  Sometimes you can find that in your own neighborhood.  Perhaps there are a few other parents who are not ashamed to admit that their children have special needs.  An occasional coffee or lunch can be very helpful to decrease the  sense of isolation and stigma, and it can be an excellent source of information.  You could learn which professionals have been most helpful to others.  School departments have PAC’s, Parent Advisory Councils, mandated by IDEA, the federal law for special education services.  In some school systems the PAC offers good information and a way to learn more about what is offered in your school system.  In addition, at the meetings you meet other parents.  There there are organizations like CHADD for parents of children with ADHD or AANE in the Boston area for parents of children on the autism spectrum.  And there are a wealth of online supports and listservs.

Once you accept your child, you can reach out and find that you are not alone.

Many of you probably know the essay, “Welcome to Holland,” by Emily Perl Kingsley (c. 1987).  She describes the process of coming to terms with raising a child with disabilities with great sensitivity.  Here is a link to it.    Can you see the windmills yet?


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