Surviving and Thriving in the Land of Special Needs

thriveBeing the parent of child with special needs is a stressful job. I am not telling you anything new.  Today I am thinking about the supports that you need in order to stay on the job being the loving parent and advocate that your child needs.

Many parents have been hurt and angered by things that (well-meaning) educators, neighbors and family have said.  Parents feel guilty that they have envy parents of neighbor children who seem to get their homework done and have time for ballet and sports.  Meanwhile you, the special needs parent, take your child to psychotherapy, occupational therapy, and a tutoring. No time for ballet or sports, even if you child enjoyed them.  Life is not fair.  Two major ways to fortify yourself are to find people with similar struggles and to take care of yourself.

Support Groups

Finding parents who have similar struggles is an essential part of coping with this complicated life.  It is affirming to learn that other parents deal with the same trials in the school system or the healthcare system.  If you become close to some parents you can share your dark feelings about wishing you had a neurotypical child, and likely you find out that you are not alone.  You have permission to be different, and the shame you might feel melts away.  You can also share the wonderful ways that you and your child cope and triumph with people who understand the struggle.

Where do you find these parents?  You might start with your local school system.  Under the federal law, IDEA, school systems are required to have a PAC or Parent Advisory Council.  This body offers a liaison between parents of children with special needs and the school administration.  PAC’s offer informative events. It’s a place where you can advocate for children and meet other like minded parents.

There are also organizations formed to offer online or in person support groups.  In my area two excellent ones are the Asperger’s Association of New England and the Federation for Children with Special Needs.  These organizations offer parents online and face to face ways to network with other parents.  They also offer excellent information about dealing with school and healthcare systems.  There are many other similar organizations.  For Attention Deficit Disorder there is CHADD which has online and local face to face parent groups.

Self Care

As you go from meetings to appointments for your child, don’t lose sight of taking care of yourself.  If your well is empty, you have nothing to give.  Consider the basics: get enough sleep, find ways to exercise, and take some time for fun.  Maybe you allow yourself to watch a trashy television show.  Maybe you find a way to fit a walk into your routine a few days a week.  There’s no reward for most worn out parent, so take care of yourself.  You will also be modeling good habits for your child.

Lastly, you might benefit from your own psychotherapy as you accompany your child on this journey.  It can be depression to confront your child’s disability.  Having your own psychotherapy can help you move from that sadness to acceptance and advocacy, and even pride and delight in your child’s accomplishments.

 

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Photo credit:  Tony Kelly on Flickr

 

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