Tuesday, May 17, 2011

Tips for parents of kids with disabilities

Marcus unloads the silverware from the dishwasher, learning responsibility at an early age.

I wrote this essay on Helium.com several years ago and wanted to share it here on my blog.

As an adoptive parent to several children with disabilities and as a pediatric occupational therapist, I would like to offer some tips to parents of children with disabilities. They are gleaned from my own successes and mistakes, as well as the various parenting styles I have observed in my work.
1. Don't be afraid of labels. No parent likes to have their child labeled, whether it is as the class clown, a troublemaker, autistic, or mentally retarded. One of my children suffered a severe traumatic brain injury as the result of abuse at an early age. Even as his cognitive deficits became more apparent over time, I insisted that the schools put a "Traumatic Brain Injury" special education code on him, not a "mentally retarded" code. When he graduated from the public schools, I came to regret that decision. As an adult, there are virtually no services for a brain injured person, while there is a vast array of programs and services for the mentally retarded/developmentally delayed. You know your child is much more than a label, but try to accept the label as a ticket to better services for your child.
2. Be skeptical of miracle "cures." Having been in this professional field for almost 30 years, I have seen many miracle cures come and go. There was patterning, neural pacemakers, rhizotomy, etc. Some people exhausted their financial resources or sacrificed their family life for what turned out to be false promises.
3. Walk the fine line between making your child feel special and making him self-centered. One of my children has severe cerebral palsy, but normal intelligence. I quickly saw that most folks assumed she was mentally delayed and they tended to ignore her or talk to her as if she were a baby. So I went out of my way to include her in social situations, brag about her accomplishments, and, in short, make her the center of attention. My strategy backfired, in that she became self-absorbed, always expecting to be the center of attention. Yes, your child is special, but no more special than every other child.
4. Let your child be a child. You may feel that, with all the therapy, medical appointments, and educational needs your child has, you have to make every minute count. But your child has other needs: to play, to develop his own interests, make friends, be goofy, daydream.
5. Encourage your child to become independent. It is often easier, quicker, or less messy to do things for your child, but you won't be around forever. Let your child develop that sense of accomplishment and competence that we all need. And if your child does need help, teach him to ask for it in a gracious way.
6. Fight for your child's rights, but teach him responsibility at the same time. If you insist that the school buy your child an expensive notebook computer to do his school and homework on, it is important that he understand that he has to take care of it and that you do expect him to complete his assignments.
7. Help your child deal with uncomfortable social situations in a positive way. Fortunately, this is a much easier task than it was 20 or so years ago when I began rearing my children. Thanks to the push for mainstreaming, most children today have had some experience in being around and relating to peers with disabilities. But your child may still encounter stares or remarks in public. Maybe it makes you mad or uncomfortable, but try to remind yourself that usually the person who is staring intends no harm, but is only curious. Often just smiling and saying hello diffuses the situation. I often think of the time I was at Six Flags with my son who had Tourette's syndrome, with many facial tics. We were in the line for a ride, and kept passing the same kid each time the line snaked through the aisles. The other kid kept staring and staring. I began to feel anxious and tried to stand between the kid and my son, so as to block his view. Finally my son leaned over to whisper in my ear, "See that boy over there? He's got an eye problem...he keeps staring!" What insight...my son was able to see the situation as the boy's problem, not his!
8. And lastly, take care of yourself! Everyone has a bad day...forgive yourself for your impatience, grief, or mistakes. Try to get your rest, find support, make friends, pursue your own interests. Don't let yourself get so drained that you have nothing to offer your child.
I hope these tips will be helpful. I like to remind myself that there are lots of different styles of parenting, but most parents are doing their best for their children.