Special Children - Challenged Parents

The struggles and rewards of raising a child with a disability are explored in this interview with Robert A. Naseef, Psychologist, father of an autistic son and author of Special Children Challenged Parents.

Interview by Allison Martin

I had worked so hard and hoped so long for him to be normal. As I realized that was not to be, I struggled to make sense out of what was happening. I wanted him to have a life that matters, and I wanted the same for myself. It's always easier to tell a story in retrospect. We smooth out the rough edges in our mind.

As parents of children with special needs know all too well, the emotions involved are powerful, passionate, and often confusing. It feels like someone has died when you find out that your child has a lifelong disability or chronic illness. But the crib is not empty, and you love your child as much or more than life itself. So at first, the emotional response that we have doesn't seem to make any sense. But if we consider that the dream we had for our child and for ourselves has been shattered then the stages of grief make all the sense in the world. Still it is not easy, because there is no funeral or other ritual to bring closure. I have devoted two full chapters in my book to the grief process and I think readers will find these chapters helpful in understanding this complex internal process.

My advice for couples who are coping with a child with special needs:
Number 1. Take time for your relationship.
Number 2. Take time for your relationship.

It sounds obvious, but usually the marriage is the last thing that gets any special attention. I have devoted a chapter in my book to this issue because it is rarely if ever dealt with in the many books available about children with special needs. Research has shown time and again that couples who have a child with special needs face increased stress on their marriages. This seems obvious, and the good news is that fortunately the divorce rate is only slightly higher than in the general population.

The marriage is the hub of family life. The time you spend taking care of each other and your relationship will help your children and make your own life worth living.

When parents who have just received a diagnosis for their child is the hardest time for most people. Take some time to grieve and lick your wounds. Of course you want to do everything possible for your child, but you don't have to lie to yourself about how hard life can be after the diagnosis. There is also a sense of relief, because the anxiety that came with wondering what was wrong is over. It can be a confusing time as well.

Take time to enjoy your child just as she is. Sometimes we are working so hard to help our child that we lose this natural joy in the process.

The joy that parents experience with their child helps the child to grow and reinforces the parents' efforts. So follow your child's lead for at least several short periods of time each day. I recommend the approach called "floor time" which has been developed by child psychiatrist Stanley Greenspan.

I always recommend that people hook up with other parents in support groups or one-on-one or through the Internet. Support divides your sorrow. You will find a deep sense of comfort when you connect with other parents.

Robert A. Naseef is psychologist and the author of Special Children Challenged Parents exploring the struggles and rewards of raising a child with a disability.