The joys of special needs children

Don Hammonds / Nov. 26, 2008

"Puh-ple!"

That word came out loud and clear from my 2-year-old the other day; Aidan and I were absolutely overjoyed.

You see, Aidan is one of our four special needs children, and from the day that my partner Joseph and I brought him home from the hospital, he has had special challenges to overcome.

Not long before this much-awaited outburst from Aidan, he finally began to respond to music with dancing. We were in the Whole Foods store here, waiting in line when the song "Save the Last Dance For Me" blared on the radio. He perked up and started rocking, and I joined in, and there we were, dancing in line at the store to the laughter and smiles of people around us.

It was a wondrous, happy thing for both of us. Joey and I had been trying to get him to respond to music and dancing since he came home for the first time, because we know how important music, stimulation, rhythm and touch are to infants and toddlers. Besides, music and dancing are an important part of our lives and we wanted Aidan to be able to enjoy both.

But every time we tried, he'd get furious with us, and one time he gave a loud yowl and whacked me. So that little moment in the store was one that I'll cherish forever.

When you have a child who has special needs, every small accomplishment or victory is one to be celebrated and remembered.

Thankfully, except for his speech delay and some vision problems, Aidan's a normal, happy, gorgeous kid. His brown eyes and his incredibly straight, thick strawberry blond hair and brown eyes make him look like Andy Warhol. When he gets his glasses, the resemblance will be even more pronounced.

But close monitoring will continue. I know that some of my child's behaviors suggest he may have some issues down the line. Probably he will be just fine - but you never know.

We have a team of doctors and nurses in place who carefully monitor our children's development, and if anything is noticed, we instantly seek specialized services, including many that are offered with in-home care and therapy.

There's not a moment that goes by when I'm not thankful and grateful that I live in Pittsburgh. The array of services and programs in this town are nothing short of stunning.

And Children's Hospital of Pittsburgh? I'm not sure where we'd be without them. One of our other children has a seizure disorder, and we've been there so often that we are now on first-name basis with so many of the people there.

When my 4-year-old was a tiny baby and had a seizure, rather than making him sleep alone in his bed, they allowed him to snuggle up next to me and sleep at night on one of the chairs that converted into a bed. They knew how important it was for him to have my comforting, my touch and my soft singing to him as he slept - and how much I needed to hold him at the time.

And I have to say something about the hospital's Family Care Connections program. They've provided wonderful in-home services, monitoring, special activities, training for parents, and for our 4-year-old, a Montessori preschool. My son's development has skyrocketed since being in their program.

There are things that I've learned from raising four special needs children. Some of these may prove helpful to others:

First, be prepared to fight - and fight hard for your child. It took us many meetings, days worth of research on curriculum and heaven knows what else to get an individual education plan written for our 12-year-old. And he's now a straight A student looking to go into law someday.

We've spent many a night on the Internet doing research, finding tips, programs, books and all kinds of tools for our children.

Often, special medications are needed, and not all pharmacies have them. Then there are times that insurance companies don't want to cooperate. Life has become one battle after another.

Look for support groups that can help you. You can't do it alone. And commiserating with others who are going through what you are experiencing can help you, reassure you, and make you realize you're not crazy for feeling some of the things that you do.

Next, try to find some agency or service that can walk you through the maze of programs, therapies and offerings that are here in Pittsburgh. If you don't know where to start, call a hospital social worker or any of the local adoption agencies to get started.

But perhaps most important, be good to yourself - and to your spouse if you have one. The tensions and fatigue that build up can really damage a relationship if you aren't careful.

We have a baby-sitting cooperative, so Saturday nights are reserved for Joey and me. Hugs, snuggling on the couch after the kids go to bed, and just being together are so terribly important to any relationship, but especially one in which you are caring for children with special needs.

All in all, though, I wouldn't trade my life with my incredible kids for anything in the world. I love them dearly and deeply, and they all know that daddy's here for them when they need me.