"Hold On To The Hope"
As a working mother with three young children, I often feel conflicted by the time I don't get to spend with my 4, 6 and 10 year old. As the holidays approach, what I most look forward to is not only spending some time with them but also seeing their faces light up on Christmas morning, as they look with amazement at the presents Santa has left under the tree. They are very lucky indeed. And on Christmas, I'm always reminded of just how lucky I am as well.
Christmas Day is especially meaningful for me because of something my middle son Jay did on that day four years ago, when he was 16 months old. He took his first step. Many parents remember the day their child first walked. I do especially -- because it was one month after doctors confirmed what we feared: my son is autistic.
Jay is a wonderfully sweet little boy. (We named him for Katie's husband, and he has a lot of that Jay's spark and sparkle!) He doesn't have a single mean bone in his body. His eyes are big and blue. His smile is infectious. He's a wonderful reader. And in the past year, he has started to talk. His progress constantly amazes us. He also "works" harder than most people I know! He gets on a bus to school every day at 7:15 am and doesn't get home most days until 5:30 pm. Saturdays he has many therapy sessions as well. Sunday is finally his day of rest!
When I started down this road as the mother of an autistic child, most of my family and friends knew very little about the disease. Over the past few years, awareness has thankfully been raised. Now, I have a renewed hope --not only for my child but one day for the children of my children.
The week before last, the U.S. Congress passed the Combating Autism Act of 2006. It is considered by some to be the most comprehensive piece of single-disease legislation ever passed by the Congress. For the families of the estimated 1.5 million autistic individuals living in this country, this legislation not only provides $924 million for research, education and treatment over the next five years, but it also gives these families something that is often in short supply: hope.
Autism is a neurological disorder that causes difficulties with communication and social interaction. It is often accompanied by extreme behavioral challenges. The Centers for Disease Control estimates that today, 1 in every 166 children born will be diagnosed with an autism spectrum disorder. There is a broad range of disabilities and abilities of children and adults living with this. The cause and cure remain unknown. A diagnosis of autism often causes pain, unpredictability and hardship on entire families.
Many families take for granted being able to go to the movies, going to a birthday party, going to the grocery store. Nightly concerns often center around getting homework done or playing after school activities or picking up children from play dates at friends homes. But families affected by autism worry about such things as… what school will take their child? Will their child ever be able to have just afriend, or even be able to live on his own? Will their child ever be able to say "mommy" or to tell someone when something hurts them? Will they ever learn how to go to the bathroom-–not in a diaper? Will they ever have a day when they don't spend time hitting their head against a wall or screaming uncontrollably for no apparent reason? Will their child ever be able to have a conversation with a stranger they meet? And while many families affected by autism are fortunate to see some progress, progress is very very slow. Families have to fight incredibly hard-- not only to help their child to attain every single achievement, but also just to get the child desperately needed help. Everything in life becomes a struggle. And that can cause anyone to lose hope.
Not only is autism an emotional, physical and financial strain on families, it is also a tremendous financial responsibility on communities and on school districts. Adequately treating autism is very costly…to families most especially, but also to our society.
At a time when so many of us complain that so much is wrong in Washington, this legislation just passed is a step toward something very right. By acknowledging the problem, by putting federal dollars toward research and treatment, not only can families like mine have a reason to hope, but we can all hope for a day when autism is better understood and properly treated—we can all hope it becomes a disease with a cure.
And in the meantime, as you spend time with your family and friends over the holidays -- as children undoubtedly eat too many sweets and get into things they shouldn't -- be thankful that they are.
And for those of us who only dream of that, hold on to the hope.