While the legislature struggles with the budget, I can't help but wonder what the future holds for my two sons who have been diagnosed with autism. Adult programs, like Keystone Autism Services' Adult Community Autism Program (ACAP) have just gotten off the ground for a new generation of over-21 persons with autism, yet funding may be all but eliminated for this program. Families fight so hard for years and years to finally see the fruition of beneficial programs for their children, only to find that such programs hang by a thread during annual budget crises. In the end, our children suffer and the treatment and therapies we, as parents, have spent on our children, become less effective if they are not reinforced over time, as they age.
When you look at my sons' beautiful eyes, their perfect skin and complexion, their build and smiles, you can't help but wonder what they will be like grown up…who they will marry…what their children will look like. My boys are SO beautiful. They are so typical-looking. Yet, behind their beauty, I know, that they may never experience a first date, or a marriage or maybe even a job because my two boys have autism.
Jack (12 years old) and Jimmy (age 8) were two of the youngest children in the Harrisburg area diagnosed on the autism spectrum. Both were just 1 year old. My husband and I were given high hopes and good prognoses because early intervention would surely “straighten them out.” We started on a path of occupational therapists, speech therapists, physical therapists, developmental therapists, doctors and counselors, which required us to provide the boys each with 20-30 hours of services and therapies a week, either in home or at a therapist's office.
We have tried all sorts of therapies. In fact, according to a University of Pennsylvania survey in which we participated, we were in the top 3 percentile of families who tried over 90% of the therapies available to autistic children. We tried homeopathic remedies, allopathic conventional routes and even psychics to guide the way. We read books. We didn't just reference the books, we made appointments with the authors of those books. And, we are not alone as parents making these efforts!
Many parents spend years struggling to find the right schools, the right housing, the right therapies, the right programs, the right doctors, the right medicines, etc. for treating their children. To see those programs continue beyond the age of 21 in Pennsylvania is every parent's hope and dream.
As such, we spent countless hours of our time focused on treating our boys. Hours spent in therapy. Hours spent trying to determine their needs and wants. Hours spent just trying to communicate with each of them in two uniquely different ways. Our 12-year old still has absolutely no speech; our 8-year old has atypical speech patterns and will require speech therapy for many years to come.
Speech aside, we still have spent hours of time just trying to get the boys to learn basic, everyday, life and safety skills. It's still a challenge to keep them from running out of the house and into traffic. Both boys struggle with learning common routine self-care tasks, such as dressing, toileting, feeding, bathing and brushing teeth. Being independent is a distant dream for us.
In addition, we have invested a great deal money in our two children. We stopped counting at the quarter of a million mark. This is money spent on therapies that were not covered by our families' medical insurance. You see, autism has often been regarded as a behavioral disorder that is willed by the child, rather than as a treatable illness.
I know that I am not the only parent who has made these types of investments for their children. Every parent does what he or she can for the benefit of their child in need. Investments come in all shapes and sizes: time, emotion, hope and money, to name a few. Many parents spend years struggling to find the right schools, the right housing, the right therapies, the right programs, the right doctors, the right medicines, etc. for treating their children. To see those programs continue beyond the age of 21 in Pennsylvania is every parent's hope and dream. Knowing that their child will continue to thrive and maintain a level of skill that had flourished and developed throughout childhood and into adulthood is every parent's dream, whether that child is typical or not. I hope, though, that programs, like ACAP, will be available for my children as they near adulthood. For without such programs, my sons' chance for a future is lost.