This is the third column I have written to you. The first was three years ago on the event of your birth. Since that time, you have become one of the most beautiful and gentle children I have ever seen. The second column was last year when I explained that you had been diagnosed with “high functioning autism” and, although you are an incredibly happy little boy, you would need a good deal of special help.
At that time you had symptoms typical of autism – no speech and many rigid behaviors, including head-banging. When you were diagnosed, we learned that in your state of Maryland, the county Office of Infants and Toddlers was the agency to deal with for your care. By federal mandate, every county is responsible for providing appropriate services to disabled children until age 3. And we were told that these services are supposed to be reasonably calculated to afford meaningful progress toward independence and self-sufficiency.
We knew the county didn’t have unlimited resources, and we were concerned that it might not provide you with all you needed. So your parents hired Mary Hepple, an educational consultant and advocate, to help ensure you received the necessary care. After evaluations, the county decided you needed speech therapy twice a week and occupational and behavioral therapy each once a week. Your doctor, though, felt you needed speech therapy three times a week. We decided to follow the doctor’s orders and supplement your therapies with a weekly private speech therapist. Fortunately, we were able to pay her $90-an-hour fee.
In the first six months, you learned a good deal of sign language and were finally able to communicate with the world. Then, slowly, you began to make sounds, which turned into your effort at speech.
So now, you no longer rely on sign language, but we have discovered another problem. You have something called apraxia – a pretty common speech impediment in autistic children. It means your brain and your mouth are not well coordinated and you have difficulty forming sounds into words.
Although your parents can understand some of what you are trying to say, even I have difficulty understanding most of what you are saying. Nevertheless, you have made remarkable progress after one year of these intensive therapies. Your mother even told me that if you could continue with this level of therapy, she believed that in several years you might not need any therapy at all!
But things don’t continue the way we would like. Once you are 3 years old, in most states, the educational system picks up responsibility for your care. Then, educators and speech pathologists develop an Individualized Educational Plan, a very detailed description of what the school system will provide in the coming year.
Here’s the problem, Sam: You and other children with special needs are not the school system’s only concern. Most public school districts have limited resources. Many get most of their money from the state, and most states are having great financial problems now. They also get money from their local communities through property taxes. Lately, many communities have been voting against school budget increases. And, special education can be very expensive. So I was concerned about how objective the school district could be when it evaluated you.
I spoke with Dennis McAndrews, an attorney in Wayne, Pa., who represents students with disabilities and their families. I asked him if we should be concerned that you would not get the services you needed. “Any time there’s a budgetary constraint, it frequently affects special education,” he said. “The great irony is that usually the least cost-effective place to cut is special education. That’s because there are multiple federal laws protecting kids with disabilities to obtain an appropriate education program; and if you cut those programs, you are then actually inviting due process hearings which require districts to pay the hearing officers, to pay their own attorneys, to pay overtime for substitutes to come in to cover teachers’ classes. And, if they lose, to pay counsel fees and expert witness costs to the opposing side.”
Nevertheless, special education is often cut when money is tight. Well, Sam, now it seems as though our fears may come true. When your parents first met with the school team, they felt you were doing so well that they changed your diagnosis and said you didn’t need occupational and behavioral therapies at all and only needed speech therapy once a week.
Of course, you will be tested, but now I am concerned about whether the test results will be consistent with your needs or their budget.
And I am afraid we will need not just Mary Hepple, but independent testing and an attorney to make sure you get the services you need. And, Sam, these issues don’t just affect children with autism; they affect all children classified as physically, emotionally or developmentally disabled – hundreds of thousands of children who need special attention from schools. Children who, if they received that attention, could develop into happy, healthy citizens.
I asked your mother what it was like to be in this position, and she responded:
“This is a difficult time for all parents. The world we usually live in with Sam is centered on praise, and watching how well he is growing. But right now we have to fight with people to tell them how handicapped our child is – that’s our job. In that room with those people, we have to talk only about his deficiencies and lack of progress, his ongoing need for special attention – otherwise, Sam won’t get any help! It’s not only emotional, but a huge sticking point because that truly goes against our grain as parents. We really want to say: ‘Sam is perfect. He’s beautiful and funny and smart and he needs help! Look at him – how dare you deny him something we all know he needs? Please help him be the best Sam he can be.’ “