A Special Need & A Special Kid

Riley. He is my middle son and he is severely and profoundly autistic. Riley is 11 years old, non-verbal for the most part, and he just graduated from pull-up diapers less than a year ago. You'll never find a more loving and pure joyous child than Riley. He certainly has a challenging road ahead of him in life. But just as his name implies, he will give life his most valiant attempt.

Finding out his diagnosis at 24 months of age was an extremely traumatic event in our family, one that I wouldn't want any family to face, let alone my family. All the child's potential that you thought would over flow from a giant bucket of life, suddenly trickles down to a few drops in the bucket, a mere glimmer of the child's dreams that were once your dreams for that child.

The trail of specialists and therapies and special schools and special doctors, etc. seems endless. All that you want to be right for Riley is all that you simply cannot physically provide for him- like a 'normal' childhood, friends, or even play things- and the list goes on and on. The 'specialists' range from knowledgeable to incompetent, and you must be constantly vigilant to see that his care providers are actually doing their jobs and make sure that Riley's needs are being met.

At first, the specialists' job is make sure that you do not blame yourself for Riley's condition- for there is no known cause for autism. That is hardly any consolation. As his mother, I used to constantly rewind and play my pregnancy and delivery, wondering if the tiniest single act could have made a difference- but eventually you have to give up on that path because it is not going to change the present road, or the future.

Secondly, the specialists want to ease your anxiety by establishing "lower expectations" for your special needs child. I used to joke about lowering my expectations for Riley by saying I had already lowered expectations for Riley. Instead of going to Harvard or Yale, I expected that Riley would attend Drake University here in Des Moines, Iowa. That usually got a big laugh, and served to break the ice on a serious situation. However true or false that expectation is has yet to come to pass.

Right now, though, Riley will be turning 12 years old and he is currently still in elementary school. His chronological school age is 5Th grade, but that has little to do with his academic status. His school teachers and other school specialists claim they don't like to "pigeon hole" special needs children by 'keeping' them at any certain level while they all have differing abilities at different age levels. So the school officials have developed what they call an IEP. This stands for Individual Education Plan, and that is supposed to mean that Riley's education is strictly tailor made to fit Riley, and therefore give him the best possible education without 'pigeon holing'.

The IEP is a nice try for educators, but the actual plan has a lot left to be desired. Basically, the IEP is watered down to be less than homogenized in academic nature, and is nothing more than a glorified baby-sitting plan that incorporates play and learn styling. I still cannot believe the fact that Riley has been attending this public school in Special Education for the past ten years and has yet to receive one single, solitary text book. They tell me that Riley learns better without any books- which I find to be startling and crazy. So I provide Riley with all the books and reading materials that my house will hold for him. He loves to page through books and magazines of all kinds. Riley may be non-verbal for the most part, but I truly believe he can read- he just can't tell us. Repetition is his game-he loves to watch, do, and read things over and over again. That is Riley's entertainment. That is autism.

The specialists also ordained that Riley is to have a certain amount of speech therapy, along with a certain amount of occupational therapy every week, which is more than the public schools can provide. So to fill the rest of the prescription for speech and o.t., we have to utilize another support for Riley by using ChildServe, which is a NPO set up to provide what the public schools cannot provide with the various therapies and services. Luckily, until lately, ChildServe was also willing to do sight words with Riley, a major stepping stone to teach Riley to read monosyllable words by sight. This worked great for the past 1 1/2 years. The public school just started to utilize the single sight words this year, and it has made the reading transition for Riley much easier overall this year in school.

Just like with my two other sons, I have never missed a parent-teacher conference at school. Riley had his conference last week on Thursday. I always go to Riley's conference with some trepidation because I know that it is not going to be the most optimistic report in the world, and for me- a lot of sad over tones.

This time, though, the teacher conference was a little different in that there were more people than usual at Riley's conference. This could have been good, or it could have been bad news. There are always more school reps and specialists involved in Riley's education than my other two sons- I guess that's what makes it 'Special Education'. There are the usual suspects there; the teacher, the class room assistants, speech therapist, the principal, the school nurse, and Riley's case worker, for example.

I had already had a pretty bad week, defined by a lot of bad situations that weren't connected to Riley's education at all, so I viewed these strangers with some surprise and some suspicion. We all sat at the ridiculously little tables that are meant for children, not adults, to begin the conference. Once the introductions were passed around, I felt a little more at ease.

Apparently, when Riley turns 12, he will no longer be able to attend the elementary school for Special Education, but will automatically be moved up to the middle/high school for Special Education, which is located just across the parking lot from his elementary school, so no bus changes or anything like that, which was a relief. There was the Transition Team present to make sure Riley's transition from one building to the other would go as smoothly as possible. Plus, I got to meet his new teachers and other specialists that the public school Special Ed program thought was appropriate for Riley to grow into adulthood, and try to be a 'productive member of society' ( I hate that phrase).

As we sat there and discussed Riley's IEP, and the seemingly ridiculous goals and milestones (compared to 'normal' academia), I began to feel like I was having an out-of-body experience. That surreal feeling of being there in the room, and yet not really there at all. I was immediately filled with a deep abyss of sadness for the realization of Riley's sum total of life expectancy was sooo shallow. They talked on nonchalantly, as if the dummied-down version of school, middle and high school, no less, was a simple fact of life - which, of course, it is for Special Education.

I couldn't help feeling the sadness deepening, and the hole in my soul widening as they spoke of the new expectations and non-academic goals that would be expected of Riley in his years to come at Ruby Van Meter School. He could attend the high school until he was 21, if I wanted him to, under the guidelines of the MR Waiver.

I sat there in a moment of self-pity, and wallowed there for a while, thinking all the time of all the parents, most of my friends and family that never, ever had to listen to school officials tell them 8 years in advance what their son or daughter would be able to accomplish, and how absurd this entire situation had become. Yet I sat there and listened attentively and acknowledged the absurdity in a totally complacent way. What else could I do?

On the way home, I held Riley's hand in mine. My sadness spilled over into tears running down my cheeks with no sound emitting the sorrow. Riley didn't know I was crying until he looked at me, and then he lightly brushed my tears away on his fingers, and began to sprinkle them like holy water in the car. I love Riley so much, and I don't want to settle for the preordained minimal accomplishments set forth by who-knows-who. But what can I do?

I have watched other parents of special needs children who cannot accept their son or daughter's disability, and continue to ignore the fact that their child will never be normal. I have felt sorry for these parents because I know they have chosen the harder path of denial. It is so much better for all concerned parties to just accept what cards are dealt to you as parents, and try to make the best of it.

Even with this kernel of sanity to cling to, I can't quiet the tiny voice inside me that keeps saying that Riley's greatness is yet to come, and don't settle for the mediocre. Riley deserves more than that. He deserves so much more than that. I will give Riley all the tools and love he needs to become the greatest Riley can be. That is why God chose me to be the special parent of a special child. God doesn't give us more than we can handle.

20/20 Here's To Overcoming The 'Minimum Requirements'

Imbroglio