Those Crazy Special Ed Parents!

I love the way our school administrators try to play us off! Since our children have special needs we are automatically assumed to be insane for trying to make the school district comply with special education laws. When my son was 3, before autism invaded our lives, I was viewed as a typical parent. I would assume that was because I was raising a "typical" child.

My son was a beautiful little boy that was always happy and silly. He loved to make people smile! I could take him to any restaurant and he was always the most well behaved child there. He had great manners and even ate his veggies! I was able to work from home so we spent a great deal of time together. Life was wonderful and I was a "typical mom" enjoying every minute of it!

Realizing that a good education was one of the most important things we could give a child, I enrolled my son in pre-school at the age of three. Although he seemed pretty bright, I wanted him to have that social piece in place by Kindergarten. He made friends and even enjoyed playdates with his little pre-school buddies. My son was off to a good start in life, and then suddenly -- boom -- all hell broke loose!

At the age of three and a half, my son began to develop sensory integration issues. He could no longer play in the sandbox and could not walk barefoot in the grass. His pre-school teacher noticed that he would hold his hands over his ears when the children sang together. If the fire alarm sounded, he quickly went under a desk and screamed uncontrollably. He stopped eating many of the fruits and veggies that he once loved. The texture of certain foods became intolerable. By four, I was dealing with a child that was losing skills on a regular basis. His social skills began to regress, he developed irrational fears and his behavior suddenly turned wretched!

My first thought was, I must be doing something wrong. I immediately consulted the parenting books, only to learn that I wasn't such a horrible parent and I had apparently been doing everything right. I spoke with our family doctor and consulted with a child therapist. Eventually, we took my son for a neurological consult. After five grueling hours with a neuro team, I heard the first mention of the word "autism" to describe my son.

The word didn't shock me, mainly because I thought the neuropsychologist that mentioned this word was off his rocker! Don't get me wrong, I liked this doctor. He seemed intelligent, was well respected in his field and certainly had an ability to connect with children; but if he thought my son had autism -- well, he was just wrong! (or so I thought.)

Yes, my son was losing skills, both social and communication. He was becoming obsessed with airplanes and had memorized the flight patterns over our home. He stopped "playing" with his toys and instead began lining them up in a particular order. He was displaying sensory dysfunction. He flaked out over the sound of a lawn mower, a blow dryer and even the vacuum cleaner. He was unable to eat the foods he once loved due to texture, temperature and taste issues. His bath suddenly had to be a certain temperature (I actually had to buy a tub thermometer!) He could not wear many of the clothes he had because the material bothered his skin or the tags were too annoying. OK, maybe he was becoming a picky child, but he was not an autistic child!

Yes, my son would sit for hours staring at the wall or twirling an object and yes, he was retreating into his own little world. Sometimes I would call his name 6 or 8 times without getting any response at all. He began focusing on odd things like doorstops and light switches. He repeated TV commercials verbatim and could have an entire conversation with you using only lines from movies. He may be a little odd, but still he was not an autistic child!

Yes, he suddenly could not grasp emotions. He did not seem to recognize or care about the feelings of others. Even his own feelings were unrecognizable to him. All negative feelings (sadness, disappointment, fear) were being displayed as anger. That anger would eventually erupt into a violent rage! His behavior had taken a sharp turn for the worse, but still he was not an autistic child!

I think when I heard the word "autism" I believed it meant some form of mental retardation. I knew my son was intelligent -- he had an extensive vocabulary and was already able to add and subtract whole numbers. He had hit every developmental milestone on time. He couldn't possibly have autism!

I went through his baby book and health records and saw no signs of developmental issues. I viewed video tapes of him playing, laughing and smiling. I began looking at pictures from the time he was a baby until he hit the fun toddler stage. Then I realized something -- his eyes were not the same. He had this blank or distant stare in the more recent photos. That spark was gone!

But "autism" -- no way! My son could not possibly have autism! It wasn't until I began researching autism, which was primarily to prove this doctor wrong -- that I realized my son had an autistic disorder. I began going down the list and realized that my son was displaying every feature of the disorder.

My son was not the same child he was before. Something inside of him had changed. But I was still the same parent. I was a very typical mom, dealing with an atypical child.

To all of you who think we are "crazy parents" -- it's funny how we weren't viewed as such when we were raising "normal" children. It's funny how as soon as our child required something more from the school district, like access to support services or maybe a little therapy -- we were suddenly "crazy parents."

It's funny how when our children did not receive the services that you were legally required to provide and we had to become stronger advocates for our kids, that we were now labeled as "red light parents." What's really sad is that when a child with a neurological disorder has a need that is not being met, it is usually displayed in their behavior. It is at that point that our children get labeled as "bad kids" and we are labeled as moms and dads with "poor parenting skills!"

I will no longer sit back and take this abuse from school administrators. If you want to believe I am crazy because I want my child to make some measurable progress -- so be it. If you want to believe I am crazy because I expect you to follow the law -- so be it. If you want to believe I am crazy because I have no problem speaking out about the way parents and children are made to suffer in this school district -- so be it.

In my opinion anyone that does not believe that I will stand up and fight back -- is crazy!
I am on my feet and the boxing gloves are well secured!