If we followed prevailing wisdom, my daughter would be at home driving me up a wall. We would both be frustrated with each other, mad at a world too small. This would have been our life if we hadn’t questioned our doctors and if we hadn’t challenged our school. It’s scary to think how close we came to living such a limited existence.
The doctors labeled Jess as having mild, idiopathic cerebral palsy. A diagnosis of CP is just about as broad as saying your child is learning disabled, there is a huge spectrum. Even though Jess did not present as CP as an infant, they gave her this label because doctors don’t like saying “they do not know”. From that point on, the doctors and educators never questioned her diagnosis. The problem was, it was incorrect. Changing a diagnosis is as difficult as getting the IRS to say they made an error! Jess’s diagnosis never sat right with us. There seemed to be something more going on. We didn’t resolve this issue till Jess was thirteen. After having a casual conversation with Jess’s teacher, we noticed that Jess was similar to another classmate. This prompted me to have blood work run. Within two weeks, it was confirmed, Jess had Angelman Syndrome.
School’s response to this was “they were providing all the therapies that a child with AS required”. The prevailing wisdom at the time was that all children with AS were considered to be severely impaired. The problem with this thinking is you can’t judge a book by it’s cover! There aren’t always clear indicators as to who is going to be successful. How can we know what someone’s abilities are if there are no expectations? School steered Jess away from an educational program and towards one for living skills. I didn’t know it at the time, but they decided my daughter’s fate was to be that of adult day care.
Before Jess was diagnosed with AS, the only support I had found was through the online service Prodigy (yes, this goes way back). Unfortunately, this was for CP. When Jess was diagnosed with AS, the only information I had found at the time was not very promising. Now I’ve learned that there were some families that were connecting through LISTSERV and they were able to share information via email. I wonder how our life would have been different if I’d found the proper support group? Would I have learned to ask school different questions? What school had been doing wasn’t working, Isn’t the definition of insanity doing the same thing over and over and expecting different results? How can there be any innovation if we accept a herd mentality? If everyone went along with the crowd, who would the innovators be?
Currently, there are changes happening in the AS community. This is because a few people challenged the prevailing wisdom. I am just now meeting teachers and parents that are making it their mission to raise expectations for children with AS, as well as, other children with complex communication needs.
Change does not come because we go along with the crowd. If you are raising your child by general consensus, then be prepared to learn that some of this information may be flawed. It isn’t that people intentionally make mistakes, it is that they are too afraid of making a mistake. People find comfort believing they have done their due diligence when they make a decision based on accord. They shut their mind off to other opinions because they found data or other people who support their thinking. When I was most vulnerable, I followed. I did not trust my gut, I’m only a parent.
It’s hard sometimes having discussions with younger Moms who have not been around the block. Like I was, they are fearful that their child isn’t reaching typical milestones. They are fearful that their children won’t talk, or worse yet, not be able to communicate at all. They tend to think the experts have all the answers and that all the information they research is true. The only wisdom I can impart on them at this time is to not take everything at face value. Just because someone has a degree doesn’t make them infallible. Don’t take my word for it, go ahead and Google “misdiagnosis”. The error rates are amazing. Remember, someone had to be at the bottom of their class! Bottom line, you shouldn’t decide your medical or educational decisions based on what everyone else is doing.
In some ways, I’m frustrated by all the errors made along the way. I will never know if things could have been different. Maybe we had to wait till the right AAC program (Speak for Yourself) was developed and wait for her seizures (which I believe compromised her motor planning abilities) to lessen before she was receptive. All I know is that we didn’t give up. If we had, then the experts predictions would have become realized. Jess would have been home, she would not be in the community and she would not be able to communicate.
As for our life now, we are on a slow but steady pace. These last two years, Jess has come a long way. She transitioned to an occupational training center. She is learning how to work and is becoming more of an individual. It was not that long ago, I had to stand over her to get her to complete multi-stepped tasks. Be it feeding our dogs or getting dressed, she required too much prompting to complete anything on her own in a consistent manner. Much of this was due to not having expectations or consequences placed on her. Now, Jess can do these things that, at the time, seemed like she would never attempt without a great deal of support.
There are dozens of personal examples I could share where the experts were wrong. As much as they are to blame, we are equally at fault for going along with them, because, you know, they are the experts.