Sunday, April 29, 2012
Autism Awareness Month
The last thing any parent wants to do is admit that there may be something wrong with their child. In our eyes, our babies are perfect and the most wonderful things in the world. We love them so much that it sometimes makes us blind to the most obvious things.
Ken and I found this out painfully around the time Joie was two. Then one day we had to face facts, our daughter had yet to speak a word and we needed to find out why. No matter how painful the truth may be.
After Joie was first born she met all the milestones, but somewhere around eight months her progress slowed. When other children were walking, she was still crawling. While other kids were talking in full sentences, she would only grunt and point. Where you could somewhat reason with other children, when things did go her way she would have massive meltdowns.
We heard all the excuses and arguments. It’s because she’s the youngest. It’s because her brother is so much old and you all spoil her. Maybe she’s not hearing because she had so many ear infections.
We finally decided that we needed to find the answer for ourselves. So, we took her to various specialist, teachers and doctors and found out…nothing. They couldn’t explain to us why she wasn’t talking or why she was so emotionally delayed. Worse they couldn’t tell us how to make it better. For you see, we were still at the stage where we hoped that there would be some magic pill that could make things all better.
At three they put her in early intervention classes. Joie began to speak some, but only close family members were able to understand her since she was unable to form certain sounds. While on the outside we would jokingly call it Joie-eese, on the inside we were crying. It was so heartbreaking to see how frustrated she would get when she tried again and again to get her point across. Only to have people not understand her, no matter how hard she tried.
Joie eventually made up her own form of sign language. While it helped with teachers and family members, the translation would be lost on the rest of the world. To make matters worse, Joie was becoming painfully aware of the strange looks she would get when we were out. I think the most hurtful incident was when we were at a grocery store and a lady asked me is Joie was retarded. WTF!!! Mind you my daughter was standing right next to me at the time and she heard every word.
As the years progressed, Joie stated elementary school. She was in a regular class, but they would pull her out for speech and special needs classes. Even with all this intervention Joie still fell several years behind her class members in reading and math. That divide still remains to this day. Meanwhile another gap reared its ugly head. Joie was also behind emotionally. So, while she may be ten years old on the outside, mentally she is seven.
Let me tell you this was one of the hardest hurdles to come up for us. Kids can be cruel and they never fail to remind Joie of how much of a baby she is and how they don’t like her. So many days I pick her up at school and have to dry her tears on the way home.
During all this we couldn’t help but wonder if maybe Joie was suffering a form of Autism. Then as we about to lose any hope of ever finding an answer, help came from two separate sources. First, we switched to a new family practitioner. Not only is Dr. Shawn Conner a fantastic doctor, but he is a wonderful human being. He immediately shared my concern and referred us to one of the best pediatric neurologists in the State. The second development is we got accepted to a new program at U of M hospital. It was targeting at diagnosing and treating children with autism.
We eventually found out that while Joie doesn’t have autism, she does suffer from neurofibromatosis. It a disease that can affect both speech and emotional development. Like autism, there is no cure or magic pill for this disease.
Maybe we should have been upset with this news, but as strange as it sounds, we felt an immense sense of relief, because we finally had an answer. I think my father put it best when he said, “At least you’re not fighting a ghost anymore. It has a name and you know exactly what you’re up again.”
People have often asked me if there is anything I would ever change about Joie. The answer is simple—hell, no. Joie is perfect the way she is. She’s better than perfect. She the amazing ability to see beauty in anything. Just walking down the street with her is an eye-opening adventure. She will point out things that the jaded population has looked over for far too long. Be it a pretty bug, or the perfect flower or a nest with a mama bird in it. She also has a connection to animals that is almost magical. In a way she relates to them better than she does people.
I’ve shared this song before, but I think it’s only fitting that I mention it again. One day when I was in tears over how cruel life has been to my daughter, this song came on the radio. By the time it was over I was crying for a whole different reason. Then I said to myself, “Yes, she is perfect. Just the way she is.” Thank you for taking the time to read this.
I apologize for any typos. Once I got stared, the words just started pouring out and my fingers had trouble keeping up. I would go back and edit it, but I’m a bit emotional at the moment. I will be giving a free pdh download from my backlist away, so comment below to enter. Plus, make sure to watch this video below. I hope it touches you as much as it did me.