RE: Tales of an Exhausted Autism Mom: Part One-The Bus Dream
Thank you for sharing your life with us.
We are waiting on our final diagnosis for our son. I am sure he is autistic and at first that diagnosis scared me. Not for our ability to accept it, not for fear of what life held for him, but the stigma of it to the outside world. People outside of our house, have already been very rude. I can't imagine when he is alone, when he is older, or if he does go to school.
I was thinking of starting to blog on here about our experience with our son, our experience with the medical/diagnosis process, and as we venture into the treatment. I hate all those words; it makes it sound as though he has this rare, horrible disease. To me it is what makes him, him. He is unique. There is no "normal" and once people understand that and stop categorizing people into these sections, the world may be a little better place to live.
Thank you again :)
I remember when I started realizing there was something going on with my son and researched so much online before I ever saw a Dr. They gave us a Sensory Processing Disorder diagnosis at that time, but they wanted to wait until he was 3 to evaluate for Autism. But I already knew. The signs were there from the very beginning.
I remember a couple of months of severe depression and guilt. I felt like I was mourning the loss of a normal life. In a way, I mourned the loss of the son I thought I was going to have.
After being on a waiting list for over a year (there's a shortage of child psychologists in our area), we are finally getting our full diagnosis in two weeks. Now, my only emotions about it are that I'm ready to hear the detailed results and excited to start new therapy. A little nervous about how busy our lives are going to be.
As far as rude people go: when my son was little, I used to take him to an inflatable bounce house place almost every day because it was up the street from our house. I was always so on edge because the other kids would just run over my son, cut in front of him, step on him, and the parents were always defensive and crude. One day, I happened to stop by when the place had been taken over by a special needs school on a field trip. That day, everything was completely different and I got my first taste of what being part of the special needs community is really about. All of the adults were smiling at my son and acknowledging that he was there, the kids were sweet and patient, and everyone was watching out for everyone else. I felt like I had stepped into a different world, and in a way, I had.
It takes a village to raise a child, especially one with special needs. The rest of the world only understands this if they are living it, too.
When I took Dre to the peditrician with his 11 month older brother, they gave me a paper to fill out for Autism. Snow passed it, but I also did it for Dre. I had suspicions then and he was 2; he failed it. I told the peditrician when he came into the room and he laughed and said those test give more false positives then real ones, just ignore it. He explained that since Dre was playing with his shirt while he was talking to me, he in no way could have Autism. I changed doctors a year later, when he told me my son's speech delay was my fault for spoiling him and being an anxious parent. If I would just learn to relax he would start talking.
When I moved doctors and started asking other doctors outside of peditricians, I found that there are only certain doctors, in our state, who can diagnose Autism, not peditrician. The peditricians in our state are not trained for it. That is why they give the test in our state so if they don't pass it, the pedtircian is to refer them to the specialist for a diagnosis. Needless to say his diagnosis has taken 2 years due to an incompetent doctor.
That is why I want to blog our journey because through talking to people and reading others stories online, I am learning we are not rare. I also want to help people understand that not all Autistic children are the same. My meaning is, when the specialist called to schedule his final appointment for his diagnosis, she asked if I would need help holding him or need help during his tantrums. I said no, he is a very calm child and really laid back. She was like oh, um ok. It was though she did not understand.
Dre is in speech therapy and he does well and I have found that this is a challenge also. Finding the right people who are there to give the best care and not just for the paycheck. She is our second one, the first just blew bubbles and talked to me about her life. We have also found that he does better on a slower schedule with her. Instead of twice a week, we are now going once a week. He talks more and engages more when he doesn't go. When he does go he punishes us by not talking for a day. It is all a learning game :)