The first step is to notice that something is not completely “right”. It is particularly helpful when other people are pointing out everything that your child “can’t do”. I was told over and over to not worry about some things. “my son didn’t talk until he was 2, 3, 4” “boys talk later” “he is just an active, normal, little boy”. Then my favorites all about how he “needs a spanking”, “we basically suck as parents” “he does this or that strangely” “he doesn’t do this or that the way he “should” “
Where do you go from here? There were not the specialist and the information that there is now. We had Juno dial up. Our pediatrician went from telling me something was wrong to insisting that he could not be autistic. There were two doctors in town who would give a diagnosis. The one was self pay only. The other one took our insurance.
By the time we went in I knew the answer. He spent time talking to us and testing CJ by playing games and asking him to color, etc. He sat us down, looked at us and said “I guess you already know what I am going to say”? I liken this moment to a movie when the camera zooms in on a character and you can still hear what is going on in the scene, but the character’s voice is loud over it all as the character looks directly into the camera. I was the one being sucked away as the doctor spoke. I was in the camera as the doctor and the noise of the office went off into the background.
He prescribed medication. Now the real work started. I was introduced to a mom who had a son a couple years older than mine. She was a staffing specialist in a neighboring county and had a son in our county who was autistic. She literally “told” me who to contact and what to do. I took my marching orders seriously. I never take anything lightly. I mapped out a plan and started. I never took no for an answer. I insisted on being allowed to fill out paper work. I didn’t ask permission. I just assumed that since we qualified for services, all I had to do was fill out the paperwork and/or contact the correct person. Naively, it worked for me. I wasn’t that thrilled with it taking almost 6 months to get everything into place. I found out later that there was up to an 8 year waiting list for any services. He started getting ST and OT at school 2 months after school started, thanks to his teacher’s persistence. I found out later that there was an 18 month waiting list to get evaluated.
I started navigating the labyrinth of the world of “special needs”. Everything involves research, paperwork, meetings, numerous phone calls and lots of persistence.
And patience, something usually in short supply.
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