He was babbling just fine, and then one day, he just stopped talking. We thought he was just a thinker and that he was quiet. He never complained, ate everything (didn’t know when he was full) and did a lot of things we thought were “boy like”. He enjoyed a lot of ruff play, climbing and tumbling and the feedback I got from family and friends is that he may be a late talker.
I finally got fed-up with the not talking thing around 16 months. I made an appointment with his Pediatrician and wanted to know why my child could not call me mama. She suggested that I call Early Intervention and get him evaluated. His health and growth was normal and I was looking forward to some help in the talking realm. When they evaluated my son, they told me he had a speech delay and that he should see an Occupational Therapist and Special Instructor to help foster communication and steady his balance. I agreed and these specialists came every week.
My work schedule was getting too hectic to be home once a week and I had to move William to another daycare.
Let me backtrack before I go any further. While going through these evaluations, I had another child – my lovely daughter, Danielle. I am married, but most of the children’s stuff falls on mommy, but my husband is very supportive of everything that I do for Will.
And the saga continues….
We decided to research a daycare where the therapists could see him and said that they do accept special needs children. After about 3 months, the daycare decided to meet with us and let us know that William needed a TSS (Therapeutic Support) or he needed to go. This would be my first indication that William had a split personality; One personality with others and one with his mommy. With me he was a good boy. Liked to play and get attention, but because he was pretty much the only walking child, he had full range to get up and go as he pleased. These skills did not translate well to a structured daycare setting and rather than conforming to a child, the daycare decided that he needed to conform to them.
After I picked myself up off the floor from the thoughts of having my son be a daycare dropout, I researched an agency that could evaluate my son and let me know if he can get TSS. This is where I first heard of the Autism Spectrum and how he may need to see a Developmental Pediatrician to get diagnosed.
I thought that the bad news just kept getting worse and worse. I had all kinds of thoughts and worries and didn’t know what to think. I think I cried for days but I knew I had to do something about this.
While still participating in Early Intervention, I decided to ask his specialists about this. They informed me that this was a good idea but that William was making progress in trying to babble, but just to be sure, go make the appointment. This took FOREVER to get an appointment, but we did finally see a DP and that’s when we got the diagnosis, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).
In one way, I was sort of relieved to be able to call it something. In another way, I was not relieved for others to have a label to put on my son. I am totally against labeling people because I think others tend to lean on that label to limit ones abilities, and I knew William could achieve so much more than anyone could imagine.
So with this diagnosis, we ventured on to get him more services like Speech Therapy added on to the other specialists from Early Intervention. We also left that daycare and decided to take a vacation while researching another program best suited for HIS talents.
We decided on the YMCA because William liked art and music so much. They were experienced with kids on the spectrum and even his therapists were happy with the change. We still decided to pursue a TSS, but instead we were awarded a Behavior Specialist.
Now William sees a Special Instructor, Speech Therapist, Occupational Therapist and Behavior Specialist once a week, every week. He also gets Private Speech and OT twice a week. He picks up his social behavior from being with children his own age at the Y, and he is doing so much better through Sign Language and the PECS system.
Through it all, I thought my marriage was going to fall apart, we were going to be penniless trying to pay for therapy, and that I was going to lose my job over all the days I had to take him to the Dr., and it did. My husband decided this was too much for him and left, but through this we have survived.
Now, William is fully mainstreamed and attending a Montessori school. He receives behavior support, speech therapy, occupational therapy and teacher. He is no longer aggressive and is a sweet loving child. I get tired, but I continue to fight as hard as I can to continue to uplift him to a better future.
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Originally posted. August 5, 2011