Jacob was diagnose with autism at 2 and half years old. I always thought something was different with Jacob since the day he was born. He would constantly scream and cry as a baby. Doctors passed it off as colic and gas the first year. But I sensed something wasn't right. The only thing that calmed him down was the sound of running bath water. So for hours the first year I sat on the toilet, holding Jacob. Sometimes I was crying myself. Jacob would stim and get excited when he heard the water. It was difficult to have a normal life. I had to leave my job, because I could not get anyone to watch him, because Jacob would constantly scream. Jacob would became over sensitve to lights and people in the stores and resturaunts. He was always screaming. I would become embarrassed and sometimes cry. I advocated for my son, to my doctor. I would say to his doctor, look I worked at Boces. I know the signs. My son is always screaming. He is now bolting and not even looking at me when I am talking to him. I fought so hard for a referral to a Developmental Center in our city. I was determined to get Jacob tested. I finally got it. Jacob was tested and was diagnosed with Autism-Mild to Severe.
I knew some of the things I needed to do. Thank goodness for my Boces training. I made a pecs book and started working with Jacob. We took advantage of early intervention, which included Boces Playgroup and home services until age 3 and he transitioned into Boces Preschool. We had a great team who didn't only support Jacob, but us as well. They had a parenting class for children with special needs, while the kids were doing Preschool. We took advantage of it. They would have speakers and taught us about programs to help out kids. They taught us so much about Service Coordination, Advocacy, Disablilty and more. The would go through the application processes with us for these programs. Without Boces, I would be so lost. When Jacob left Boces, they cancelled the parent program, do to not enough funding. This is sad, because I feel a lot of parents with special needs children can use this kind of help and support.
I really wanted Jacob to stay at Boces but he was pulled into the school district we lived in, which did not have a good special education program, though my 2 typical children did fine there. Saying that, we moved into the neighboring town and watched Jacob flourish. The school district is very attentive to Jacobs needs and very supportive of us.
We also got involved in ABA study through the Developmental Center. Jacob did this study from ages 5-16. This was a cool program where the doctor would come out and work with Jacob and I for 1 hour a week for the first 5 years and after that, it was twice a year. We would always get updated reports and testing. Jacob loved it and it was a very positive experience. It was paid study but the paperwork and testing was more important and Jacob's behaviors were improving. Both Jacob and I grew and learned from the experience.
This was a hard journey. But I would change a thing. :) It made me stronger as a person.
This is a video we made when Jacob was 7. Back then I found a program to work on Jacob vocabulary and speech. In the video, Jacob does some stimming when he is excited. But he has come so far. It takes a lot of work and patience.
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