Jacob's journey has been one full of hope. Autism is a scary word. When Jake was about 15 months old he just stopped. Stopped talking, stopped clapping, stopping catching a ball, stopped noticing you, stopped hugging. He lost that twinkle that was in his eyes and retreated from the world.
At first we were told he was developmentally delayed with autistic tendencies. We lived in Florida at the time. He was serviced by the Early Learning Program there. He attended speech and occupational therapies at a facility that we paid for a few days per week and then two days per week a therapist came to the house to work with him from the ELP program. He transitioned into PreK and was placed in a varying exceptionalities room. At this point he was still having outbursts and tantrums --- can you even call murder-like screaming in the middle of a store a tantrum?. He could not speak. He was considered non-verbal. He used a few "words" that were mostly sounds to communicate like "uice" and "ide". We were working on sign language so he knew a few signs and everything was "more". There was lots of screaming, crying, pointing and banging going on. He was frustrated and so were we. His behavioral issues included banging his forehead until he hurt himself and elopement (wandering and bolting). The best I can say is that the schools meant well but were grossly under funded and highly untrained. We were beyond fortunate when a speech and language pathologist became his teacher for his second year of PreK. She was AMAZING. She worked so well with Jake and he adored her. He was placed with several other children in a language based self contained classroom. She utilized some ABA methods and the children all thrived in that class. He began using one and two word combinations and stopped running. We had Jacob seen at this time by a few specialists and finally received a definitive Autism diagnosis from the Dan Marino Center in Miami. We were hoping this diagnosis would be a starting point to judge this "problem" or the "issue". A means to an end because now we knew what we needed to make things better. The services and everything that Jacob would need to live his life to the best of his ability. We were not prepared for the financial fight we had to muster and all of the dead ends we would find in Florida.
When PreK was over and we moved on to a different school for kindergarten we had high hopes. Jake was to attend the Autism Kindergarten room in his older brother's school, which we loved. Well, that was much less than we hoped for. His teacher who we were told was an Autism Specialist was clueless. She sent home notes every day with sad face stickers on them and no explanations. She put our son in this chair she had in the room to restrict his movement and keep him seated. I had many meetings with her for the first half of the school year to try to figure out a way to see the progress we saw the year before. But Jacob was taking major steps back. So we paid for an actual ABA and Autism specialist to go into the classroom to work with the teacher and Jacob. She also came to our home to work with Jacob and all of us. Adam and I went to behavioral therapy training with a psychologist and took Jacob as well to see them. They confirmed his diagnosis of Autism. This was not improving Jacob's situation at all and we could not continue the financial hell. We were hoping beyond hope that we would be eligible for state funding for therapies or be able to use the waivers offered in the system to help our child. What we did not know was that there was a waiting list for help for children and adults with disabilities. That at age 5, Jacob would not see any kind of assistance for interventions until he was around 12 years old. Kindergarten was rough. It was exhausting and full of re-establishing routines. We set up our own work with Jacob at home and became his therapists and advocates.
Freaking first grade! Our savior from the north arrived. An actual autism teacher from our home state of New Jersey to take the reigns of the Autism class. Again Jacob excelled. He made major steps forward! Communication improved drastically and behaviors calmed. We decided to hold Jacob back a year to remain in this teacher's classroom. We made some great strides - actually recognizing some words, more 2 word sentence commands, and then even being able to enter the auditorium/cafeteria for lunch and programs.