Our journey started when a DayCare Director noticed that Julian did not engage with the rest of the kids. At home we noticed how he lined up all his toys, and had little words, but being our first child we didn't know the signs. .
At first, the diagnosis left us feeling overwhelmed and unsure of what the future held. We embarked on a journey of understanding and learning about autism, seeking guidance from support groups, therapists, and experts in the field.
Here is our journey in hopes that it can help you with yours:
Get a diagnosis! It is important to get the ball rolling when it comes to services for your child, you must get a physician to diagnose. Developmental Pediatricians are scarce, this may take months, so be patient but diligent.
The Importance Early Intervention There is no time for denial, no time to feel sorry for yourself, that kid needs you to get to work! Julian began services right in his daycare environment, speech and OT. Early Intervention is key to finding breakthroughs for your child: how does he learn? what methods to use? At first they would come for an hour or so per week. Then he began 1/2 days at Early intervention service provider. For us keeping him in an environment that was not for special needs children was important, so he split his days so he could be exposed to both behaviors. We used both insurance and paid out of pocket for speech and other activities to expose him to opportunities.
Philadelphia is lucky to have The Center for Autism. This is where we encountered major success with issues like sensory or tactile challenges. He would only eat very few things because of the touch or sensation, but they helped introduce methods to address these issues and broadened his tolerance for foods.
Navigating the Education SystemJulian went into a regular kindergarten class in our local public school. This was good for him, but as he progressed to the first grade, we found him to be lost in the large class sizes. We lived very close to our school, Henry Houston Elementary, but there was no autism support there. We met with the Principal and worked on a plan to bring autism support to the school. After success with one class 2 more classes were formed so that he and other kids could stay there through 8th grade. He was making his mark on the world and helping the autism community at a young age.
Despite all the efforts school can be challenging. There were good days and days where a simple flight of steps inflicted terror on him; when he felt the need to scream or cry for no reason. You have to find the triggers and learn the right responses to the stimuli. We were lucky to have had some good "TSS" Therapeutic Support Staff during his early years. It is important that you keep clear documentation from your Developmental Pediatrician and your schools because you will have to constantly fight for TSS hours for your child. Don't get discouraged and don't give up! You are your child's biggest advocate! Don't take no for an answer.
Transition to Young Adult Julian spent his last year of high school at Drexel University/Project Search, a joint venture with his high school Hill freedman World Academy. Project Search took the education from the classroom into the workforce. He worked on multiple sites and gained valuable experience. https://drexel.edu/autisminstitute/community-projects/Transition-Pathways/Project-SEARCH/
He attended a post high school program at SJU Kinney Center for Autism. He had participated at Kinney since he was a child for summer camp, so the transition for easy for him. Julian is 22 years old now, and has progressed amazingly, he even has a job, but still has so far to go. He still does not use words as much as he should, and he obsesses over things sometimes. Math being one of them. He has ticks and quirks like washing his hands constantly, drinking from every water fountain, or wiping everything he touches. These come and go, but the key is to find the diversion tactics to help him function without these overtaking his life. It takes a village, not just people but resources, and you can never stop finding opportunities to develop your child's skills, from art, music, sports, and most important education.