I have been thinking about writing this post for so long. Almost two years, in fact. I’ve started it many times, but I haven’t been able to find quite the right words. Instead of using the perfect turn of phrase, I’ve decided to just jump in and use the imperfect prose that comes from my heart.
Many of you know that Joseph received an diagnosis of Autism Spectrum Disorder (ASD). It’s not something that I have hidden from our family and friends and have no trouble discussing with others. However, I have been hesitant to discuss it here because this format doesn’t leave much for conversation or questions that so often follow that statement. ASD is such a broad, umbrella diagnosis, it’s like saying I have cancer. . . Cancer can mean anything from something completely treatable, like a small melanoma that can be removed to a devastating, evasive disease like systemic bone cancer. . . or anything in between. Instead explaining ASD as a whole, I’d rather share Joe’s story and how it relates to him. If you’d like more information about ASD, I’d suggest looking here and here.
We started noticing some speech delays with Joe right around 2.5 years old. At first I thought it might be because of the stress of moving from Columbus to Chicago, but after talking with our pediatrician (and some great advice from my mom) we sought some assistance through Illinois’ Early Intervention Program. (EI) This state-run program gave us access to in-home speech, occupational, and developmental therapy until Joe turned three, after which he would receive therapy through our local school district. I cannot express the gratitude and love I have for our therapists, especially Jamie and Janna, they were amazing with Joe and provided me no small amount of comfort.
When Joe turned three, he transferred into our local school district’s Early Childhood Special Education Program (ECSE) – a specialized preschool program for children with special needs. Again, we were blessed to work with some truly wonderful, talented teachers, therapists, and staff. They made the transition of Joe going to school, something I was anxious and scared about, a true joy. Joey absolutely bloomed and his progress was astounding. I know that it is because of the dedication of that team that allowed it to happen.
After Joe turned three, we took him to a developmental pediatrician, Dr. B with Lurie’s Children’s Hospital. Dr. B did a lot of testing and came to the conclusion that that Joe fell somewhere on the Autism Spectrum. He is considered to have a “scattered diagnosis” meaning that some typical traits are not present in Joe, but others were. Overall, he’s considered “very high functioning, highly verbal, with some issues with sensory processing.”
Joe continued in the ESCE while we lived in St. Charles and again once we moved here to Grand Rapids. He is excelling in the program here and we will soon find out the plan for Kindergarten. He is testing very high academically – currently reading on a second grade level, understanding math concepts, spatial relations, and more. His challenges includes peer interaction, some pragmatic and social speech skills, attention span/focus, and compliance with non-preferred tasks.
I can’t overstate how much of an impact EI, our schools’ ESCE program, and all of our wonderful educators and therapists have had on Joe. Especially now when many of those programs are in jeopardy. I cannot imagine where we would be without these programs. We are also VERY fortunate to have insurance that has helped defray the costs of therapy, many families are not in that situation.
I wanted to share because I know that there can sometimes be misconceptions about ASD and a tendency for some families to hide their diagnosis for fear of people not understanding or stereo-typing their children. I feel that ASD is only one small part of Joe, but it does help make him who he is. Why would I ever want to hide part of that beautiful boy away? I never will do that, it would dull his sparkle.
All in all, Joseph is like any typical five year old. He loves playing with cars, trucks, trains, and legos. He loves being outside and exploring the world. He loves to swim, sing, dance and play. He loves his iPad and watching anything by PIXAR. He is stubborn, generous, sensitive, strong, kind, smart, and silly. He brings joy and happiness to all that meet him and is truly my sun and stars.
April is Autism Awareness month. Please consider participating in some way. Perhaps by lighting it up blue, join a walk, or donating supplies to your local school’s Special Education department.
One thought on “Joseph: living on the spectrum”
What a beautiful letter .You are a great writer and wonderful mother. So glad Samantha you are part of our family. Joe ,is so lucky to have such a great mother and father. I also thank all to people that have gathered around ,Joe and given him a great start in this journey of life. He has made such strides and continues to amaze me. Thank you for everything you have done and continue to do . Love Grandma Colley