Sarah Zucca MS, LPC, CADC
Lovingly Piecing it Together
As I have shared, for over a year and a half all I read, dreamed, spoke, or thought about was Autism and Autism treatment. It wasn’t until I was feeling burned out and at my limits that I stopped and realized I never grieved. I found two books to read over that second summer after our diagnosis that broke down all the walls I had built up to avoid feeling the intense emotions that came along with my grief. The titles are: What Color is Monday? and Autism and the Family. I had been so focused on helping AZ get his services and learning how best to help him; I neglected to consider how Autism was impacting the remainder of our family, including maintaining my own self-care and emotional health. These books brought this glaringly to the surface, and I can still recall sobbing in my backyard while I read these books under the summer sun. They put into perspective everything I had been doing to stay afloat and gave voice to how exhausted I felt. When you are in survival mode trying to secure the proper services, implementing their recommendations at home, and dealing with fixations and difficult to manage behavior, you don’t stop to realize how exhausted you feel. Being a mental health therapist, you would think I would know better than to stuff feelings and not address intense emotions. Unfortunately, even counselors are guilty of doing the exact thing we tell our clients not to do. These books were my wake-up call to focus on myself and our family unit. I wouldn’t be able to help AZ as best I could if I was not well myself.
School has been one of the biggest fears of mine, both before he attended public school and currently. I think the best piece of advice I can give is no one else will look out better for your child other than you. While there are fantastic teachers, providers, and school administrators, they are responsible for hundreds or thousands of children. There is only one of your children. In order to best advocate for AZ, I have had to read and learn some more. I talk to anyone I can who has been part of the state advocacy centers in various capacities. I have asked questions to parents whom I have come across that have had to advocate for their child within their school and school district. I’ve tried to learn from them. And yet, despite all I’ve read and learned, I still made mistakes along the way with IEP and services his first year in school. Instead of beating myself up, I focused on growing from these experiences and being clear and direct on our expectations for our son’s education moving forward. I have read even more books to better understand our rights under Individuals with Disabilities Education Act (IDEA) and how to navigate if these rights are not being followed. I wish I could say this is not the case, but both personally and professionally I have seen school districts treat parents and children very differently based on how educated on the law parents are. I have no problem being “that parent” and letting them know up front I have done my homework and will be monitoring. Two books I highly recommend are Your Special Education Rights: What the School District Isn’t Telling You and The Complete IEP Guide: How to Advocate for Your Special Ed Child. Thankfully with advocacy, we have an incredible team in place to provide him with sensory breaks, challenge him educationally and socially, and who care deeply for his wellbeing. I can rest easier sending him away from home knowing these supports are in place.
When we left Kennedy Krieger that day in November, they recommended we first start with physical therapy and speech services and advised we eventually seek out occupational therapy. I am thankful they evaluated AZ as a whole person and did not do a cookie cutter treatment recommendation. As a counselor, I have read numerous evaluations and recommendations, and it saddens me that services are often given as “protocol”, without considering the individual child and his/her needs. In Pennsylvania there is a push for all kids with Autism to receive Applied Behavioral Analysis (ABA) services. While I am going to oversimplify this intervention and fully support this modality for some kids with Autism, I knew this was never something that would benefit my child. As a counselor mom I could never wrap my brain around viewing my child as a series of behaviors. I wanted to connect with my child. I wanted to see his emotional capabilities expand. I wanted my child to do things because “it’s what we do” not “because he will get a reward.” I will forever be grateful to a brave mom who opened her house to a bunch of strangers to share her knowledge on Social Thinking. When I sat there and listened to her I finally had peace about our future. It finally clicked which path would ultimately help my child not just now, not just in his teen years, but for the remainder of his life. I will do a blog, if not several blogs, about Social Thinking, as it is that good. But for now, I will share each child has unique needs and interventions must address these unique needs. If this mom had not taken the time to share and educate others on what she had learned on her own Autism journey, we may not have made the strides we have made. We might not have met the providers who have unlocked critical social milestones. I will never stop researching types of treatment modalities or interventions. I will always be open minded, without being sold on “quick fixes.” For now, I am confident we are on the right path on our treatment approach.
Autism does not go away. This is our journey for the remainder of AZ’s life. Each developmental stage will come with new challenges and areas to learn. We must simultaneous live in the present and also think about tomorrow, next week, next month, next year, 5 years, 10 years, etc. from now. Thinking about the future comes natural to me. I have always been forward thinking. Living in the moment, being satisfied with where we are in our journey, and not comparing where I wish we were are the hardest aspects for me. I also know this is okay. I will never let Autism define AZ, nor what he can achieve.
No one can tell me not to worry. I’m going to worry. No one can tell me not to be sad at times. It’s okay to feel sad. No one can tell me that it will be okay. Unfortunately, with Autism, there are so many unknowns. What I do know is I look forward to being able to look back in another 4.5 years and reflect on all we have learned, accomplished, and navigated. I will focus on celebrating each milestone, no matter how small. I will focus on teaching others what I learned, to include the mistakes. I will focus on normalizing Autism and getting the message out there that an Autism diagnosis is not the worst thing you can hear about your child. I will focus on showing the world my beautiful, red headed boy has so much to offer. While he will work hard to learn how to express himself, regulate emotions, and comply with societal expectations, I will be hopeful we continue to make progress with how society treats him and accepts how his brain and body processes information.