I belong to several Facebook Groups dealing with support for parents who have children with autism. I see many parents’ posts describing the behaviors their kids with autism are displaying and how overwhelmed they are. How many of us get a parenting manual when we have kids in general? It’s nice to be able to call friends or family when you have kid questions and not sure what to do. It’s much more challenging when you have a child with special needs.
I got a Big Black Binder when my son was diagnosed with Autism Spectrum Disorder on December 7, 2009. I remember starting to look through that book and I was overloaded with information and not knowing where to start. At the time, Joshua was a picky eater and not sleeping through the night, waking up crying. He was a path of destruction and didn’t talk. He was the epitome of the country song, “A little less talk and a lot more action”. There were so many things he did that didn’t make sense to me and I wasn’t sure what it all meant.
What would have been nice back then, was to have someone walk alongside me as I navigated what to do. I already had Joshua in speech therapy as that was got us to get an assessment for autism in the first place. We had an OT assessment and other than a few handouts, we had to wait for an opening that didn’t happen for another 5 months with OT. He only had speech therapy at the time with an exceptional therapist trained in the DIR/Floortime method, which made a lot of sense, working on engagement with him. He didn’t get into Developmental Preschool until late November after turning in all the paperwork to get him assessed back in early August. So he was just starting and then had about a 3-week break until after the holidays. Fortunately, he started OT with a clinic that did DIR/Floortime and I learned a lot but I was picking up information little bits at a time. I had also been encouraged, thankfully, early on by a friend to try the GAPS diet, a specific carbohydrate diet, which turned out to really help Joshua with his gut issues helping him to sleep better once he detoxed from gluten. Fortunately I was able to get set up with a nutritionist, which I searched out, who had knowledge of specific carbohydrate diets and autism.
I was homeschooling Joshua’s 3 older siblings during this time and trying to navigate the world of special needs. It wasn’t easy. I had a lot of trial and error. I don’t know how much I even looked at that Black Binder of information. I didn’t open it very much, to be honest as I would easily get discouraged trying to find resources I wanted for my son and not knowing how to go about getting them other than ask the other professionals I was working with. We lived in the Greater Seattle area at the time and insurance didn’t cover any kind of ABA therapy. OT, Speech, and Vision Therapy we were able to do with the insurance we had at the time and we even tried neuro biofeedback for a month before our COBRA insurance ran out. We made too much money to qualify for financial assistance through the Department of Developmental Disabilities through the State of Washington. Joshua wouldn’t qualify for any kind of support outside of Personal Care Services for another 8 years we were told. Even with Personal Care Services, he was still not quite eligible as he was within the normal range for his age. There weren’t any kind of grants we could apply for to help that I could find at the time either.
Like many mothers, I did a lot of research on the Internet. I came across many Facebook pages and one that was quite helpful was The Autism Discussion Page. Outside of Joshua’s special education teachers and therapists, I only had the books and websites I found online to try to guide me as to how best to help him. We were blessed in that we had family friends who were able to babysit him and his older siblings. He was non-verbal primarily and would elope so that was a scary situation if we couldn’t find him. Twice he got out of the house/yard and I was terrified running out to go look for him. He would run to the neighbor’s yard when we would go out to the car if we didn’t have a hand on him and he was oh so fast. I called it my Joshie Aerobics!
Joshua has done so much therapy since then and has truly benefited from everything we’ve done with him. I’m grateful he is able to be home by himself for up to about 2 hours, which still makes me nervous but he has a phone and knows the basic safety rules. The boy goes outside to line up for a fire drill anytime the smoke detector goes off when I accidently burn something.
I was able to get certified as a Behavioral Intervention Specialist, working since 2014 with kids who have autism and other developmental disabilities and have been able to work for two different agencies, now working at the agency where my son gets his treatment. I am also continuing to learn on my own through Joshua’s own therapies. For the last 6 years, I have done some continuing education/training including taking the 40 hour Registered Behavioral Technician training, while also learning about TBRI (Trust-Based Relational Intervention), Social Thinking, and Collaborative Problem Solving techniques. There is so much to learn, especially in regards to how to help kids with disabilities learn best by first helping them to regulate.
In my role as a family educator with the DDA I work for, I am able to work with some remarkable parents, using a coach approach and meeting the parents where they are at while discussing with them what it is that they want to learn about their child’s disability. It’s such an honor to walk alongside them and encourage them as they make the mindset shifts necessary to understand what their child’s challenges are and what is needed to help them learn more functional behavior. I consult with them regarding various approaches to consider, listening to their concerns, asking questions to gain understanding, and challenging their mindset. We are examining the “tools” they have and what “tools are needed” to add to their “parenting toolbox”. There are a lot of resources out there to help, thankfully and we take the time to examine them to see if any parts of an approach would be helpful with their child, discussing videos, school issues, learning what it takes to collaborate with other professionals while also asserting oneself as their child’s advocate.
The goal a lot of parents have told me is to get to the point where there aren’t as many professionals in their lives while having their children live fulfilling lives as independently as they can. I know what that feels like and share that goal as well. What an honor it is to walk alongside these families as they grow in their skills/knowledge to help their kids in their development. It’s a development for parents and caregivers as well, as life is forever changed from what they had envisioned but also for the better as they are now all the more aware of what it means to consider what living with a child with a developmental disability is like. It’s both a difficult journey but one filled with challenges and joy.
How are you doing on your parenting journey with your special needs child? Are you needing some guidance or support?
I can offer that unique understanding coaching as well as consulting with parents as well as with individuals who have disabilities. If you are wanting to explore the various issues involved with navigating this world while supporting someone with a developmental disability, please contact me and we can begin that journey to fulfillment together.
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