My autistic son Luke never ceases to amaze me. This fun photo of him sitting in his favorite rocking chair creates a look as if he does not have a care in the world.
I often think about the impact autism has on our medical and governmental communities including, but not limited to social workers, physical therapists, special ed teachers, speciality physicians , behavior therapists, and social security experts. As I focus on the twenty six years I have vested in my gorgeous son and his journey, I vastly underestimated how much would go into all that we have aspired for Luke. Looking back, it is hard to think about all those years, but know this it was an honor for me as Luke’s mom to give him my best and find all the resources I did.
When Luke turned 18, I gave him quite the graduation party and invited 75 people to celebrate Luke’s achievements. It was not your usual guest list like Luke’s friends, but rather it was a collection of occupations that personally became friends with my family. It was a sensational party seeing folks that worked with Luke even dating back to when he was 18 months old. It was interesting watching Luke who was shy and holed up in his room hardly able to come out due to the stimulation from his sundry of guests.
Many of our guests were expensive professional workers. They deserve to be paid well, but it is crucial to understand their costs and other shocking surprise costs. Take into consideration a family of four with two adults initially working full-time. One parent may need to go part-time which becomes a permanent bombshell drop in family funds. It is especially hard when one of the children may have a severe disability. This burden tends to be carried by the mother. Relieving this burden on a family of four, for example, does require a lot of thinking caps to assess and brainstorm unique models to make sure support is in place for the ones most jolted. In the past for myself this was difficult , but it is even harder for the young families of today. What can we do?
My thought is more research dollars is needed in finding a cure. This seems impossible to many, but not giving up is vital to family members who deal daily with autism. Additionally, we need to target dollars toward treating behaviors and other symptoms that cause this disability to be so detrimental. This goes into training and more training. One example I like especially was bringing normative teenagers into my home that would play side by side with Luke. I did this often and even had one teenager who grew up to become a physical therapist. I had others in college who later became supervisors in autistic programs, psychologists, and even registered nurses. I would like to think since I am an RN that I had a little to do with that vocation that some of ‘our’ students decided to venture into! Another example you might find unique is to bring a pet into the life of a person who is different abled. Luke has always had a pet. Mind you our last pet is well trained, but not professionally. Training of animals is expensive, but an indispensable force toward keeping behaviors in check in autistic people.
I know there are those who are committed to building on the best treatments for people with autism. It warms my heart knowing this, but there is so much more to do. I write occasionally to remind myself to encourage those who can make a difference, please do it.
Below I want to share a special project I created for Luke that interesting enough was developed in a way that most autistic people can relate to. Pictures. I paid for a visual map several years ago that illustrated Luke’s life story. I have looked back on it frequently to remind me of his gifts and strengths. Credit goes to Tim Corey on his fine work in this area:
I wonder sometime ( and maybe there is one) if a tool perhaps in a form of an app for the computer could be put together for our younger parents that will put all the resources together in one place. IT would be good to track different pathways or directions all the members of that tool followed so that new projects could be developed toward solutions for future reference. If you are a legislator and happened upon my blog, please engage with the autism community and FUND studies allowing for more research. Become part of the solution and support us to find additional possibilities in developing new therapies for autistic children and their families who would benefit.