Autism, like life, is a journey. Each day and each stage brings new challenges, accomplishments and questions. As a parent of an adult on the spectrum, I am very aware of the phases and associated responsibilities for each part of my family’s journey. Having moved through early childhood services, local school districts and now long term Medicaid waiver programs, and other community resources, I have learned the lingo, limitations and opportunities available for my son. Sam, who is now thirty years old has shaped my life in many ways.
For instance, I would never have become a speech pathologist or had the nerve to start a business if it hadn’t been for Sam’s autism. I learned so much from Sam’s first (and fantastic) speech pathologist that I knew this would be a wonderful vocation for me. I could help Sam and help others! Early and intensive speech therapy was a big part of Sam’s life, from age two years and forward. If you are interested in learning more about the importance of speech or occupational therapy for your child on the spectrum, Speech & Occupational Therapy of North Texas has locations in Frisco, McKinney, and Plano. We would be happy to talk with you about our family centered approach to treatment.
Learning early on that I had limited control over life events – like how a trip to the grocery store might go or if Sam would sleep through the night helped me learn new coping skills and how to creatively think outside of the box. It also taught me compassion as I realized that parents can’t always control how their child will handle certain situations. I also learned how to advocate for my son, how to use IDEA to help him get an appropriate education, and how to stand toe to toe with other professionals involved in my son’s life. I met so many other wonderful parents and professionals throughout this journey. Some of my very best friendships emerged from working with other moms within various autism associations, state boards or disability related organizations. I never gave up until I thought I had done the best I could possible do for my son. All of these experiences gave me the drive and courage to pursue a Master’s degree in my late thirties and to then start my own business, Speech & Occupational Therapy of North Texas fourteen years ago.
I always believed it was important for Sam to be included with his typically developing peers. For his sake so that he could have good models of interaction and normal environments. But also for the peers’ sakes, because they would be the citizens and voters of the future. The more comfortable they felt with my son and others with ASD or other challenges, the more supportive our society would become.
I have some wonderful memories of Sam with inclusion and some very sad ones, as well. We actually had to go to due process against a local school district to continue Sam’s inclusion as he reached late elementary school age. I am very grateful to God that we won our law suit and Sam was able to stay with his typically developing peers for a large percent of each day throughout his remaining public school experience.
In our clinics, we emphasize family training and involvement, having the family or caregiver join each treatment session for at least a short period of time. Partnering with families helps provide parents the confidence and direction needed to generalize skills in the real world where we hope all of our clients will participate.
Now Sam lives in a group home in Collin County. Again, to get what was best for my son, I had to take some initiative and buy a home to rent to an HCS provider. I did this at great financial cost (the down payment came out of my retirement money) but I have never regretted this decision. We parents understand these kinds of priorities, don’t we?
We have been able to keep Sam in his community, involved with local activities such as Plano Parks & Recreation, in worship and fellowship at the Height’s Baptist Church, and with various volunteer activities. Sam also spends the night twice a month in addition to longer visits at holidays. This gives us an opportunity to do our favorite things together – like cooking and taking windmill tours – and also helps me stay up on how he is doing throughout the month.
I know that we are just in another stage of our journey. Perhaps his home will not always be the best living setting for him. Or perhaps we will develop more opportunities for individuals like Sam that will give him even more independence. And like all parents, I have concern for Sam’s quality of life when I am no longer available to help. But I have learned to have more faith as I have traveled this path. It is all a part of our Journey and I am thankful for the wonderful young man my son Sam has become!
For more information about autism spectrum disorders, visit this informative site about DSM-5 criteria for ASD. Autism Speaks is a wonderful resource for families.
For great information about IDEA visit Wrights Law at https://www.wrightslaw.com/
For current information about state/federal funded services for individuals with ASD visit: