Becoming a Special Needs Mom: Autism . . . From Diagnosis to Advocate
Guest blogger and Autism Mom, Beth Moore, tells us how she became the wonderful advocate she is, working to help gain insurance coverage for ABA Therapy and for many other needed opportunities for children diagnosed on the Autism Spectrum in her home state of Tennessee.
A few years ago, I was a stay at home mother of four young boys. Life was crazy and hard. At that time, my boys were 6, 4.5, and my twins were 18 months old. My job consisted of countless diaper changes, feedings, and messes. Just to keep my mind from melting to mush, I tried to keep up a blog. There is one particular entry that I posted when my husband was on a business trip.
My dear sweet husband went away on a business trip last week. While I do understand that he was working, I still can’t help from being a little envious. The thought of leaving my house and all of the work that goes along with it, just to go to an interesting place, stay in a hotel, be around adults and have adult conversation. To worry about just me, for a change. To get myself ready for the day, to watch what I want on TV, and to have some peace and quiet.
—from If SAHMs Went on Business Trips
What I didn’t know at the time was that a year later, my life would become much more complicated and stressful. That is when I went from being that mom of four, to adding “special needs mom” to my résumé. About a year after I wrote that post, one of my twins was diagnosed on the Autism Spectrum. It was the hardest thing I had ever been through in my (early) 30 years of life. Being a pediatric nurse, I knew what Autism was, although being out of nursing school for 10 years, my information was outdated. I had worked with patients at various ends of the spectrum, but it is so different when you are looking at your own child. The hopes and possibilities of their future begin to blur. I guess if you want to get honest, that really is how it is with all children and their futures. We really have no control over how their lives will be. There is just something so humbling about looking at my young son, who was then only 2.5 years old. He wasn’t talking, he wasn’t communicating, he had serious fits (beyond regular toddler tantrums), and he did all of these behaviors that I just didn’t understand. It felt like the uphill climb you take while raising your kids, just became a very steep and slippery hike. I had worked with families who received life-altering diagnoses. I knew that I wanted to be the type of a family that circles around my son and grows stronger while supporting him. You know, the kind of stories that you read about in Upworthy or The Mighty. The thing about striving for that, is that it takes a lot of work, a lot of faith, and an unwavering commitment to achieve it. I have come to realize that even then, there is no “happy ending.” We are just making that decision everyday to stay strong. It is out of this realization that I became my son’s advocate.
The road to advocacy
Over the last two years, I have done a lot of research, talked to therapists and special education teachers, read books, and participated with my son in a research study. All of this was in an effort to understand him so that I could understand his needs. The psychologist that diagnosed him prescribed for him ABA (Applied Behavior Analysis) therapy. Even though it is the most effective, evidenced-based treatment for Autism Spectrum Disorders, I have avoided it.
The reason I haven’t sought this treatment for him is because it is very expensive and my insurance doesn’t cover it. I was very shocked to find that out when my son was denied. For me, it was like denying anyone the medication or therapy that would help any diagnosis. The most simple way to explain this is to say that medical science is further ahead than the rest of the systems. Essentially, the laws need updating to include Autism. Most states have started recognizing that, and consequently, have passed laws to mandate the coverage.
Unfortunately, my state, Tennessee, is not among the 43 that have done this. I recently attended a conference about Autism Law, to learn more about advocating for these changes in my state. The insurance is just the starting point for a long list of needs for the Autistic community. It is a good place to start because if more children were diagnosed earlier and had access to these therapies, then they would be better prepared to enter schools in Kindergarten ready to learn. If they were able to learn language and social skills around the same time that their peers are naturally picking up on them, then they wouldn’t be as far behind other children in developing these skills. The goal isn’t to “cure” children of Autism, but to give them the opportunity to learn how to calm their minds so they can learn and express themselves.
So a year after I wrote my post about business trips for moms, I found myself on one to help myself, and other parents in my state, to advocate for our children. Of course, I still did manage to enjoy some of the things I mentioned from that post, because none of my children came with me!
What can you do to help?
Pay attention when you hear about these needs in your state by going to Autisim Speaks and sign up to receive emails. You can also inform others about the need and have them sign up as well. If you are in my state of Tennessee, feel free to contact me to get more involved in making this change. The truth is, everyone will be touched by someone on the Autism Spectrum. Your children will be in class with them, your coworker may be taking care of a family member on the spectrum, you will be among them in everyday society. You will be fortunate to know these remarkable people, so let’s help them and their families to get them the treatment they need. Then they can learn to share themselves with the world too.