Our youngest son was diagnosed with autism so early that I can hardly remember a life before it. While the memories seem spotty, the feelings certainly don’t. Those feelings are still raw and real. And to the momma who suspects something is different or whose child was recently diagnosed, here’s what I wish I knew then as a mom of a kid with autism.
You’re Not Alone
Feelings of loneliness can certainly creep in. Remember, feelings are not always facts. Just because you feel lonely, doesn’t always mean you are alone. Friendships might shift. Family dynamics might become more complicated. But I promise you that based on sheer numbers alone, there are other families whose stories will resonate with yours. It might be helpful to get to know other families who are navigating an autism diagnosis also.
Check out the Ausome Moms Facebook group. These DFW moms are welcoming and honest about all the choices parents of special needs children have to consider. From recommendations about school districts, to therapy centers and doctor’s offices, this local mom group has served as a special place for me.
A School Diagnosis Is NOT the Same as a Medical Diagnosis
I learned quickly that an evaluation performed by your local public school district does not carry the same weight as a diagnosis from a medical professional in the community. And depending on the kinds of services you want your child to have access to, this information is important. An evaluation by a developmental pediatrician or psychologist is the first step if you hope to begin ABA therapy. Some families choose to pursue services from their local public school district where eligible students can qualify as young as three years old.
Be Ready to Wait. And Wait.
I remember feeling defeated when I realized that just because we had a medical diagnosis at 22 months, didn’t necessarily mean we could start therapies immediately. Some of these waitlists are long, especially at places whose services come highly recommended. And this is just as true for school evaluations. Parents oftentimes are surprised to know that schools operate from a timeline that can stretch almost an entire school year. I recommend contacting the school district six months before their third birthday to ask about the evaluation process.
Insurance Companies are For-Profit Businesses
Start to become familiar with your insurance coverage. I remember believing that insurance companies existed to just help families. I think they can help, but I also know they generate lots of profit. Not all insurance plans are autism-friendly, and the insurance loopholes are aplenty. We ran into some really complicated insurance coverage gaps because of factors like where the therapy company headquarters were located and the difference between self-funded plans vs. fully-insured plans.
We were devastated to learn that my husband’s very large and highly profitable company did not include coverage for autism-specific therapies. I was also angry. My husband and a group of his colleagues formed an advocacy group to bring awareness to their workplace. Through their efforts and some guidance from Autism Speaks, a national autism organization, the company made sure to include autism-friendly benefits the following year.
Advocating Does Not Mean Complaining
You’re allowed to complain. And I would encourage you to find the people in your life to whom you feel safe venting your frustrations. But remember that advocating is not the same thing as complaining. Most children with autism will enter school, whether it’s public, private, or charter, and no matter the age of your child, I’d encourage you to start to become familiar with acronyms like IEP, ARD, and 504. Read all of the paperwork and ask all of the questions you have. Advocacy comes from a place of understanding. You can’t advocate what you don’t understand.
Not sure where to start your advocacy journey? Navigate Life Texas is a great resource to consider.
Not Everyone Understands—That’s Ok
You will encounter people who will mistake your child’s sensory overload as misbehavior. You might feel judged by parents at the playground when your child abruptly cuts in line or grabs a toy from someone’s hands. People in your life might not get your level of excitement when your child says a word, eats a different food, or tries something new for the first time. Honestly, I don’t think I did either until my son was diagnosed. Recognize that although we are starting to have more conversations about neurodiversity, some people still don’t get it.
Actually Take Care of Yourself
If there’s one thing that has helped me the most as a mom to a child with special needs, it is recognizing that I’m more than just a mom to a child with special needs. I’m a mom to two other children also, each with their own strengths and challenges. Titles like wife and friend still matter to me. Most days I really love working and learning. I’m still the person who loves most of the Housewives series on Bravo. The parts of me that love connecting with people, traveling and being creative—those parts of me still matter. In whatever way makes sense in your life, don’t forget to take care of yourself.
Parenting is hard, and parenting a child with special needs is sometimes harder. To the momma just starting on this journey, I wish I could hug you. I would never tell you that things are going to be ok, because I have no idea how this will play out. Instead, I’d tell you that in your darkest, heaviest moments, remember that feelings are temporary. I’d tell you to stand firm in the belief that even when things are not going ok, you have the ability to figure it out, sometimes just one day at a time.