As my 5 year old son and I walked out of gymnastics last night where he takes a private 1/2 hr class, it was cold, damp and a bit windy in the looming dusk. Freezing, I excitedly said “Let’s run to the car Leo!” and took off gripping his hand tightly. Beside me, I heard this stilted little voice say, “Let’s run…..fast.” “Fast.” I glanced down in surprise to see a slight smile gracing Leo’s lips as his messy mop of wavy hair is blown back to reveal his pretty features on his sweet face. (Almost too pretty for a boy, we often joke.) And so we ran fast to the car, holding hands, laughing all the way.
I’ll cherish that moment because while it’s a simple story to share, the significance of hearing Leo respond to me showing he comprehended what I asked and then followed through with the suggestion is certainly wonderful. That he added the word “fast” (twice!) is HUGE in the communication department!
It’s moments like that where I’m reminded I was meant for this hectic, sometimes overwhelming but highly rewarding life. I was meant to be an autism mom. You may even be shocked to hear, but I actually revel in it these days. Autism doesn’t frighten me anymore. Autism doesn’t make me sad. I’m done grieving. In all honesty, when you stop and think about it, autism is pretty darn fascinating. Of course, there are hard and frustrating moments, but the joyous moments are greater. There are still meltdowns, but happy and content are more the norm. I’ve gotten used to their exuberant noise and embrace it. Silence is over-rated anyway. Meeting milestones are cause for celebration and delays make us work all the harder. We’ve become a well-oiled team in our house and there’s not a lot of guess work anymore with what works and what doesn’t with our four kids who have autism.
It wasn’t always like that for me. When my 18 year old twin boys were diagnosed all those years ago with autism, I was devastated, angry…and a bit bitter. I didn’t want to be an autism mom. That was not what I signed up to deal with at all. I wanted someone or something to blame for stealing my boys’ smiles, speech and outgoing personality. But after getting over the initial blow, I jumped in with both feet, determined we were going to help them achieve their highest potential. Of course, back then the only things I knew about autism was from a few internet searches and from the movie Rain Man, and that was definitely not a good model of autism to predict the future capabilities of either boy.
I’ve earned many titles over the years as I took on many roles for my kids. I became a strong advocate, a novice therapist; learning tricks of the trades of speech, occupational, developmental and physical therapies, a feeding specialist, a nurse, a negotiator, an arbitrator, a teacher and a protector from the bullies. I learned to juggle our time and coordinate a crazy busy schedule packed with developmental preschools, regular schools and therapies. My kids work challenging full time jobs learning how to talk, socialize, process and regulate their senses and coexist in a oftentimes confusing world. With the help of resource and special education teachers, we became proficient in balancing academics, homework load and down time as the twins moved through each grade at school.
I’d say I’m kinda like a wedding planner coordinating and assisting all aspects of a big grand ceremony.
I also fostered interests, collections and obsessions because whatever brought them joy brought me joy. I’ve bought books, boardgames, fidget toys that were stretchy of every color or texture, Thomas The Tank Engine stuff, iPads, Barney galore, coins, puzzles, computer and video games, Hot Wheels, and hoards of stuffed animals including a big quite real looking hairy tarantula puppet that actually gives me chills (ick).
I’m sure I made some mistakes over the years and possibly missed or ignored some ground breaking therapies to try, but as I look at my 18 year old twin sons, who have autism, I’m in awe. To have come so far from their premature birth, major developmental delays and autism diagnosis to graduating from high school this June and heading to college in the fall, I know we did something right. My husband and I are so proud of their hard earned accomplishments. We rocked their autism as a team and I believe they’ll continue to blow statistics out of the water with their successes as time goes by.
We are also forging forward with a new version of autism or as we call it autism enhanced with Down syndrome with our daughter, Lily. While suspicious she had autistic traits (Down syndrome and autism can both have sensory processing and communication issues), we didn’t push for a formal dual diagnosis until recently. At 11 years old, we are using our autism knowledge to tweak her therapies and her needs because I’ve noticed with her dual diagnosis that Down syndrome is currently taking a back seat to the autism. I’m grateful for my experience with the twins because that experience has guided me in supporting Lily more effectively as well as helped us in understanding some of her behaviors better. Since she’s not able to communicate very well or learn in the same way as the twins, it’s nice to have that prior knowledge as we map out a plan to meet her highest needs right now so she too can achieve her level of success with her level of abilities in every aspect of her life. We’re simply gonna dazzle her dual diagnoses with everything we’ve got in our autism toolbox.
Finally, we’re getting a fourth chance to rock autism all over again with Leo, who is our youngest. In some ways he’s similar to his older brothers, but in other ways he’s completely different, so comparing isn’t always an option or a wise thing to do. There’s also newer therapies and different techniques to try. Treatments and therapies are always changing or evolving similarly to the way individuals with autism change and evolve, but for us the stakes are the same. We’re going to help Leo achieve his greatest potential whatever that may be and enjoy watching him bloom.
Bottom line: I love being an autism mom and frankly, I know I’m good at it.
I’m a stay at home mama to 7 uniquely enhanced kids, married to my high school sweetheart for over 24 years. Down syndrome, autism, ADHD & adoption make my world go ’round and I’m sharing our version of normal.