Dear Addie,
You're officially a month and some change in your 7th year of life, so staying true to our fashionably late form, it was time for your annual doctors well visit.
Now this year was a little different than years past because we had a joined a new practice that was recommended within our autism community. This new practice is known for being more accustomed to caring for autistic patients such as yourself. All good stuff to us! Let’s do this!
It’s no secret doctors’ offices are not exactly your favorite place to be. So being predictable in your coping with such anxiety right on cue pulling into the parking lot you began your rendition of sobbing nursery rhythms. It’s not exactly Grammy-worthy, but it does sound better than straight up crying and screaming. Now this being our first visit here was taking a little longer and required a bit more of a “get to know you” session about our life. So not to disappoint our new-found Pediatrician and staff, you sobbingly sang your nursery rhythms THE WHOLE TIME – just shy of an hour from start to finish! A few nurses even appeased us commenting on what a lovely voice you had.
After a successful physical exam, the 800th round of sobbing itsy-bitsy spider, the predictable light-hearted comments about not getting your height from me, a laundry list of questions related to diet, activity, behavior, therapy and so on, he asked: “How is her relationship with her siblings?” I, of course, replied “Great!” then he asked, “How are they handling the challenges that come with being in such a special family?” I paused for a minute, I think I was taken a little off guard by the question, but grateful nonetheless he was interested in the whole health of the family dynamic. Feeling like I had delayed my response too long I quickly replied, “Oh yes, very well” and with that, we were done.
So, now with the growth chart, you’re not on in hand, and doctor visit done, we were headed off to get a celebratory cheeseburger from Wendy’s. Yay Addie!
Very pleased with how this doctor visit had gone for you, I found myself somewhat unexpectedly thinking of Clara and Gabe. That question the doctor had asked seemed to be sticking in my mind, for I had never really checked in or asked them what they thought of this special family and the challenges it can present. You see Addie, as much as I don’t know what it’s like to be autistic, I also have no first-hand experience in what it’s like to have an autistic sister like them. I only have a ticket to a front row seat as we watch these relationships unfolds. A good reminder that this journey is indeed about ALL of us. One team, one dream.
As much as your life can be different, for example, your playdates involve a fine motor skills game with your occupational therapist rather than that of a friend from school, it’s also different for Clara and Gabe than that of their peers.
They do homework in waiting rooms often, have missed out or been rushed through events and festivals trying to avoid potential sensory meltdown, have spent hours in the car over flying for trips because anxiety would be at a minimum, have been on the receiving end of my short responses during stressful times (not my finer moments), they’ve grown accustomed to a life that’s just plain for lack of a better word loud. For as much as they are still children - they worry like that of a parent with your adventurous spirit and the fear that's associated with it. They anticipate your needs but can also take an unexpected Mike Tyson punch from sounds that may upset you. For as much as we do try to do, there’s plenty we don’t do. People may also look to them for some deep expert answer about what autism is and what it’s like to be in an autism family – but they won't really have an in-depth answer to give. This is not because they don't understand their life but because to them it’s their everyday normal, and not many people find themselves having to explain their “normal” to people – they just live it. They will surely find themselves at the forefront of unwelcomed comments or lingering stares if not already one day - this may bring along a natural reaction of feeling anger or embarrassment. They may also feel jealous at the attention they are not getting because the reality is you have more needs – but they will never admit feeling as such. They notice every time I may be running out of steam and always ask what they can do to help – because that’s the type of kids they are.
So why did the doctor ask this? Because it's an all too common thing for special needs siblings to feel left out within their own family and seek validation through other means like acting out or overachieving perhaps even showing resentment towards their sibling that needs more from mom and dad. Adding another dimension of complexity to what an already complex life can be.
While yes there’s no denying our differences and the challenges we have, it is so much more than that.
Here’s the thing Ad, you hit the jackpot on siblings! They are the most unbelievably empathetic, loving, funny, compassionate and kindest kids you will ever meet. A beautiful example of just how to be. They see the good in everyone. And have found a beautiful friendship with each other and together have created this extraordinary relationship and bond with you. There’s a lot of awesomeness that comes with being in a special family too!
With all the challenges and awesomeness let us not forget, there is love. Endless unconditional love.
So, after much reflection on that doctor’s question, I’d still say “yes” they are handling the challenges of being in a special family amazingly well because at the end of the day the love and joy you all genuinely have for one another outweigh any challenges presented.
There’s a very famous quote that says…
“Challenges are what makes life interesting. Overcoming them is what makes life meaningful.” ~Joshua J Marine.
A meaningful life, I like the sounds of that.
I love you all.
Love,
Mom
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