Dear Addie,
“Your child has autism.”
Words I will never forget, and thanks to the movie Rainman my uneducated vision of Dustin Hoffman’s character was stuck in my head. If I’m being honest, this journey is not for the weak. But I do believe that no one knows how strong they really are until they are walking blindly, barefoot, on a rocky road to somewhere, but they don’t know where. Everyone has a journey, a story, their own book of life. Ours is autism, and while the road we may all travel looks different, we all pull deep from within for that strength to keep moving, to keep looking for the calm, the peace, the light. While in our toughest of times we may feel every ounce of alone trying to pull out this super strength out from the abyss, we are not in fact alone. There are people placed along our paths to guide us when we need light the most.
When you become a parent you’re clueless. It’s true - well I guess I can only speak for myself. Addie I went into labor with Clara in our birthing class. Yep, didn’t even make it through the whole day! You can read a thousand books, and take a thousand classes, but as soon as you are holding your sweet baby in your arms - it all changes. All of a sudden all that stored up knowledge you gained reading and researching is being translated into gibberish in your head. You feel this overwhelming flood of love for someone you literally just met - so much so that you cry, but you also then realize this little precious bundle is relying on you for survival, for you to teach them how to be a contributing good person in this world, to potentially be the next President of the United States! Hey, ya never know. It’s scary. Insert your first taste of parental anxiety and fear. You might cry here too.
There’s a lot of tears in parenthood.
Don’t worry there’s good news!
That doubt fades a bit more and more everyday. You eventually find your groove and before you know it, you start to realize you totally got this! You’ll get into a routine and your perfect little family is just moving along enjoying life. You discover your normal.
While you’re just normaling (totally made up that word) along, you’ll welcome everyone’s first realm of the dreaded comparison game (whether anyone admits it or not) with the start of play dates. Play dates were not new for us once you joined our OTOD, having had two kids I thought we’d pretty much mastered the art of playing. Playdoh anyone? But with you I started to notice small differences between you and others your age, trying not to read to much into it, I simply kept reminding myself everyone develops at their own rate...right?!
Shaking off any doubt, anxiety or fear of thinking our parenting skills had gone awry after three kids, we’d continue on, ya’ know — normaling. That is until a routine well visit with our pediatrician left us realizing those “differences” were not something that should be ignored. The developmental milestone chart would make its ugly debut and a new reality was about to slap us in the face. For the record, I hate those charts Addie. What I saw, the play date comparison game I fell into, was real and now needed to be addressed.
This right here, felt like failure on my part. You weren’t talking and it was because of me. You didn’t understand how to play with others, and it was because of me. You couldn’t drink out of a cup - you get the point. That devilish doubt was now sitting on my shoulders. As your parent I was somehow officially convinced we had failed you, our sweet, innocent, baby girl. How did this happen?! For the record, getting a referral for someone to evaluate your child who’s not meeting milestones feels like someone writing your name up on the chalkboard in third grade. Like I was in trouble for something. I know dumb right.
After evaluations, referrals and more evaluations our journey started to take shape and even got an official title - autism. The wealth of information that comes into play at this point is nothing short of overwhelming! It’s here that we realized we might be over our head and felt super overwhelmed, confused, dare I say depressed walking that rocky road. But... there were people who could help. In fact they made it their life’s work to help, the introduction of therapists were about to take their place in our journey.
Addie there are therapist for truly everything and we’ve had our fair share. Occupational, physical, behavioral, speech, music, the list goes on and on - you name it, there’s probably someone who specializes in whatever anyone could think of. As a parent of a child who requires such services and additional support from these lovely people, they in turn become an extension of our families. We trust our most precious gifts to them and that doesn’t come lightly. *For the record I feel the same way about teachers.
In our case, what I’ve found most often is these therapists few and far between have an actual direct connection to the special needs community, which for whatever reason always surprises me. Remember my favorite poem “Welcome to Holland?” Well, these beautiful people choose their life’s work right here in Holland, instead of sightseeing down the canals of Venice. That’s pretty awesome Addie.
For you my sweet girl, occupational therapy has been our home away from home since you were diagnosed. It’s here that you get assistance in building skills in the areas needed to complete daily activities like brushing your teeth, dressing, handwriting, holding and feeding with utensils, pedaling a bike, engaging in social play with others and more. Some not familiar with our journey, and might think these are all things parents should be able to teach their kids on their own. While that might be true to an outsider and maybe we look like we are passing off raising the next President to someone else, but if there was an autism manual somewhere it’s surely written in a language we don’t understand and even if we could decode such a language, would we be too late in our “window of opportunity” to get you help? Early intervention is key after-all. That’s right up there with the exposure advice Ad... you hear it over and over again. When it comes to therapy there is 100% no one size fits all therapy to help everyone on the spectrum. There is a lot of trial and error!
Just like where it all began, this trial and error can leave you feeling confused, but the pieces eventually fall into place and you find your groove again, only now with added players along the way. Welcome to the Dream Team!
It is in this groove that we met Jordan - your Occupational Therapist.
Young, spunky, fun and doesn’t flinch when you scream at her. Score! She was born to do this job! She seems truly invested in your success as if you were her own (or at least if feels that way to me) and that is really every special needs parents dream! Someone as dedicated to their child as the parents. Setting up goals, celebrating your accomplishments, working through challenges, the ups, the downs, the good and bad - she’s there for it all. She’s sees it all. She has been our eyes when we have felt blinded, educating us along the way.
Life lessons Ad, everyone you meet is a teacher. We never stop learning not even at mommy’s age (or even daddy’s age... woh!).
There is only one thing wrong with these beloved therapists (in my opinion,) they eventually leave. It’s true, they have their own life’s journey and no matter how hard we try, we don’t get to keep them forever (even if we beg!).
Our Jordan is leaving. Her life’s journey is leading her on to new places, not from the industry, but within the country.
While we are sad that she is leaving us, she will always have a memorable spot on our journey, being forever woven into our dream team, being there for us when we needed her to be. With our sadness also comes joy and excitement (and maybe jealousy) for others that will get to feel the love and joy that we have been so blessed with while she had been here with us.
We are all anxious for this next adjustment (that’s a given with any change) and I know you don’t see it, like it or maybe understand it yet, but change is good. I promise. You’re making great progress and we will work through this and be in a new groove in no time.
“Don’t cry because it’s over, smile because it happened.” Dr. Seuss
Love,
Mom
Comments