Progress, Not Perfection

 This is our son, Ezra.  He's our second rainbow baby as well as our second, long awaited, much anticipated triumph over infertility.  Ezra is very much the third child, the baby in every sense of the word.  We still refer to him as The Toddler.  Or The Turdler, depending on the moment.  He's a month away from being 7.  Seven.  My BABY!  He's funny, sweet, imaginative and inquisitive.  He is positively brimming with personality.  Ezra hates--HATES--pants with a passion.  If it requires wearing pants, he's going to decline, thank you very much.  Gentle Baby is the balm (essential oil) which soothes his inner savage beast.  He has the most musical giggle you'll ever hear and he loves school (and loooovvvessss showing off what he's learning...) and speaks in a very matter-of-fact, pedantic manner.  His voice is the vocal equivalent of shrugging one's shoulders.  And he's constantly shrugging his proverbial shoulders at the world.  He loves fact-checking his Amazon Echo, always hoping to trip her up.  He loves his cat Dashiell, his mama, his dad and his brothers.  He's a sucker for back scratches, arm squeezes and the vestibular-regulating upside downs.  And cake.  This child liiiiiiives for cake.  And tacos!  My car magically transports us directly to Taco Bell at the mere mention of yummy tacos; Ezra knows this and does not hesitate to use it to his advantage.  Tuesday nights are for tacos, every Tuesday, and only tacos.  The dog annoys him, and Elijah has a real hate-on for him, though.  Ezra will tell you he's my love muffin and I'm his love llama.  Oh yeah, and I get to be his mama.

Ezra also has autism.  Even though he wasn't officially diagnosed until early 2021, I knew by the time he was a week old.  It sounds strange to a parent without experience with autism, but it was just so painfully obvious to me.  In many ways, he presented very similarly to Noah.  I looked at Shawn and said, "Well, here we go again!"  While I was pregnant with him, we often joked he was our Obi-Wan: Our only hope for a non-autistic child!  It was not meant to be and I would not change him.  Would I change things for him?  Absolutely.  But I would not change him.  When I recognized his many symptoms, I kind of figured at least we knew what to expect.  We made the choice to roll with it because really, the alternatives to not doing so flat out sucked and would've been counter-productive.  Ezra has been by far, our 'most' autistic child.  He had developed only a few words as a younger toddler, which he lost by 24 months.  There were also many missed milestones, in addition to a markable regression/loss of previously acquired skills.  Fortunately, we were able to obtain in-home early intervention services without an official diagnosis, with only a recommendation from our pediatrician.  Prior to those services at two and a half years old, he tested very high on the M-Chat-R (autism checklist for toddlers--if you have any questions, please ask.  If you have any concerns for your own child, I highly recommend this checklist and going immediately to your pediatrician.  Get on a waitlist for a diagnostic specialist NOW, they are often 18-24 months long); in other words, highly at risk for autism (it is important to note, the checklist is not a diagnostic tool, it can only speak to risk and possibilities).  After six months, he scored much lower on the checklist and we were discharged.  While it was exciting for us, and Ezra had made leaps and bounds throughout those six months, being discharged was also utterly terrifying.  I cried through the entire appointment, through the new checklist, the debrief and the goodbyes, completely unable to hold it all in, and I cried off and on throughout the week.  I'm a champion ugly crier.

As parents, we tend to doubt and second guess ourselves.  When you have a child with special/extra needs, those doubts increase tenfold.  Was discharging him really the right thing to do?  Could he make more progress if we were kept on longer?  You recognize the strides your child has made, but was it enough?  You're also able to appreciate how, with your own child moving on, room is made for the next child and family.  Your heart celebrates for that next family.  It's an incredibly emotional time, quite honestly.  It's a terrifying and exhilarating all at once.  There is the fear your child will regress (and at the time, your rational brain isn't working, so you fail to understand you can always go back if necessary), while your brain is also firing on all cylinders, celebrating the win.  You've also developed an often intense relationship with your therapists and specialists--they know the very deepest fears you hold for your child, they know your family inside and out, they've come to love your child and celebrate every achievement with you--in some ways, you're saying goodbye to a very dear, understanding friend and confidante.  You're saying goodbye to the person who joined you in advocation, the person who was in the trenches with you and your child.  There is a solidarity among therapists and specialists, and the children and families they treat.  So yes, it's emotional.  

We were fortunate enough to be able to return to OT when Ezra was four, again with only the referral from our pediatrician, pre-diagnosis.  I love this woman quite possibly more than life itself.  We've been with her for over 21 years.  She's incredible, and she fully acknowledges I know what I'm dealing with, so she just signs the referrals.  New parents--find yourselves a pediatrician who trusts you.  It makes an entire world's difference.  She also 'gets' our weird sense of humor, which is also very important!  Ezra had fallen behind in milestones again and we just needed to iron out some executive functioning difficulties he was also having.  We found an absolutely amazing therapy center and began our newest journey (local people, if you need a recommendation, please just ask, I'm happy to tell you who we used!).  

That was almost three years ago.  We lost a few months at the beginning of the pandemic when the center closed down, and we witnessed even more regression.  That was frightening.  We lost our two favorite OTs, but gained two more.  Ezra even learned to love the "new" Miss Mary, even though he continually reminded her each week, "You're NOT my Miss Mary."  (his Miss Mary is our beloved sitter)  That was also a little frightening... It could have gone either way!  The office moved to a new building (which made me laugh, given the majority of their clients have autism... if you know, you know) and Ezra handled the change beautifully with their help.  Week after week, I watched these women pour into my child as if he was their own.  Even the front desk staff is fully invested in their clients.  They helped him build daily life skills, social skills and coping mechanisms.  They helped Ezra learn to self-regulate, care for himself and advocate for his needs.  Together, we celebrated goals met and kept, had impromptu dance parties in the therapy room, made new goals and new friends, worked through meltdowns and shared hugs.  Our OTs worked in collaboration with Ezra's ABA therapist for the time we had her, and worked harder with him when we lost her.  Ezra continued to meet his goals, exceeding several of them, even without the added support of ABA.  

This week, Ezra was officially discharged from OT.  We discussed possibly making new goals, but it was determined he really does not need this support any longer!  We did a little happy dance around the therapy center, shared some hugs and slapped a few high-fives.  I was elated!  Ezra, his autism shining through, was completely unfazed and unimpressed.  He is unable to grasp the magnitude of the decision, only understanding he does not have to go back.  I know in my heart he's ready--Ezra is ready to take on the world without the continued support of OT.  This was the right thing and the right time to do it.  I have no misgivings.

To be clear, there are some things he will always have difficulty with, but that is just life with autism.  As it happens in even a neurotypical's life, there are ebbs and flows, stops and starts.  And that's okay.  We will deal with those as they happen and always work to help Ezra adjust.  There are some things no amount of any type of therapies will really help or reduce, and that is okay.  There are parts of him that will always be 'more' autistic than other parts of him.  And that is okay.  It's just how God made him, and he couldn't be more perfectly imperfect than he is. 

We called Shawn from the car with the news and planned celebratory ice cream for that evening.  No, not cake.  Yes, I probably owe him cake.

And then it hit me like a ton of bricks.  It was a like a freight train had slammed into my chest.

The gravity of this moment.  The full meaning of Ezra being ready to try life on his own.

The ugly tears.  

I tried so hard to hold them back because I did not want Ezra to think his success was a bad thing or I was sad.  Sometimes mamas cry happy tears.  It's just what we do.  My chest did that weird heave when the tears are trying to come out but you're holding them back with monumental effort.  I fought the battle and lost mightily.  So I tried to keep it them as quiet as possible, hoping he wouldn't hear over his chatter in the back seat, or notice the catch in my voice as I cheerily responded.  

There are times as we raise our children when our own feelings and thoughts are just monumentally overwhelming.  Recognizing how much progress Ezra has made since his very first combined OT/SLP appointment when he was two has been having that affect on me.  He has come SO FAR.  He has put in the work, and found his voice.  With the help of our support systems, we've slogged through some pure shit to be where he is today.  It has been amazing and beautiful and wonderful to have a front row seat to.  I am just so proud of my love muffin.

So if you need me over the next few days, I'll just be over here in the corner, ugly crying my heart out with absolute joy.