Twenty-one.9

 2 months.

Yesterday during a Developmental Therapy Session, Alex's therapist (the awesome Jamie) said just 2 more months before this guy turns 3.  Yeah, I knew it was coming.  I have been thinking about it so much.  But, for some reason when she said it, it was real.  Last night, when everyone in the house was asleep, and I had a rare moment of quiet, I sat on the couch and burst into tears.  Don't all moms do that when they realize their baby will be 3 in 2 months?  No?  Probably not.  I certainly didn't with the other two kids.  Thinking about their birthday 2 months before the day is really nothing this "fly by the seat of your pants" mom ever considered.  That was until this date became so important.  I'm sure you all remember the days I have asked you to pray and think about how we can make a change in the way children age out of Early Intervention.  The program which provides the amazing therapies Alex receives.  Well, in 2 months, Alex will be 3, and nothing has changed.  But, it isn't because I haven't tried.  I have sent e-mails and letters, and made calls, and sent Facebook messages.  While it seems it has fallen on deaf ears, and Alex won't benefit from this change, I won't stop fighting.  When I think my steam has run out, something reminds me that tomorrow and 2 years from now there will be another Alex.  But, in the meantime, I have to get this boy prepared for SCHOOL!

So, you might be asking what that will look like.  Sometimes, I wonder too.  We have an amazing team who has gathered once to discuss a plan.  And, soon, we will meet again.  Only this time, a new set of therapists who have never met Alex will evaluate him.  That scares the hell out of me.  They haven't been able to see how hard this boy works.  They don't know where he has been and what he has done to be where he is today.  They may not look past his flaws to his giant heart.  We start over.  This wouldn't be so hard if we hadn't been blessed with the very best therapists who love our Alex as much as we do.  They have done everything they can despite COVID-19 to make our boy be ready for school.  They send me messages like, "he is a model student," "I love any session with Alex," "he just makes my day."  They have this deep relationship with him--and he knows it.  He will do things for them because they love him and he loves them back.  He works his butt off for them.  And, they give him the most unconditional love.  I'm worried the new therapists will be too busy to love our boy like this.  I'm worried that they will think he is "okay" for a kid with Down Syndrome and doesn't need to be challenged the way the ladies do now.  These are all very unnecessary fears, but they are the reason I wake up at 1:30 in the middle of the night and can't go back to sleep.  

We have decided to not start school on November 9th because in whose world is that "normal"?  Alex will begin school after Christmas vacation in January.  He will begin his day at the Elementary School in an Early Childhood Classroom where he will be able to also receive some therapies.  He will then be bused to St. Joe for afternoon pre-school.  You see, his favorite person in the whole-wide world, Miss Valerie, is a teacher at St. Joe.  And, his big sister and brother go there.  I want Alex to attend the same school as his siblings.  I want him to run into them in the halls.  I want them to be there to protect him, to give him hugs when he needs it.  I want his natural supports to be present.  My goal is for him to be functioning at a level by the time he reaches Kindergarten that he can attend St. Joe 100%.  That might be a lofty goal, but I know he can do it!  

Alex's team to start this transition work is comprised of his family, his new principal at St. Joe who also happens to be my first cousin (once removed) and is truly an advocate for him, our neighbor across the street who doubles as the Special Ed Coordinator, and a dear friend of mine who is a past co-worker.  Living in a small town definitely has its advantages.  Who else could say that about their team?  The first meeting at the end of this month is so crucial.  We will already be paving the way for Alex to do his own self-advocacy work.  We will set the bar for how future meetings go.  We are entering this arena I never dreamed our family would be in.  And, we will be playing in the arena for a LONG TIME.  Like 18 years!!!  So, the things we do in the next 2 months are crucial!  But, I must remember this is a marathon not a sprint.  

It reminds me of a dream I recently had.  My family laughs at me when I talk about it.  I woke up with tears running down my face and shaking.  Now that I think about it, I realize it was silly.  And, clearly just a dream.  But, I dreamt that I went to register Alex for the Olney Little League, and they told me he couldn't participate because he had Down Syndrome.  I started screaming at them and told them they couldn't exclude a kid because of a disability.  I really don't think this will ever happen to us.  I certainly hope it doesn't.  But, today, Miss Jamie sent me a video of Alex playing soccer during therapy.  She said, "you must sign this boy up for soccer!"  He just learned how to kick a ball last week, and already someone thinks he should play soccer.  Yep!  He will do exactly the things his big sister and big brother do.  I know it.

In 2 short months, Alex will age out of the program which gave him the brightest beginning we could have ever hoped for.  We will blow kisses (covid style) to the therapists who have loved us even when it was ugly.  We will continue on this journey.  And, you will be introduced to Alexander the Great, Self-Advocate.  Just another notch in his belt and feather in his hat.  

As Alex always does, please remember to love BIG, smile often and dance like no one is watching!

Preparation for school means we learn things like cutting!  And, big brother is never too far away!  Here Alex is with Miss Jamie, his developmental therapist.  He also participates in Physical Therapy, Speech Therapy and Occupational Therapy.  He has 7 hours of therapy per week!  That's a lot for a growing boy!!