twenty-one.10

 THREE!

Alexander turned three in November.  As you know from my previous post, this means he aged out of the State of Illinois Early Intervention Program.  The program which introduced us to the most beautiful ladies who delivered the most amazing therapy to our Alex.  On his third birthday, the 7 (yes SEVEN) hours of therapy Alex received per week ended.  Just like that, it was all over.  Because of COVID, those therapy sessions were still happening via ZOOM or in a very safe manner (usually outdoors).  We were unable to have a "traditional" exit meeting to discuss Alex's progress and just how far we have come.  We were unable to hug those ladies who brought us so far and made such a difference.  But, we did meet them at the park and enjoyed a socially distanced play date so we could give them a good-bye/thank you gift.  Those ladies have become a part of our family, and my goodness do we miss them, their love and their beauty.  Every day we miss them.

As I am sure you remember from an earlier post, when Alex aged out of Early Intervention, I had this great plan for what the school-day would look like for our sweet boy.  I just knew he would be able to attend the public school where his therapy would continue and would be delivered to him in a similarly beautiful way.  I knew St. Joe would allow him to learn alongside their students where he would be able to see his brother and sister at school and learn about the love of Jesus Christ.  I just knew MY plan would be executed without any problem and therapy life would continue for our Alex making him the strongest young man who would be more than prepared for Kindergarten when the time came.

What I didn't know was that I would be thrown the biggest curve ball of my life at Alexander's first IEP (Individualized Education Program) Meeting.  In the weeks prior to the IEP Meeting, Alex went to the elementary school where he was evaluated by a group of therapists from SESE (Southeastern Special Education).  These therapists used a play-based evaluation tool and had Alex perform many tasks which he had been completing for his EI therapists.  In typical Alex fashion, he won the hearts of these therapists over by his charming personality and everlasting smile.  Alex communicates well using some words, some sign language, some gestures, and some pointing and grunting.  He is also a master at blowing kisses!  Because of the amazing therapy he received from his EI therapists, Alex performed very well during these evaluations.  We always knew he was bright and would do well.  The curve ball I never expected was that the results from these evaluations indicated Alex does not have a developmental delay.  During the IEP Meeting, each therapist gave their report letting us know the results from their evaluation, each saying how well he did.  I sat in the conference room beaming with pride for my sweet boy.  He had knocked it out of the park.  Only, this isn't really a park you want to knock it out of.  Because he had done so well, they were telling me that Alex's deficits were not great enough to qualify for special needs services in a preschool setting.  When they finally said it to me in those words, I understood what was happening.  Everything Alex has worked so hard for is being stripped away from him.  Because they say he is "average", he will no longer be eligible for services which would continue to push him to be the very best he can be.  I do not want this false understanding of "average" to make you think that Alex is a typical 3 year-old speaking in sentences, potty trained, walking up steps, catching balls, etc.  He is FAR from those things.  It is okay for reality to be real sometimes.  It is okay to say, "Alex's family and his therapists have done a terrific job getting him to this point, but there are still some major deficits we need to work on.  After all, we wouldn't want a kid to fall behind."  That would be okay with this mom.  But, unfortunately, the education system in the State of Illinois isn't set up that way.  Instead, we let a play-based evaluation system determine that RIGHT NOW a child is not too far behind, and he will not get the necessary services he deserves until he falls behind.  That is what I was told.  When Alex starts showing greater delays, we can have him reassessed.  What this mom hears is..."we will let him get behind, and then we get him the help he needs."  What this mom wants is...an education system which provides a preventative therapy model to children who are hovering near a delay.  But, we aren't there.  So....

I walked out to my car that day with my head in between my legs.  Completely baffled and defeated.  I was too upset to cry.  But, I knew I had to find a solution because January would be here soon, and I wanted Alex to start school when school resumed after the Christmas break.  I looked at Mrs. Potter who attended the meeting with me and asked what could we do.  She said we would figure this out.  And, that is what happened.  I made a lot of phone calls, I thought outside the box, I prayed, I listened.  I called an incredible woman I met at a Down Syndrome conference in Chicago right after Alex was born.  She is a GIFT.  She works for a Catholic organization who encourages children with disabilities to be educated in the private school setting.  She told me this wasn't the end of the world.  She told me there was probably a reason this happened, and that we just needed to figure it out.  The truth is, we don't have it ALL figured out yet.  But, Alex is attending St. Joseph Preschool with our beloved Valerie every day.  He has been welcomed into a program with extended arms and LOTS of LOVE!  He is the recipient of the actions of children who are taught to walk and live like Jesus.  

I called Mrs. Potter on Tuesday evening to say thank you.  I broke into an uncontrollable cry recounting an episode I happened to witness on the playground that day when I went to check in.  Do you remember the nurse named Sallie from the Operating Room the day Alex was born?  How I thought she was an angel?  And I determined she really is an angel on earth?  Well, Sallie's daughter is in Alex's class.  And, she is the most naturally loving child I have ever met.  She could teach a class on inclusion.  I saw this sweet child helping Alex on the playground, encouraging him, physically giving him a boost when he needed it, loving him and playing WITH him.  She didn't even think about the fact that Alex was different than her, she just did it.  Valerie told me that at one point in the day she asked how old Alex was.  When Valerie told her 3, just like you, she said, "Oh, he is just kind of short."  She didn't say anything about his inabilities.  Because this amazing little girl sees Alex for who he is.  She loves him and he loves her back.  And, this, folks happened in all of about 2 hours.  That's because God has everything to do with how Alex was assessed.  This is because God put Sallie and her sweet little girl into our lives for a reason.  I will never understand all that is happening in us and through us, but one thing I will know is that we shouldn't question, we should just show appreciation.  

So, today, I am thankful for a beautiful school with a principal and a teacher willing to think outside the box with me.  I am thankful for a little girl who can show her love so beautifully.  I am thankful for a big brother and big sister who will fight for their baby brother.  For a big sister who knows exactly what the plan is, and can explain it to a bus driver, a school administrator and me.  I am thankful for the littlest advocates with the biggest hearts.  I am thankful that Sallie's huge heart was given to her daughter.  

I am thankful for a community of people who never stop showing up and loving our family.