twenty-one.13

 s.i.x.

Unbelievably, this is the sixth World Down Syndrome Day we are celebrating as a family since Alex joined us.  I will never forget the first one; the one where you all bought hundreds of shirts, and you painted our community blue to show just how much love you all have for our man.  This was the first year we didn't have a new shirt made.  Tonight, Grant and I took a trip down memory lane digging through the multitudes of Down syndrome shirts we have.  We found one in the right size for everyone, and everyone will be sporting one from each of the years.  How cool is that?  We have had 5 different designs, and the 5 of us will each have one of those on.  Pretty fitting, I would say!

Why is March 21st such a day of celebration for us?  There are so many reasons to list!  The fact that Alex made it through conception to birth is a miracle.  That's definitely a reason to celebrate.  Most pregnancies with chromosomal abnormalities do not end up being viable pregnancies.  Alex was literally special from the very first moment.  The joy Alex brings to our family is a reason to celebrate.  I guarantee you there hasn't been a day in his life that he hasn't made us smile or laugh.  He has a gift to make others feel special, and it is something we all are extremely grateful for.  The amount of work the kid puts in daily is a reason to celebrate.  He has always had to work harder to learn and move about his world.  But, he puts in the extra work willingly, and therefore, he is developing in a beautiful way.

It has been one and a half years since I updated this blog.  I know when I first started it, I intended to update it frequently.  I almost found it therapeutic to me to make updates and to let you all know of our struggles or successes at that particular moment.  In the past year, I have found myself researching educational law in Illinois and the United States.  Specifically special education law in preschool.  There was a period of time, I could almost recite parts of the OSEP (Office of Special Education Programs) memo specifically related to least restrictive environments in early childhood education.  I won't bore you all with that though.  :)  I will say that it is important to never give up on your child.  If you know something isn't right, you must continue to advocate and to put the people in your corner you need to help fight the battle.  You only get to do the last year of preschool one time with your kid, and there is only one kindergarten and first grade, etc., etc.  I very vividly remember apologizing to Mr. Simpson, our Superintendent, for being "one of those parents".  His response was simple yet profound, "listen, I will never be upset with a parent who chooses to advocate for their child, who gives up their own time to spend learning about the law and then advocating."  Wouldn't it be a lovely world if all administrators thought like him?  Fortunately, in our school district, that is a common occurrence.  Thankfully, Alex has the best principal in all of the lands of principals standing in his corner with her gloves on ready to take whatever battle is next, too.  There were some unfortunate misunderstandings which prevented Alex from getting some of his services through our school district for a good part of this school year.  Thankfully, because of some very generous donors, and due to Mrs. Potter's ability to plan ahead; Alex didn't go without.  Not all kids will be as lucky as Alex, and that was certainly the message I left with his IEP team as we left the table the final time this year.  When this situation occurs again, because I know it will, please think about Alex and how he was affected by a misunderstanding of the law.  I hate that "law" could ever stand in the way of a child getting needed services, but that is the world we live in.

So, what does that all mean?

It means, Alex has been blessed to have a school year with his Miss Amy (Speech Therapist) and his Miss Katie (Occupational Therapist), and even more recently, he was joined again with Miss Lindsey (the school district Speech Therapist).  It goes without saying that he absolutely loves these three ladies.  He works hard for them (most days..hehe!), and they teach him so much.  These three ladies are a big reason for Alex's ability to communicate in a way that so many people are able to understand him.  While these three ladies spend a considerable amount of time with Alex each week, Miss Valerie gets him all the rest of the time.  She is literally a saint.  She was given to our family when Nora was a baby, and she just couldn't get rid of us.  She spent Alex's first years working with him to prepare him for preschool.  Then, she took the job at St. Joe knowing in just a few months after that, she would have him back.  She is the best teacher we could have ever asked for him.  I often say she knows Alex better than me.  It's true in many ways.  She has an incredible bond to Alex, and it shows in her natural way of caring for him while pushing him to be his best.  His cuteness only works for so long with Valerie because she knows of his potential and exactly what he is capable of!!  She has turned this kid into a wonder, and we will never be able to thank her enough.  

I can't not mention the amazing preschoolers at St. Joe.  They only know Alex for who he is.  His disability doesn't define him with them.  They know he is different, but they don't let that hold him back.  They encourage him, they love him, they show him the way, and they include him.  It really is a beautiful thing.  Alex is the star in the classroom in so many ways, but I really believe it is because he makes everyone feel like they are his friend.  Inclusion has always been something I have been incredibly passionate about.  I never knew it would be a life I would have to advocate so hard for my own child.  The hours spent in IEP meetings not giving up, not laying down and accepting status quo will never be forgotten.  Those hours are invaluable, and I very much hope they help kids after Alex, too.  That's why our family will never stop.  We work for Alex and all of the Alexes after him.  

Thank you for joining us in the beautiful celebration on March 21st.  Thank you for recognizing the differences in all of us and the importance of inclusion.  We will continue to make March 21st a day we look forward to, a day we get excited about, and a day we reflect on all the ways you have held us up and encouraged us.  

Finally...last week, I got the picture below from a before-school encounter.  Alex and his 3rd cousin Grace were walking to their classroom together.  Can you imagine the conversation that led to these beautiful looks?  Grace is one of Alex's biggest supporters, and I know she will always be near helping me fight the inclusion fight.  You guys, this is the future we have to look forward to.  It sure makes me smile.  I hope it does you, too.  What have you done to include someone with different abilities?  Now is your chance to be like Grace!

From the St. Joe halls