Talk About It (Deer Park, WI)

October has come and gone.  Years ago I may have focused each day on talking about Down syndrome because October has been dedicated as Down syndrome Awareness Month.  Honestly, those “dedicated” months mean very little to me.  They take something personal and make it a holiday, or a Hallmark celebration anyways.  And, they have a month for everything.  Every single thing.  It takes away from the meaningful things, doesn’t it?

This awareness month is all fun and everything and it is in fact a great time to share facts and experiences related to Down syndrome.  I respect that and those who make that effort.  Who spend their time and energy advocating for our children.

Maybe I failed in that aspect.  Maybe I have been failing.  I don’t know.  It is as though I’ve moved on.  For the most part.  And, that is not actually failure, but I realize I am missing moments, too.  However, at the same time, I have moments in my every day when I can be that advocate.

For example, when conversing with an acquaintance at a wedding I was photographing, he asked about the kinds of Down syndrome.  He was honestly wanting to understand, which unlike some parents, did not bother me at all.  It did not bother me that he thought there were different kinds of this diagnosis.  Honestly, how can we be upset with people for having misperceptions or misinformation when it is not their fault AND they make an effort to learn?  I commend that!  I think this is one thing I have noticed in the past 4 years since Calvin has come to be.

I notice that some people want others to understand and empathize so much that they become frustrated,  angry,  and annoyed when people don’t understand or empathize.  Hell, I was one of them in the beginning.  Since then I have caught my way of thinking and have been blessed to take a step back and really see these situations for what they are:  People who trust me enough feel comfortable enough asking or saying things to me, in kind ways.  Or, for those who make assumptions and judgments, they are simply people who lack the experience and the realization that they experience faulty thoughts or feelings.

So, that wedding moment was a blessing because I could explain that yes, there are 3 different genetic types of Down syndrome, but the rest is just what it is and from my experience and learning, most of it can be due to co-existing diagnoses or disorders.  Take for example a child with Down syndrome who has a seizure disorder or Autism or Leukemia, etc.  These children are medically on a different level than a child with Down syndrome only.  Does that even make sense?  Because of Down syndrome, our children are more likely to face other struggles, but that is not Down syndrome in and of itself.

Now, intellectually, there are varying levels of intelligence just as there are in the population of us who have the typical number of chromosomes.  The end.  I’m not sure what else there is to say to all of that except that as a parent of a child with Down syndrome, I am not going to get upset if someone innocently does not understand Down syndrome.  I didn’t 5 years ago, so how can I throw stones or point out someone else’s log in their eye when I live in a glass house or have a log in my own eye – you know how that goes!

I have learned a lot about Down syndrome.  Not everything.  Not even close.  And, I hope that everyone feels comfortable coming to me with questions, even ones that might logically answer themselves.

And here’s a hint about my answers to most questions: They are most likely going to sound a lot like what you would hear if he didn’t have Down syndrome.  That is what I’ve learned.  Life is normal, average around here.  I think that is why I do not talk as much about it any more.

So, as I wrap up, I thought I’d shortly update you about Calvin.  Calvin is a little over 4 years old.  He is in Early Childhood Special Education.  Next year he might be ready for 4K, and he is going whether he is ready or not.  I will admit, this is something I’ve had to accept because this momma wants him to be ready in a typical sort of way because that is what she knows and understands.   You know, they should know their ABC’s and be able to count to 10 kind of ready.  This is a new territory for me.  So, instead of worry and upset, I pray to just settle down and accept Calvin as he is academically, intellectually.

Calvin has a handful or three or four of some words.  He picks up signs quickly.  It is amazing!  He is a good copycat!  He calls me Mom and Joe is Dad but he only has one other person named, Nolan.  I am tearing up here because what is flashing through my mind is all those old posts from when Calvin was a baby.  Who was with Calvin in those photos and stories?  Nolan.  When Nolan wakes up in the morning, Calvin notices.  He notices Nolan and that sweet little 6 year old is an important part of Calvin’s story.  Calvin calls him “A-la”.  Not quite close to Nolan, but once we realized he was labeling Nolan we noticed how often he talks to and about “A-la”.  Sometimes it is even with concern.  Like he is telling me what A-la is doing.

Calvin is not potty-trained yet.  I have learned to trust my instincts over the past handful of years and my instincts are just not quite there with training.  I’m re-assessing a lot.  I’m hoping in a year, but we will see.  And you know what, it really does not matter to me the way I would have thought it would.  Having a 4 year old in diapers is not the same as thinking about the prospect of it.  That is the interesting part of all of this – reality is very different than the perception of it all.  I am thinking this is how I will feel in the academic sense as well.

Calvin is not always happy.  He is actually more challenging than I would like.  He gets upset over most transitions and the food that is set in front of him.  But, he gets over it and sometimes that is after a bit of scolding to stop.  If we are not careful, Calvin will run our lives even more than he already does 🙂

Calvin is a character.  He likes to shoot guns (toy or finger) and will play dead when shot.  He acts like a zombie on command and he can be quite perceptive and manipulative.  Again, we have to be careful because you don’t even realize it some times!

We love Calvin and wouldn’t trade him for anything.  Sometimes we need breaks though and that is usually when he is ill and not sleeping well.  He is more work than Nolan and Evan have been.  But in his own right and he is easier in other ways.  So we work hard not to fall in to the trap of comparisons or wishes.  We pray to accept things as they are and to have the means to care for him which also means taking care of ourselves and the other people in our family.

I’m always happy to talk about all of this and as you can tell by the long post, I have plenty to share.  I would hate for anyone to ever think I would be upset when they want to learn more.

[I added a bit to the photos to explain what is going on in them, we have had an eventful past few months.]

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photographyilisa ailts