Kids Are Weird

April 19, 2018

Kids are weird.

Aren’t we all?  We all have an idiosyncrasy, weird tick, vice, odd habit/preference, etc.  And for the most part, other than Seinfeld (for those of us who remember the 90s), we seem to be celebrating those in each other.

However, when it comes to differences caused by damage to the brain, it seems we still operate more from fear or a lack of understanding, and many times, understanding only comes through a personal experience. 
 

I’m writing this as I absorb a tragic local news story about a 5-year-old little boy who was severely autistic and non-verbal.  The thought of someone with a special need being treated as an annoyance, someone to be disposed of, or as less than human crushes me.

I realize I'm more sensitive to this story being the mother of a child with special needs.  It’s a position that has opened my eyes to ignorance and discrimination, but one that coincidentally has opened up a special pocket of the world that celebrates and shouts inclusion. 
 

My son Asher was born at barely 26 weeks and weighed 2 lbs and 1 oz.  He had an extremely traumatic first 5 months of life due to his very early arrival and a virus he caught while in the NICU.  His tiny body fought through collapsed lungs, jet ventilators, blood transfusions, paralytics, NEC scares, pneumonia, etc., in addition to oxygen, breathing, and heart monitors that kept him plugged into a wall for most of his first year of life.  We almost lost him on several occasions, and this experience left him with damage to part of his brain. 

 

As with many marginalized groups of people, my son did not choose spastic diplegic cerebral palsy.  There’s a misconception that people with developmental delays and disabilities don’t have as much to offer in relationships and friendships or to the world in general, and my son’s diagnosis at 18 months old very abruptly brought that way of thinking into sharp focus.
 

I was immediately fearful of the new imagined future for my son, and I felt the isolation closing in.  I emotionally exhausted myself (and still do) constantly trying to forecast how he would be treated as he got older or what he may or may not ever get to do or experience.  I was hyper-focused on the limitations that other people would place on him, and all of that was due to fear and a lack of understanding. 
 

I admit I hadn’t paid much attention to the word “inclusion” until the need for it touched us personally.  I wish I had been exposed to an inclusive environment much earlier in life so these kinds of differences wouldn’t seem so foreign, scary, and isolating, just as they did the moment we heard Asher’s diagnosis.   I read somewhere that a failure to teach inclusion to ALL students is the same as exclusion, and I agree 100%. 
 

We learned of High Hopes only after we had a need for them, because they offer therapy.  I hadn’t heard of inclusive classrooms until we walked through the doors at High Hopes.  Asher started attending multiple therapies at High Hopes at 9 months old, and once his immune system was strong enough to be around lots of other children, his therapists mentioned he could benefit from the inclusive preschool classes offered at High Hopes.
 

 

We started him a few days a week and his development started to take off.  We are those annoying parents who attended every therapy, stayed afterwards chatting with the therapists asking tons of questions, and lingered too long talking with the teachers in the classrooms. We were learning to be teachers, doctors, therapists - we just couldn’t absorb enough information to help our little boy, and the people at High Hopes have willingly walked this journey with us. 
 

When you walk through the halls of High Hopes, you hear staff call every child by name, whether or not it’s a child from their own classroom or therapy.  Their inherent sense of community has developed because they work with each other on a more extensive level to give the kids the best possible outcomes.
 

You’ll find a range of learning and physical abilities, and the teachers do an excellent job supporting the development of each child.  They are paying attention to the developmental nuances of every child, and they can give you a detailed play-by-play every day at pick-up.


On a very important side note, they also do an equally phenomenal job of loving these kids, making it just a little easier to head off to work knowing your kiddo is spending part of their day with people who are heavily invested in their success.


High Hopes has introduced me to some of the most beautiful people, from our dear friends’ son whose humor we’ve grown to know through the way he cuts his eyes at you because his body doesn’t allow him to say something the way you or I would, to the little friend who tries to play with my son or include him in what they’re doing, to the moms who reach out to ask questions or offer help.  It’s a wonderful community, and it’s one I wish extended much further.


My eyes are also more open to the inclusive love from friends around me outside of High Hopes, like the one whose daughter thinks my son is odd because he wears jeans.  Not because he walks with a walker and ankle braces or doesn’t engage in conversation with her, but because he wears jeans with buttons.  Bless her sweet, lovable, wide-open heart.


It’s so important to expose children at this age - the age of the open heart - to differences, to spark curiosity about the uniqueness of the world and people around them. We can learn to show love and practice understanding if we start early enough. 

 

For this reason, our 2-year-old, "typically developing” son Maddox also attends High Hopes.  I’ve already seen him develop a patience and kindness I didn’t realize a 2-year-old could possess (most of the time), and I’ve seen the beginnings of him wanting to help his brother (sometimes).


And on the other hand, I’ve seen Asher develop a patience with his little brother and a curiosity about the things he plays with and the way he approaches situations.  I realize the road won’t always be smooth, but I do know that differences won’t be foreign to my boys. 


And in the spirit of inclusion, please don’t forget the parents of these kiddos.  Our hearts are more broken at times than we ever thought possible, and we have our own unique road to navigate that can be very isolating. We constantly struggle to let our hopes for our children outweigh our fears and we dig deep for strength and tenacity, every minute of every day.


High Hopes, for us, is an essential part of our kids’ lives because we want inclusion to be deep-rooted in the way they navigate life.  It’s not a place full of children with special needs, but a place full of people who meet the needs of all sorts of special children. 


Yes, my kids are wonderfully weird, and so are we.  They come by it honestly.  My hope is that we’re modeling and exposing our kids to love and understanding as much as possible in their day-to-day.

Each of our children is a gift to be treasured regardless of ability, and we love with an extraordinary love.  Because I’ve learned that when we see someone for what they cannot do, we limit their chances far more than their disability ever will.

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