Autism, Special Education, Special Needs, technology

Back to the Drawing Board

 

When my son, M, was born it changed my world.   Everything was brighter.  I loved all the little nuances of having a baby.  (ok, maybe not being up for 36+ hours during a colicky spell – but other than that.)  There was a new meaning for me.  So cheesy, yes, but true.  As he got older I of course thought that I had the most genius baby of all time.  I had all of the parent dreams of my child being a celebrated brain surgeon and a part-time actor on Broadway. (Not your dreams?  Hmmm…)  And then eventually we noticed so many differences between our child and others of his age.  I go into our diagnosis post here.  For example, my son couldn’t sit in a chair for nearly more than a slight moment when he was in pre-K.  I couldn’t even imagine him in a regular school setting.  I peered through the little window of his pre-K classroom thinking, “He’s not going to make it.  The world is SO hard, what are we going to do??”.

***And here is where I would love to interject with how therapies worked and we pulled together and found strength and alternative options for him and now he’s overcoming everything against all odds etc, etc.  But that isn’t really what happened and in a lot of ways, our situation has gotten more complicated.

We did find ourselves in a satisfactory public school with reasonable resource (re: Special Education) teachers.  We enrolled M in private pediatric OT (occupational therapy), found appropriate special needs play groups for him, worked with our pediatricians to find helpful medications to slow his impulse control down so he could  think more clearly.  Did it fix the autism?  Absolutely not.  Did it help the “sitting in the chair” efforts.  Absolutely.  Several of the teachers throughout elementary school were competent, a couple were good, and 1 was outstanding.  At least there was 1.  We had a few battles, most parents do, and most special needs parents certainly do.  There was one entire year where my son’s goals consisted of 1) not crying during the day and 2) having snack.  I’m not sure he really met either of those goals that year.  By the end of elementary school, he was doing ok, but had stopped progressing with any meaningful speed.  Now that he is in middle school, well, it hasn’t gotten any better really.  We’re hiring a team now to manage his IEP to ensure that he has actionable goals in school and an advocate to represent our family to the school and district.  Hopefully this will allow him to access more of his educational potential.  I was disappointed, frustrated and after all of the shock of the teacher conferences wore off, I felt like we were going to need a new path.  M was not going to be able to follow traditional academic to career paths like my other children might choose.  Not even if they were modified for him.  We were going to have to think outside the box.  For me this was so foreign.  I was pushed right up the academic ladder with no other alternatives given to me.  The thought of my child veering from the tried and true career path that I was so familiar with was daunting and scary. I was pretty sure I had failed my child at age 10.

My husband works in technology, and he came home in the midst of my “sky falling” episodes of  teacher conferences and started asking me some questions.  “Can he do simple math?” he asked.  “Of course”, I said.  “Can he fill out a form and write a simple paper?”  I was curious now.  “Yes, I think so”.  “Well, maybe not academics then, but there is a such thing as e-Sports you know, and you can earn an income doing that.  Maybe he could earn a place on a team?  We could look into tournaments”.  This totally blew my mind.  I don’t watch gaming and I thought just “kids” did that on YouTube.  Oh no, my friends, its a thing.  Its real.  Millions of people (80+Million according to ESPN gaming) watch video gaming tournaments around the world and yes, you can be a professional gamer.  Approximately 44% of those watching are parents, 38% are women, and more than half are employed full-time, lest you think that these are kids camped out in the basement of their parents’ homes.  The gaming industry is a multi-billion dollar industry and console and MMO (mass multi-player online gaming accounts for about 57% of all gaming (source:  wePC.com, NewZoo).  Twitch.tv and YouTube are apparently the biggest video-streaming sites for eSports.

So, most kids these days are good at gaming.  Spectrum kids/adults are often better.  Its the ability to hyper-focus and hone in on a particular detail or subject for a longer period of time than neurotypical counterparts.  They can find the differences in patterns, what doesn’t fit, puzzle solving – that sort of thing.  My son beat Super Mario Galaxy when he was 3.  Without being able to read.  I have no idea what this path might look like for our family, for my son in particular, but the path he is on has ended.  He has to make a turn, try something new.  So we’re going to try this.  We’re looking into teams and tournaments.  We’re beginning to teach him to record and edit video and he’s practicing speaking on camera.  He’s learning to code a little bit.  All of those skills are practical in the “real world”.  Maybe he’ll use them one day.  I figure if all we do here is to give him a hobby where he can be creative and reinforce his self-confidence, then that’s ok too.  My daughter ice skates in competitions, my son does theatre performances, I guess my oldest  will check this out.  Stay tuned!

#IamAFierceMom

Kelly

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You’re in a Cabin in the Woods

 

And you’re there for a week to expand your creative wings. What do you do? Knit? Draw? Play music? Do yoga? My friend Robyn would make violins. *Make them* 👀. When asked this rhetorical question recently I was so surprised that I had no answer. I still have no clear idea what I would do but it’s been on my mind a lot. My first thought was, “I’d sleep”. And yes, I would, but after that. After I was rested and felt refreshed and could think of other things besides my crazy schedule and our constant replenishment of groceries and meal plans. (We buy a flippin’ lot of groceries.) That conversation was about 2 weeks ago now. It’s taken me that long folks to have an actual thought of my own. I think I would write. I would write everything that came into my head without regard to the critical opinions of others and I would clear my brain of so many floating words! It seems that would be liberating. I might even piece some of it together.

The thought crossed my mind to get all judgy about my own abilities…”oh that is not very unique” or “everyone does that”. We, as a community, can’t let ourselves fall victim to negative self-talk. It’s so easy to shut yourself down, but friends- if we pick each other up with a quick kind word we can change the course of our day. And possibly our friend’s day, and their neighbor’s day and her daughter’s day. You get the point.

The next time you have an idea or a day dream and you think it’s silly. Freeze! Don’t be so quick to throw it out. Those ideas and dreams are the stuff happiness is made of. Hang on to those. If you want to go to your theoretical cabin and make muffins all week, you do it. Tell your friends. Maybe you’ll inspire them. Maybe we can inspire one another to reach out and stretch our creative muscles that we haven’t used in a while. (Mine are dusty!) We don’t have to be artists, fancy Pintrest-esque bakers or luthiers to be creative. You be you. What would you do if you had a week? I’d love to hear about it.

Be fierce friends,

Kelly