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

Anxiety, technology

Grocery Ghosts

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Just when I think I get this anxiety thing all wrapped up neat with a bow it seems to come unraveled.  We’ve had a lot happen lately, both good and bad stressors and the effect that has had on my anxiety has just been monstrous.  I take my meds and then I feel …. hmmm… disconnected.  It’s as though I’m trying to have a panic attack, but its not working out well, but I wouldn’t call it being relaxed at all.  Its funny about anxiety… I was at my mom’s group this morning and I mentioned I was having trouble with shopping at large stores right now.  They are so overwhelming even when I’m alone.  The lights, the advertising, the noises!  I felt like I have been taking on my child’s over-stimulation issues.  Could it be catching?  Just kidding.  My quarry of moms, after chatting for a moment, suggested that its remembered stress.  Kind of like PTSD.  I have felt so very overwhelmed and stressed and emotionally unhinged in atmospheres like that for such an extended period of time that now when I go into similar settings my mind enters fight or flight mode!  I can’t remember what I need, if I have a list, I can’t seem to work out how to get to the items I need.  I always have to go to the restroom.  Its a bit ridiculous.  I can usually manage smaller grocery stores like Trader Joe’s, but not always.  Example:  The other day in Trader Joe’s I got to the cash register and then remembered about 5 things that I needed and I asked if I should come back and the cashier was super-nice and took pity on my obvious rush to exit the store as soon as possible and asked someone to finish my shopping for me.  I even got a lollipop.  :::headdesk::::  The whole experience is completely stressful.  Much of it is imagined.  Occasionally I even forget that I have this problem and I venture out into a random general grocery store like “whatever” because I’m a grown-a** woman, right?  I can shop!  Well…. sort of.  Then I get in the store and I begin to hyper-ventilate and I get “fogged in” where I can’t really hear conversations around me and I can’t focus and suddenly I am looking for an exit.  This is why I have been so excited about online shopping because I can avoid all of those stressors.  My friend mentioned today that I really should maybe work on that.  Shopping in stores I mean.  The way she so kindly put it was, “You’ve got a long way to go ahead of you, you’re going to have to be able to go into stores!”.  LOL!  My moms group is going to plan a shopping-therapy outing to our newest local grocery store, Mariano’s.  I’ll keep you posted.  Apparently I am not the only one overwhelmed by grocery stores.

#BeFierce  #getyergroceries  #AxeMyAnxiety

#IamAFierceMom

Kelly

Food, technology

I. Just. Want. A. Sandwich.

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So I was dashing out the door to an appointment last night and I realized that I had made dinner for my children to have with the babysitter, but forgot to pack anything for myself and *lightbulb moment*:  I will pick up a sandwich from Panera.  Yum!  No problem, right?  Well….   I was in a hurry and I remembered how I had called in an order before or maybe I had ordered online, I couldn’t remember, so I thought, “oh!  I’ll just order it for pick up online!”.  I have developed sort of an aversion to talking to people on the phone when not necessary, especially businesses, so when I can I use e-mail or texts or chats or something similar, I’m all about it.  I thought this online order would fit the bill.  Well….  I went to the website on my phone which all but made it impossible not to download the app, “Why are you still using the mobile site”, it said, “download the app for easier ordering!”.  Oh, ok.  So I went to the app store and downloaded the app and started to create an account.  (high-pitched this time) Well….  Eventually I figured out that I already had an account, but I couldn’t remember which e-mail address it was connected to.  After a few minutes I got that figured out as well, but then I had no password.  :::headdesk:::  I just want a sandwich.  I just want some dinner.  I have 10 minutes to get where I am going, please to me a sandwich.  Hungry!  So now I was beginning to get really frustrated and hungry and time was running out.  After finding the e-mail address to which my sandwich account (Panera) was connected to, I downloaded yet another app for that e-mail address and I tried to log in.  :::send help::::  I have forgotten my password.  By this time I have run out of time to actually order online and I have arrived at the Panera to just order in person.  (the snail mail of food ordering)  Ugh.  Plus interpersonal skills on the weekend.  Grrr.  *sigh*  Ok, ordered and picked up food and have used my little club card thingy whereupon I discovered that had I figured out how to order online or through the app I could have saved $5.00.  Seriously.  Frustrated.  Feeling defeated I continued on to my appointment rather excited about my sandwich, but upset about my side choice with my You-Pick-2.  Why don’t I ever choose the bread?  I love the bread!  Just get the bread!  Grrr.  Online I would have chosen the bread.  Anyway.  I later did get that password figured out for my alternate e-mail account that was connected to my sandwich account and now I have synched them up with my club card thingy and am ready to rock.  Next time.   I downloaded 2 apps and spent probably half an hour trying to order a sandwich.  I thought this was supposed to be easier.  I remember not too long ago when it would not have even occurred to me to download an app to my phone to place an order for something.  Online technology changes our routines, our social patterns (when was it that I stopped liking the phone so much?), makes things easier to a point, but also can occasionally cause so much extra work.

Be Fierce.  #technicaldifficulties

#IamAFierceMom

Kelly