Why I Love That The Boy Plays Video Games

This past weekend, The Man and I took The Boy to Myrtle Beach for a mini vacation. Overnight, to be exact. We hadn’t been in a long while, and there’s just something about it that we adore. Grammy and Poppy had already made plans to go down for a long weekend, so we hopped in the car on Saturday morning and were on our way.

As The Boy has grown, he has developed a deep and abiding love for Myrtle Beach because of the overabundance of arcades. He has found his favorite games in several arcades, and indeed, we spent a good portion of our time Saturday following  him around and playing a little ourselves.

One of his absolute favorites is Galaga, a throwback to the 80s. And I love watching him play. You may think it a bit odd, that one of the things he does that makes me proudest is play an old video game, but here’s why: he wins.

He does well, he has developed his own insanely smart strategies that I’ve never seen anybody use in that game or elsewhere, and he often gets his name on the high score board as a result. And if he doesn’t, he’s completely ok with it, and has no real sense of failure.

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What can we take from this? Predictability helps him learn and develop strategies. The norms of video games (that you learn by doing, over and over again) allow him to learn and develop at his own pace. And by giving him just those two pieces, he has a high level of success.

One of the most-shared autism memes goes something like, “I wouldn’t change you for the world, but I would change the world for you.” We get a lot of resistance sometimes when we ask for modifications and accommodations. But two simple structures in place in that game are all it took for The Boy to become an expert, devising complex strategies and showing actual results. This is why we fight to get what he needs.

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Eyes Averted

After The Boy’s final band concert for the year, I anticipated a meltdown. His TA had asked his friends-who-are-girls to make sure to high-five him before they left, but I knew they wouldn’t. I tried to prepare him for it several days in advance, even getting a promise that he wouldn’t get upset because he knew he would see them the next day. But when he was done, the panic set in, and he wound up, eventually returning to the stage area (where many people remained, clearing the stage), throwing his binder, and then his mouthpiece (a small but heavy hunk of metal).

Everyone around us gasped, and then went about their business in more hushed tones. One kind soul retrieved the now-dented mouthpiece, and I thanked this person without looking at him.

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And I realized that I don’t even attempt to make eye contact as any of this goes down. I never do. Am I embarrassed?, I kept asking myself days after the realization. It would be ok if I was, but I generally don’t care what others think of me or my son. I had thought myself way past that stage.

After much soul-searching, I found that it wasn’t embarrassment that made me avert my eyes. No. I just don’t want to deal with everyone else’s reactions. I have enough to deal with, and it isn’t my job to comfort/explain/respond to whatever it is you are feeling upon witnessing my son’s autism in full color. It is my job to relieve his anxieties and calm him.

And if I look into your eyes, I will have to deal with whatever I find there.

I can multitask with the best of them, but not during a meltdown. He is my focus, and everything else is secondary, especially the thoughts of others.

So if you encounter a parent like me who won’t look at you in this situation, they may be embarrassed, or they may just not be ready to deal with you. If you are a parent in a situation like this, you don’t have to worry about anyone but your kiddo. S/he’s the one that needs you most, right then. Even if they are throwing hunks of metal at you.

 

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The Man and The Boy are a sight to behold.

When we end up going somewhere in two vehicles (which happens more than I’d like, but what can I do), The Boy will always choose to ride with The Man in his truck.  They talk about vehicles, and The Man makes the stupidest, corniest jokes that only 13 year-old-boys might find funny, and they crack each other up.

They don’t wrestle as much as they used to, because The Boy is quite simply too tall, and they could injure each other easily. But they are quite comfortable with each other, and it makes me smile.

The Man has learned a lot, especially in the last two years. He questioned much more at first, but now he seems to get it. He still gets annoyed, as I do, after listening to forty-five minutes of descriptions of the dome light of every known make and model of car. But he doesn’t lose his patience. He seems much more ready to understand that a meltdown is not misbehavior.

My BoysAs I write this, I am looking out our back doors, watching The Man teaching The Boy how to drive the lawn mower, while sitting up on the back of the seat because The Boy can no longer fit on his lap.

And earlier, I watched him tear up at a news story about a special needs family fighting to get treatment for their daughter. I know his perspective has changed, and I know now we are an “us”.

I am so happy for The Boy, so happy for us. And so proud of The Man.

Autism Awareness, Acceptance, and Advocacy

Well, it’s April kids.  It’s Autism Something day and month, depending on who you ask.  It’s such a controversy in our community, and it doesn’t even need to be.

Yes, we still need awareness, as is evidenced in our daily interactions with people who just don’t get it yet.  How?  I don’t know.  Maybe they live under rocks.  Maybe they are in denial.  Maybe they are just mean jackholes.  I don’t care.  But I will continue to attempt to enlighten them about my son and his buddies.

celebrate neurodiversityYes, we definitely need acceptance.  Yesterday, you read about someone who screwed up our Friday morning (and added a dose of anxiety that will last for the rest of the school year).  She definitely needs to find some acceptance real fast.  From kids who bully our kids, to teachers who still don’t know how an IEP works, to potential employers.  The world needs to hurry up and get with the program because we are definitely not in the acceptance stage in this society yet.

And yes, we need to advocate for our kiddos, and let them advocate for themselves.  Yes, adults on the spectrum need a national platform, and need to be included on the boards of their own nonprofits.  They need opportunities to show the world of what they are capable, and the skills to communicate their needs.

So whether you light it up blue, or walk in red, just be yourself in gold, or decorate with puzzle pieces, please realize we can’t do this alone, and we can achieve so much more as a cohesive unit.  Let’s agree to disagree on a few things, and consolidate our goals so that we can get to a point where everyone is aware, everyone accepts, and there is no longer a need to advocate.

Autism Awareness is Still Quite Necessary

Autism Awareness

The debates within the autism community continue to rage on, and one of the trendiest arguments to have right now is whether you support Autism Awareness or Autism Acceptance (as if supporting both is somehow not an option).  There are those who will have you believe that the national nonprofits that promote Autism Awareness are not doing enough – “Promoting awareness is not enough!”

I’m here to tell you that this move to the south has proved that we still have a long way to go with Autism Awareness.

I’m not going to generalize about this region, although it is shocking how few services there are here in comparison with where I lived up north.  What resources are here are new, as in within-the-past-few-years new, and I think, “We should be past this shouldn’t we?..”

I’ve communicated with teachers who claimed to have no previous knowledge whatsoever of the types of common autistic traits The Boy exhibits, and how to modify and adjust for that in their classrooms.  New teachers and old teachers alike who have no awareness.

And my struggles with The Boy’s current placement have shown me that his school, although having had autistic students in the past, is still quite ignorant about just what autism is.

So yes, I wholeheartedly support Autism Acceptance – what parent of a child on the spectrum wouldn’t??  But I must say that even today, Awareness alone isn’t a safe bet.  And I believe you have to start somewhere.

Don’t Knock Awareness

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I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine.  And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone.  We need armies of people to help us demand that these basic needs be met.  And we don’t have armies, yet.  We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”.  Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it.  We cannot rely on large national nonprofits to do the work for us.  We have to get our kids out there.  We have to make our presence the norm.  We have to be unapologetic.  We have to use every teachable moment.

Doing all of that creates awareness.  And awareness is where armies are born.

Pick a color, pick a side

Some autism parents are clearly “against” Autism Speaks. They think raising awareness isn’t enough. They think their executive directors make too much money. They think they diminish the people they claim to help with their language. And they think Autism Speaks should do more to help individual families.

The thing is, Autism Speaks has raised awareness at a national level, much more than a local group could hope to do. And because they take in and disburse so much money, their executives make a hefty salary, but not more than similarly structured nonprofits. And they have funded an incredible amount of research. I do agree that they should drop the word “epidemic”, but I am not going to advise others that they should stop supporting the group entirely.

I have no problem lighting it up blue. I do have a problem with people making others feel bad about supporting the group. If you expect a national group to provide services at a local level, you are expecting a lot. There are lots of local groups that do provide services to families, and you can support this great diversity of nonprofits that help on all levels. You don’t have to pick a side.

Happy National Autism Awareness Day!

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Hey Autism Community: Enough Already!

I am always saddened by the divisive nature of the autism community.  It seems that we parents need to pick sides on plenty of issues, or be ridiculed, or even better “educated” by those who hold differing viewpoints.   For or against vaccines?    Autism Speaks?  Medication?  Jenny McCarthy?  Chelation?  We are even supposed to pick sides on whether the “Trip to Holland” allegory is touching or insulting.

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

When The Boy was first diagnosed (at age 5), I was handed a brochure, and told to contact the Autism Society of America.  And that was it.  I obviously needed more support than that, and looked to the Internet to join a group in which I could participate to the extent that I wanted to on any given day.  I joined a yahoo group of autism parents, and thought, “This will surely help.”  I couldn’t have been more wrong.  I was confused by all of the differing opinions on things I had never even heard about, and saw actual arguments unfold, in this group of adults whose supposed sole reason for existing was support.  I did not remain a member long.

I think we do our children a great disservice by not recognizing that just like autism is a spectrum disorder, the treatments, causes, documentation, and people attempting to assist us are all a part of a larger spectrum, as well.  There is no one treatment, no one cause, and no one group that can satisfy all of our needs.  If you think that, you are shutting the door to so many other possibilities for your child.

We must trust ourselves to do what is right by our children, as no one knows them as well as we do.  But we must not abuse each other in the process, as no one knows what we go through each day better than another parent of a child with autism.  We must agree to disagree so that we can move forward, creating better treatments, finding causes, and building better organizations for our community.  The divisive nature we have shown thus far is quite possibly holding our cause back, and it will continue to do so, unless we make a change now in how we treat each other.