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Category Archives: Holidays

Why I’m Lucky To Have A Special Needs Family

Last night I was sitting outside on the porch, enjoying the fresh air and only slightly cool breeze that is a Texas winter, and had a rare, contented moment of thinking, “I love my family. I am SO lucky.”

 

  

For the ordinary person, that wouldn’t be an unusual feeling to have, but having a child with special needs means that sentiment doesn’t fit into society’s narrative of what it’s like to be a special needs family. I should love and be devoted to my family, but I shouldn’t necessarily consider myself lucky.

 

“That’s not true,” you say. “I wouldn’t be surprised to hear someone say they felt lucky in their special needs family.”

 

But way deep down, you know there’s that tiny, dark place where you think, “I feel so lucky to have “healthy” children. I am so grateful they don’t have a disability.” Because to many people, someone with a disability is an “other.” Her child is different from my child.

 

But I tell you, I am lucky. To an extent, most of us special needs families are. This isn’t the part where I say, “We’re not lucky because of the disability, we’re lucky in spite of it.”

 

And I’m not going to run through all the valid attributions of “being lucky to have my child alive” or “being lucky to have a child at all, when many can’t”.

 

What I’m referring to is the unavoidable and essential ability to view things through someone else’s eyes (to the extent that you can). With autism, you must learn very early on how to ferret out the antecedent to a meltdown, or you won’t know how to avoid future meltdowns. Was it a sensory response? Was he overstimulated? Is he coming down with something? Are his clothes uncomfortable? Did the change of routine cause an anxiety overload? You think of little else for days or weeks on end, not because you want to, but because you become obsessed with trying to understand your child.

 

When you’ve finally uncovered that the sound of your hairdryer is causing your child major anxiety, you set about changing the environment so your child won’t be caused distress. Most of us will close doors and get our child noise-canceling earphones. We know that avoiding hairdryers for the rest of their lives isn’t reasonable, but making small, doable changes is reasonable, and you are able relieved to ease your child’s pain by just that small accommodation.

 

In short (lie; this is terribly verbose), you learn how to critically examine cause and effect, and analyze the interactions of different experiences on mood and behavior. Because you have to.

 

This brings me to my hypothesis: most “typical” people don’t have to think in those terms on a constant basis. I would venture that the “average” person goes about their day, giving little thought to whether the sound their shoes make on the tile floor is bothersome to someone, or whether they’ve properly prepared to use their hairdryer.

 

The reason this acquired necessity makes us lucky is because it gives us an enhanced way of viewing the world. You many not understand why that enhancement is as valuable as it is, so I’ll try to illustrate it.

 

Imagine if you worked at a convenience store, and one evening a young ethnic man comes in and holds a gun to your head, demanding all the money you have in the cash register.

 

Now, some of you would try to calmly do as he asks, hoping and praying that he just doesn’t kill you. Some of you might actually try to fight him, or grab for a weapon behind the counter. Either way, no matter which way you responded, you would probably feel angry and want him put in prison for a long time. He’s a criminal. He’s a scumbag who steals from hardworking people instead of getting a job.

 

And maybe he is those things. But how many people would take the step beyond to wonder what conditions came together to make up this man’s life, leading him to commit those crimes? And to have the wherewithal to know that asking those questions, caring about those possible conditions enough to give them careful thought, doesn’t mean you’re excusing the behavior, or the need for a consequence. On the contrary, having those thoughts leads to discussions. And discussions lead to careful inquiry about important circumstances that shape people’s lives, like poverty, racism, classism, disability, gender identification, sexuality, family dynamics, community, and health resources.

 

The next step in this process is to consider: if we know that human beings growing up in certain environments are more likely to have some kind of negative outcome, which ultimately affects society as a whole, then how do we begin making changes right now that will create positive long-term effects in our country? With the knowledge of how conditions shape human behavior, do we reconsider how we approach the big topics we wrestle with as a nation, like wage equality, access to women’s health services, investing in impoverished communities, mental health services, and access to higher education? Do we look at the utter failure of our prison systems to “rehabilitate” criminals, as evidenced by the high rate of recidivism? Do we think about whether spending federal dollars upfront to avoid future criminal behavior by investing in people and their environments, rather than spending it to house them endlessly in prisons that are perpetually bursting at the seams? Do we then apply this advanced level of critical thinking to the choices we make politically?

 

 

As exhausting as it may be to analyze things to this extent, it’s the very reason I feel lucky to have a special needs family. The training I got from my son has given me a lot more anxiety, that’s true. But it’s also given me the ability to think far ahead about the cause and effect of conditions on human beings. And it’s given me the invaluable knowledge that it’s essential to our long-term survival to see the kinds of changes needed to elevate us as a species, rather than remaining unconcerned for those “other” people until they come to us to commit a crime.

 

I am lucky. My life and my thoughts are infinitely more challenging and complex, and it’s worth it. If it wasn’t for my son, maybe I would be someone who thinks we need more guns, more prisons, more walls, more police, more us vs. them.

 

Instead, I’m someone who wants more access to healthcare, more education about diversity, more community centers, more access to housing for the homeless, more benefits for veterans, more mental health resources, more kindness, more love — because I know that these are the kinds of supports that shape positive outcomes that ultimately affect all of us.

 

In this season of holidays and politics, I hope you all find yourself with loved ones that make you feel lucky, while you also consider (perhaps a little differently) what each of the politicians want us to have more of in our country and communities.

 

  
* It’s possible I only followed the first part of these instructions. 

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Holiday Affirmations

It’s the holiday season and I know you’re stressed. I’ve been reading all about it on Twitter and Facebook. It’s not just the decorating and gift-buying and cooking and schedule changes for the kids, it’s the inevitable friend or family member that leaves you feeling slighted, judged, and unappreciated.

 

We all have at least one of those in our life. But I want you to know, even if you don’t hear it from the ones you’re with during the holidays, that you are awesome. I’ve made a list of all the things you should be hearing from your loved ones as thanks to you for making space in your busy life for me and my Connor stories.
affirmations rev 1

And try to remember that it’s temporary. You will get your sanity back in January!

The Twelve Days of Autistic Christmas

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This was originally posted last December, but it seems like a good time to dust it off for the holidays!

 

The Twelve Days of Autistic Christmas

It Puts the Frosting on the Lamb

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Poor Clarice, the lambs never stopped screaming. Such is the miracle of springtime, I fear.

 

Despite our lack of religious conviction, we still have holiday traditions. As such, we celebrate the return of spring by decorating eggs and eating chocolate rabbits. Nothing says “spring” quite like rabbits and eggs, am I right?

 

Nope, wrong. There IS another way to celebrate spring. My good friend, Lizbeth, introduced me to the mysterious world of The Lamb Cake (dunh, dunh, DUNH!).

 

It’s been a thing for many years, I’ve learned. Lizbeth learned to make lamb cakes as a child, by helping her grandmother. And because she is a good friend, she decided to send me a mold for a lamb cake.

 

I should have smelled the set-up.

 

But since I had orangesicle cake mix and purple frosting in the pantry, I decided to go for it. Because a lamb can be purple if I want it to be! And also, I have purple sheep in Minecraft, so there.

 

I spent several minutes greasing and flouring the bottom of the cake pan, before pouring in the batter. Did you catch that I said “bottom” in that sentence? That’s important information, since this mold also has a top half. You put the top mold on top of the bottom, and they fit together. As the cake bakes and rises, it rises and shapes itself into the top mold.

 

THE ONE I DIDN’T GREASE.

 

Yeah, that one.

 

And since I’ve been having trouble with my oven every time I bake something, with the edges always being over-done and the middle being under-done, I had the genius idea to cook it in my convection toaster-oven.

 

What could go wrong?

 

Lizbeth said she bakes her cake about 20-25 minutes, so I set the timer for 25. When I heard the ding, I took it out and tried to lift the top off. But it would not come off. So I banged on the top a little and wriggled it around, and I finally got it separated. The pan and the cake.

 

 

20 minutes my ass!

20 minutes my ass!

 

All I can say is I might be responsible for the lambs screaming.

 

But since there was still uncooked goo in the middle, I smooshed it back together and put it back in for 15 minutes. My child and I have a fierce love of cake, and I was not going to give up hope.

 

But I should have.

It almost still resembles a lamb.

It almost still resembles a lamb.

 

 

I managed to get it out of the pan, but lost several big chunks and the neck broke. So this lamb was going to have to be the lying down kind of lamb. I figured I could maybe cover up all the imperfections with frosting. Easy-peasy!

 

Let me preface this by saying that I am not a professional baker, lest all my fancy trickery above has you believing that I am. I can passably frost a square or round cake, but I’ve not previously made an attempt to artfully frost a character cake. How hard could it be?

 

So I began applying the purple frosting and made a special effort to fill in the missing chunks and the gigantic crack in the neck. And then I found some mini M&Ms for eyes, because we do things big at my house.

 

And I was finished! Connor had been dancing around, waiting for the cake to be finished. I tilted it up to show him and he was ECSTATIC. “Can I have some now, PLEEEEEEASE?”

 

“Of course! Let me show dad first.”

 

I walked over and tilted it up for hubs, who then looked at me with one eyebrow much higher than the other, and then he passed on having some cake.

 

The hell?

 

I think he did not appreciate my artistic endeavor…

 

It's still good cake under that frosting!

It’s still good cake under that frosting!

 

And the lambs still scream…

 

Ok, I admit it…it’s not my BEST cake ever. But if you’re a cake freak like me and Connor, it doesn’t matter. Damn straight we ate that cake!

 

The next day, Lizbeth sent me a picture of her lamb cake. Don’t worry, we’re still friends. But I will not just lie down and die, oh no. I’m making another one this weekend. I will not be beaten by a cake mold. We’ll just call my first one the “sacrificial lamb” of spring.

 

Other kid's moms make lamb cakes like this.

Other kid’s moms make lamb cakes like this.

 

I’m positive my next one will look just like this, except I’ll be using a red velvet mix.  What could go wrong?

Happy Holidays, 2013

Hey. You guys.

Happy holidays, ok?

Whatever you celebrate. Or don’t. Hope it doesn’t suck.

And if it does, channel your angst into creative writing or poorly drawn holiday imagery.

 

XMAS2

The 12 Days of Autistic Christmas

The Twelve Days of Autistic Christmas

Dear Retailers, Enough is Enough.

Dear Retailers:

My name is Flannery, and I’m a consumer. I’m the person your stores are supposed to be catering to; Jane Q. Public. I’m not happy with you right now, retail stores. Not one little bit. Let me explain why.

Autumn is my favorite time of year. We live in one of the hottest states in the country, and I really appreciate feeling a cool, crisp chill in the air (at 9pm each night, when it finally lowers from the 90s, all the way to the 70s – brrrrr!). I wait expectantly for some of the leaves on some of the trees to show beautiful fall colors. I get excited about the prospect of pulling out favorite, cozy sweaters and stylish boots. I simply love autumn. I love Halloween. Each year I look forward to shopping for spooky decorations and helping my son choose a costume for trick-or-treating.

These good feelings of mine should be ramping up right about now but, instead, they are already being crushed under the weight of glitzy Christmas junk. It’s only September, but somehow many major retailers feel empowered to skip over Halloween AND Thanksgiving, and bombard us with Christmas decorations. In September!

But put my paltry feelings aside, Mr. Giant Retailer. Let me tell you about my son. He’s autistic and has ADHD, and his sense of time is already very, very slow in developing. At 8 years old, we are STILL working on the concept of yesterday, today, and tomorrow. Don’t even get me started on “last week” or “next week.”

So what did we find at Target yesterday?

Why, Target, WHYYYY?

Why, Target, WHYYYY?

Do you see what you guys have done? You’ve got an aisle with Halloween costumes, a leftover summer grill on the end cap, and the very next aisle you have a freakin’ Christmas display?!

If this completely jacks up my feelings of happy autumn joy, then what does it do to kids like mine? HOW DO I EXPLAIN THIS TO MY CHILD? “Gee son, it’s not even Halloween yet, but while we pick out your costume we can also get some new Christmas decorations for no good reason.”

I want to introduce you to the phenomenon known as perseveration. See, perseveration is when someone gets stuck on a particular thought or topic, and they can’t stop themselves from talking about it, ad nauseum. This means that there will be three-and-a-half months of discussing Christmas at my house. To put it in perspective, that means that I will spend 26.9% of 2013 talking about Christmas.

Now I want to be really, really clear here: this does NOT make me want to buy more Christmas junk. In fact, it’s just the opposite. It makes me feel bitter and angry about giving you one thin nickel toward this holiday crap. Don’t think I’m alone in this, either. With 1 in 88 children being diagnosed on the spectrum, there are plenty of families dealing with this same frustration. I’m even willing to go out on a limb and guess that many non-spectrum families don’t care for this nonsense either.

In short, major retailers, SUCK BALLS. Big, shiny, glittery balls.

Here, suck on these.

Here, suck on these. They came from YOUR store.

And next year? Maybe you could let us actually enjoy one holiday at a time. Because I have no interest in wolfing down a hearty Thanksgiving dinner, loading everyone into the car to go watch fireworks, opening Christmas presents as we sing the national anthem, and then driving home to hunt for Easter eggs.

I don’t need that kind of pressure. We’ve already got enough, thanks.

Sincerely,

Disgruntled Autism Mom

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