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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

My Child’s Gone Feral and Yours Will Too

Everyone knows about the “terrible twos” and the horrible teen years well before they have children. People talk about it, all the parenting books mention it, your own parents remind you of how challenging you were during those phases of development. Yet somewhere between those two phases lurks a deep, dark secret that NOBODY talks about: at or around age nine, children go feral.

 

If this comes as a shock to you, then clearly your child is not yet nine. You should start prepping right now because there isn’t a moment to lose. If your sanity isn’t properly shored up, you are at great risk of losing it and never regaining it. I know lots of people who are only a shell of their former selves. I’d mistakenly chalked the phenomena up to alcoholism or adult ADD, but I now understand that these are parents who entered Age Nine with only a tenuous grip on their sanity to begin with, probably due to PTTD (Post Traumatic Toddler Disorder).

 

What are the warning signs of impending feral-ness? They can be tricky to spot at first because they slip in under the guise of typical child behavior. Sometimes they’re disguised as innocent questions, such as “But why do I HAVE to brush my teeth? What would happen if we just never brushed them?”

 

But once they’ve slipped in, they multiply rapidly. Soon, teeth-brushing morphs into a five-minute debate over why the brushing must be done now, and why can’t they just have one cookie first and watch one more quick little episode of The Avengers: Earth’s Mightiest Heroes. The next thing you know, your entire existence will be nothing more than pinging from one argument/debate/negotiation to another. You will feel yourself begin to slip. One day, after asking your child to sit down and get their nightly reading done, you’ll simply stand there in the dining room, mouth agape, as they run and slide across the tile floor (picking up every last dog hair the Dyson missed), pick up and chuck the dog toy across the room, watching it land in the dog’s water bowl with a splash that sends water spattering across the sliding glass door, turn around and open their umbrella in the house as they hop up onto a dining room chair and then leap as high as possible into their air so they can reenact the big scene from Mary Poppins, and then they suddenly careen out of the room entirely as you realize that they’ve yet to even pick up the damn book they’re supposed to be reading.

 

And then you know you’re well and truly fucked.

 

You’ll probably try bargaining first. “If you get blah-blah-blah done, you can have this-that-or-the-other.” Your mileage may vary, but it’s unlikely to yield results.

 

Next you’ll probably try being really, really firm. After all, it’s your house and you’re in charge. BAHAHAHAHAHAHAHA! It’s cute that you thought that. I used to think that too, and it still makes me laugh. You will threaten to take ALL THE THINGS away, and will soon find that you will have to do just that because your feral child didn’t even bat an eye as they said “But I don’t WANT to go to bed yet.”

 

By the way, that evening or weekend you suffer through because you took all the electronics away? Yeah, you might want to have someone on backup for when you’re ready to run screaming from the house and just drive until the car runs out of gas. Believe me when I say that you will spend a lot of time calculating how much gas you need to get to either Mexico or Canada, depending on where in the country you live and what climate you prefer. You won’t even think about taking your spouse with you, because at this point it’s every man for himself.

 

And here you are. Your child has gone feral.

 

Shhhhhhhhhh. There, there. Don’t cry, you’re getting snot everywhere. It’s going to be okay, I promise. Well, I don’t promise so much as I hope. I’m in the very same predicament YOU are. I lost my mind two weeks ago and told my husband I was quitting this lousy job, getting a crummy old trailer and moving to the Canadian wilderness where I would hunt and kill my own food with my bare hands. God, life would be SO much easier. But my mistake was in telling him my plan, because the next thing I knew he came home with a pizza and some hard lemonade and let me sleep in on Saturday and now I’m still here.

 

WE’RE still here. Me and you.

 

So last night I looked at my husband and said, “This little jackass is running the house. You realize that, don’t you? This is bullshit, we’re taking our house back.”

 

And then my husband got up to go get me a hard lemonade, but I was already at the table, working on my plan. And THIS was my plan:

 

 

Shut up, it's NOT a sticker chart!

Shut up, it’s NOT a sticker chart!

 

You’re probably thinking, “But Flannery, we took AWAY the electronics and it didn’t work. How is this any different?”

 

You see, they get absolutely no electronics privileges to begin with. Zip. Nada. They have to earn that shit, yo. And I know they’re going to come at you with, “But it’s MY iPad. Why can’t I use it whenever I want?”

 

And that’s when you say, “It’s MY house. I make the rules. You either follow the rules or you and your iPad can go live with grandma.” The beauty of that statement is that you still win if they go and live with grandma, because your house will be quiet.

 

I know you’re skeptical. Hell, I’m skeptical. But it’s been 12 hours and, so far, it’s working. I need to add a caveat to the plan, though. The next time I sit on a pissed-on toilet seat, I will take ALL THE TOKENS and he’ll have to start over. No, that’s not extreme. Extreme is when you smell like piss because your feral child was too damn lazy to lift the toilet seat.

 

I admit that I have no idea how long it will last, or if it will create lasting change, but I’m not going down without a fight. And you shouldn’t either. If we let these feral kids take over, civilization will be lost.

 

But just in case, I’ve calculated that I’ll need about $175 to get to Canada. Yes, you can come with me. But you’ll need to buy the road snacks and know how to skin a moose with nothing more than a bottle opener and your bare hands, which actually sounds a lot easier than parenting my feral child.

Hey You Guys, I Invented Something! At Least I Think I Did.

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As a child, Sunday nights were a mix of anticipation and dread. I looked forward to watching The Wonderful World of Disney each week, but I knew that bedtime followed the end of the show, and that meant the very next thing would be going off to school the next morning. I still dread Mondays, when the weekly rush of getting Connor and myself out the door will begin.

 

This past Sunday evening I was feeling particularly unsettled. We don’t do ADHD medications on the weekends, both to give Connor a break from them as well as to try and maximize their effectiveness during the school week. Unfortunately that means there is a lot of correcting of behavior and constant reminders about respect and personal space. Sometimes I don’t feel good about the weekends because it feels like we spend more time punishing or criticizing behavior then actually having fun together.

 

I was thinking about how frustrating it is to tell him something, and have him turn right around, completely forgetting what he was just told, and do the undesirable thing again. The phrase “working memory deficits” flashed through my mind, and then I had an idea for a game that would  practice memory skills AND build his self-esteem.

 

I have no idea if a game like this already exists. If it does, someone should let me know so that I can stop saying that I invented it! But if it doesn’t already exist, then hells yeah I’m taking credit for it.

 

I also have no idea if it will actually improve memory. I’m not a doctor, people! But it certainly can’t hurt, and the game will still be providing the child with a positive feedback loop, which is a good habit to start. At the very least, it will help with self-esteem.

 

I’ve not tried this yet, but am going to implement it this next weekend. If any of you have a chance to try it out, be sure to let me know how it goes. My hope is that it will help Connor learn how to hold something in memory, like “don’t slam the door”. But I also want him to know, despite the many, many reminders about not doing this or that, that he is still an awesome kid.

 

I wrote out the game on a handy sheet that you can print or share. Be sure to let me know how it works for you!

 

memory game

 

 

His Birthday, My Gift

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Connor had his 8th birthday last week. He didn’t really know it, but there was so much more to celebrate than just being a year older.

Second grade is almost complete. He is reading on grade level. Although he still struggles with math, he has worked really hard at it this year (thanks to some IEP goals I fought hard for). So hard, in fact, that he participated in something the school calls “Math Marvels.”

Math Marvels is something the school does each week, where students can come to the cafeteria and test their math skills by doing so many problems within two minutes. There are different levels, from addition of numbers 1-9, and so on. Connor showed a lot of interest in testing, especially since passing means you earn a medal. He passed the first level of Math Marvels on his second try, and came home with his medal around his neck.  There are no accommodations for Math Marvels, because it’s not part of the regular curriculum. That’s what I was told by the teacher. So this was accomplished without any extra support.

Math Marvels AND a soccer medal, woo hoo!

Math Marvels AND a soccer medal, woo hoo!

This spring Connor played on a recreational soccer team. There were 10 weeks of practices and games. He enthusiastically looked forward to it each week. He participated and never complained when it was his turn on the bench. He scored one goal this season, and somehow that one goal was more special to me than if he’d scored a hundred.

The Titans were a mighty force to reckon with.

The Titans were a mighty force to reckon with.

When the season ended, the coach had a special pizza party at Gattiland, the Texas version of Chuck E. Cheese. Each player got a medal. One mom and her son arrived a little late. Her son was arguing with her, whining, and she was exasperated. She warned him that they would leave. I could see she was at the end of her rope. I approached her and put my hand on her shoulder, and told her that Connor has Asperger’s and ADHD, and I’ve seen my share of meltdowns, and pulled him out of many places. I told her I knew how she felt, and it was okay.

Her eyes got big as she said, “I had NO idea.” She’d never suspected that he was any different. And although that shouldn’t be a source of comfort to me, it was. Yes, I feel some shame at that, but it’s true. To hear someone say that he just blended in, and they weren’t aware that he was any different, well that made me happy. I was happy for him, that he could have that experience without being branded as different, odd, or special. He was just Connor.

Yes, this birthday was special. So special that I dropped the ball on planning it, compared to past years. I didn’t call ahead and order a special cake, decorated with super heroes or movie characters. I didn’t go overboard with gifts. I didn’t even plan a party.

We got him the Skylanders game for the Xbox and a Spiderman web shooter. We, our little family, took him back to Gattiland for pizza and games. We came home and had the cake I picked up at the last minute at Wal-Mart, where I hastily had them add his name (and a shoddy job they did).

And he was happy with all of it. Not one complaint.

In fact, he insisted on cutting the cake, and said he’d cut it into equal parts of four, since there was four of us (don’t worry, I talked him into smaller pieces).

Only 8,000 calories per slice.

Only 8,000 calories per slice.

And at school, they have cupcakes and make a birthday book. Each child writes something on a page to wish him a happy birthday. Most of the pages were pretty ordinary, like this:

IMG_1587

But there were a couple that didn’t disappoint in the humor department. Like this, from a girl that knows what she likes:

It's all about the Crocs.

It’s all about the Crocs.

And this kid, who’s all about the cake (a boy after my own heart):

Well are there cupcakes? Oh, and happy birthday. But are there cupcakes?

Well are there cupcakes? Oh, and happy birthday. But are there cupcakes?

This past year was truly a gift. It may have been his birthday, but it was really a gift for me. Thank you, Connor, for the amazing gift of being your mother. You humble me. You bring me to my knees with your spirit and humor. You remind me to never stop believing in your ability. You’ve made me stronger and fiercer, while shattering my heart into a million pieces. It’s the most fulfilling, rewarding, and frightening experience I’ve ever had.

I couldn’t have asked for a better gift, even though it was his birthday.

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My House is a Death Trap, Part 1

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Although the house is almost never completely clean and organized because of our busy lives, I don’t generally consider it hazardous to our health.  But lately in seems that the universe is conspiring against me to see exactly how much more drama it can add before I finally relinquish control of my sanity.

Several weeks ago I arrived home from work to find a huge, gaping hole in the front yard.

Welcome home, I'm your new death trap!

Welcome home, I’m your new death trap!

Dafuq?

Inside the house, hubs and Connor were already embroiled over homework.  Hubs showed me the slip that was on the front door.  It was from AT&T, and explained that they were digging in our yard to repair some kind of cable that runs underground.

Fabulous.

You know what’s fun?  Trying to keep a super hyper seven-year-old from messing around with that giant hole.  Twice a day, morning and evening.  It’s like they dug the Grand Canyon in my front yard, and I was telling Connor that he couldn’t explore the canyon.

We thought they’d forgotten the hole, when 3 short weeks later they showed up again.  I arrived home from work and found workers digging a second hole, on the other side of the driveway.

And then I lost my mind.

“You’re supposed to be filling in the hole, not digging another one!  I have a small child and an elderly parent here, one of them is bound to take a header into one of these holes, and then what!?”

They politely told me they had to construct A FUCKING TUNNEL under my driveway, to replace the elusive, faulty cable line.

I threatened a lawsuit if someone fell in the hole.

I mentioned the neighborhood children being at risk.

I threatened to get a shovel and fill in the holes myself.

I tried to bribe them with cookies.

And still they dug.

Because two holes are better than one.  (I can't believe I said that)

Because two holes are better than one. (I can’t believe I said that)

I guess you can’t beat death, taxes, or the cable company, no matter how hard you try.

This time only a week went by before they finally filled in the holes.  And by some kind of miracle, no one managed to take a header into one of them.  But not for lack of trying.  I swear, if I ever have to argue with my child about playing in huge holes in the ground again, I’ll throw myself in and pull the dirt in on top of me.

Note: Yes, I realize this post is subtitled, “Part 1.”  That’s because there is a “Part 2” forthcoming.  Because there’s always some kind of tomfoolery going on at my house, that’s why.

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