The Power of Words

The Incredibly Offensive Letter Sent To A Mother With An Autistic Son. I don’t know if you saw this story going around on facebook and other social media yesterday, but it pretty much destroyed me. It’s so horrible that I hoped somehow it was a sick joke; an a-hole’s version of The Onion. Basically someone in a neighborhood in Ontario sent an anonymous letter to the mother of a 13-yo boy with autism, railing her for letting her son…well…live. It ends with “Do the right thing and move or euthanize him.”

The community rallied around the family, which is lovely to see, but it sickens me that it was even an issue. That they even had something around which to rally.

So many fears made manifest in this one piece of paper. Strange that paper with ink on it should hold so much power, but it does. And it sickens me.

Knowing is Half the Battle…

I am about to see some of my best friends that I haven’t seen in a long time. At least 2 years, for some as long as 5 years or more. I am beyond excited–these are the types of friends who are truly FAMILY, you know? The ones where if I called and simply said, “I need you,” they’d say without hesitating, “I’m on my way.” Those friends where when I first see them I instantly start crying (I’m a crier), and hug them every 5 minutes. Those friends where when you are with them, no matter how much time has past, you pick up right where you left off.

The thing is…I’ve gained weight since I saw them. Enough where I literally sat down the other day and wrote out an email that I nearly sent to them, APOLOGIZING for the weight gain. Apologizing and warning them that…I don’t know…I’m not…MYSELF. Giving them the heads up that the past few years have presented significant challenges, it’s been hard, I’ve been busy, I’m getting older…excuse after excuse, literally apologizing that they’ll have to witness it.

I realize how effed up this is…truly, I do. And some of you understand that even just this realization represents progress in my very long struggle with self-image issues and body image distortion. But it’s still really screwed up.

These people are the most forgiving, the most accepting, the most understanding of anyone in my world besides my family. Hell, they *are* part of my family. They are also parents, they have witnessed our challenges, some of them have also gained weight. But for whatever screwed up reason, I feel the need to apologize for it.

This post does not have the sentimental, enlightening, or empowering “twist” at the end where I mention the messed up world view and then share the plucky way I overcame it, and how you should, too…sorry. All I have at this point is the ability to say, “THIS IS WHERE I AM. I recognize it’s effed up. That’s something.”

And a promise that I’m still working on it. And that’s what this blog is about, after all…I understand logically that it’s screwed up, that I’m not this horrible disgusting beast of a woman, but that head knowledge gets short-circuited on the way to my heart.

I am not looking for compliments, just being honest. That’s all I can muster. Sorry, friends.

The Terrifying Truth of Elopement

4:39 am this morning. I was in bed with Boba (of course) and happened to wake up to the sound of little feet in the living room, pitter pattering back and forth. I rolled my eyes and thought to myself, “Great; another ridiculously early morning when Wickett is jacked up and all over the place.” So I rolled out of bed and went out to find him.

And my heart stopped.

Wickett was standing at the door that goes from the kitchen to the garage, hand on the doorknob. He was wearing a jacket and his shoes. At first I was confused; we deadbolt the door and have the key on one of those stretchy key fob things up out of his reach. And then I saw the stool. That’s what the “pitter patter” of little feet had been–he went into the bathroom and got the stool that Boba uses to brush his teeth, brought it back into the kitchen, stood up on it and managed to reach the key, pull it down, and unlock the deadbolt.

I tried to remain calm and just asked him what he was doing. He looked a bit guilty (knew that he wasn’t supposed to do what he was doing) and replied, “Nothing.” “Buddy, you have on your jacket and shoes and you worked hard to unlock the door. What were you going to do?” “I just wanted to play outside.” That was probably true.

BUT. But. But. What if. What if. What if.

What if I hadn’t have woken up? He knows how to open the garage door and would/could have. He wanted to go outside, and despite having a deadbolt and the key “out of reach”, he was making it happen. Elopement.

For those who are not familiar with the term, elopement (when related to people with autism spectrum disorders, Alzheimer’s, dementia, etc.) is when someone wanders away from a safe environment. Here are some terrifying statistics on elopement for kids with autism:

“According to data released in April 2011 by the Interactive Autism Network (IAN) through the Kennedy Krieger Institute (KKI):

  • Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional

In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent. (http://www.awaare.org/)”

In general, Wickett does not tend to be an eloper. But the terrifying thing is, he could be. He proved that. I do believe that he just wanted to go outside and play. BUT. He easily could have gotten distracted, entranced by his newfound “freedom” (outside with no one to tell him what to do!), etc. and wandered off. He has bolted from us in public places before. He is getting bigger and faster and stronger and could easily slip away. Wickett is a very smart kid…but he’s also just 5 and has some major dysfunction when it comes to executive functioning (another post for another time), impulsiveness, and decision-making. More than the average 5 yo boy.

In the moment early this morning, I managed to keep my cool. I got down on Wickett’s level, made him “listen with his eyes” (tends to help him make better eye contact), and explained that it was very very dangerous, blah blah blah, very important that he tell us, blah blah blah, etc. Wickett is a smart kid and I know he understood logically what I was saying. But in the moment where freedom is wafting in from the driveway, where he could just get on his bike or scooter and take off into the damp night air, who’s to say what might happen?

But later, after I dropped the kids off at preschool, after I returned home and crawled back into bed feeling sick and horrified, the “what ifs” swirling around in my head making me dizzy, the panic truly set in. I tried to go back to sleep (because I desperately needed to), but the panic…the panic making me short of breath and unable to stop the images that were firing away in my brain.

Needless to say, I’ll spend much of today figuring out what *else* we need to be doing to turn our home into Fort Knox to try and keep him safe. Goody–there are $300 shoes we can buy. :/

Here are some links to websites and articles if you’re interested in learning more about elopement:

http://www.awaare.org/

http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement

http://www.ncbi.nlm.nih.gov/pubmed/23045563

https://www.smart911.com/blog-article.php?p=5694

Living in Triage

In hospital emergency rooms, in ambulances, on the battlefield…decisions are made as to how to treat the wounded. Triage. From the French word for sift, separate, select. It’s how care providers determine who will get what sort of treatment. If a patient is likely to die no matter what course of action is taken, or likely to live no matter what course of action is taken, then their treatment will typically be put on the back burner in order for providers to focus on patients for whom immediate care will hopefully have a good outcome.

I often remark to people that we feel like we’re constantly living in triage. I feel constantly disorganized, behind the 8 ball. Like we’re just putting band-aids on gaping wounds…band-aid after band-aid after band-aid as it bleeds through. There are boxes we’ve never unpacked from when we moved here nearly 5 years ago. Our dining room shelves? Fuggedaboudit. They’ll get cleared off, but then when one of the boys has a toy taken away from them, up it goes on the shelves…and then another toy, and another, and then things get lost or everything comes tumbling down, etc.

And then…there’s the garage.

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Ugh. I feel gross just looking at that picture.

The garage has become…a nightmare. Things get literally flung out there. Cardboard recycling, chicken food, lawn equipment, toys, bikes, etc. And because the garage is full (or at least too disorganized to be able to tackle…because of the whole triage thing), the house fills up because we don’t have anywhere to put things, etc.

Which brings me to…THE SHED. The (hopefully) life-changing, glorious shed. The shed is the starting point for this summer’s theme, TAKE NO PRISONERS!!!!!!!!!! Pooling some birthday money, we bought a shed kit and with the help of some friends over the last week, we are almost done putting it up! I have high hopes for what it could mean for us. We can get things out of the garage, which means we can organize and make better use of our space overall, which means less stress, etc. I know it might seem like a small thing–just a shed, after all–but it has already jump-started the cleaning, purging, and organizing that is helping me feel more in control…in a life where there seems to be precious little.

Here are some pictures of our adventures so far:

The backyard before:

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The shed kit in our neighbor’s trailer: Amazing that it fits in something so small!

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Laying down the platform to keep it off the ground (since our backyard gets squishy with lots of rain:

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The end of day 1! The floor done and about half the walls done.

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Day 2, getting up all the walls:

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Walls, doors, and roof all up!

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End of day 2!:

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Day 3: Starting to get the roof on, working on the workbench and shelves inside:

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End of day 4: Almost done! Just painting left to do!

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We’ve already started moving some things out into the shed…which inspired me to get the recycling out to the plant and put some items for sale on the internet. Which inspired me to start gathering up the boys’ older books and toys to donate to Goodwill, clothes to donate that I haven’t worn in awhile, etc.

It might be “just” a shed, but I feel like it’s going to get us out of triage…that this immediate care will provide a positive outcome. It will provide us the opportunity to do more than just put band-aids on these areas of our life that cause us so much stress; we will finally be able to do surgery, move to the ICU, then rehab and recovery.

**We are so grateful to the friends and family that have helped make the shed project possible!**

What we mean by “short on sleep”

Those who know our family know that we are short on sleep. All of us…very, very, VERY short on sleep. Kids on the autism spectrum often have sleep problems due to dysautonomia (body’s inability to regulate itself effectively), adrenal disfunction, seizures, etc. Wickett is no exception. We have yet to isolate exactly what the factors are that have led to his particular sleep problems, but have not given up trying. Boba doesn’t have an excuse as far as we know…:) His issues are mostly behavioral (not physiological), which are mostly my fault, but it’s still a problem.

I just wanted to try and let you have a sneak peek into exactly what I mean when I say that sleep is…”rough going” in our house. Here’s an average night for us:

6:30 pm: Wickett gets his evening medicine, which includes his one prescription med (Clonidine, a vaso-dilator that helps to calm him) and some other supplements. If he doesn’t get this med, I literally wonder if he’d sleep at all.

7 pm–After in PJs, start to settle down, watch a video while we snuggle on the couch.

7:45 pm–Kids go to bed. I have to bounce on the yoga ball while I hold Boba, singing to him until he falls asleep and I put him in bed. Wickett climbs into bed by himself and says he wants to snuggle with one of us, but he’s usually asleep by the time I finish with Boba.

9:00 pm–Wickett wakes up. He goes potty. He goes back to sleep fairly easily.

9:45 pm–Boba wakes up. I have to bounce on the ball to get him back to sleep.

**This continues on and off until maybe 12 am, with the boys typically wake up anywhere from 1-4 times. Each. Usually they are easily guided back to bed, but it’s still disruptive.

10:00 pm–I get into bed, knowing that the night will not be restful. But getting to sleep is often challenging, as we are just waiting for the other proverbial shoe to drop. I have a hard time letting myself fall asleep, knowing that I am just going to be woken up soon.

11:30pm–Boba wakes up more fully. Over the next 30 minutes I’ll get him back to sleep, go back to bed myself, only to have him get up again 10 minutes later. Just enough time for me to sort of fall back asleep and get really annoyed when I am woken up again. After 3 or 4 times I give up out of exhaustion (emotional and physical) and just go get in bed with him.

Approximately 10 minutes after I’ve gotten Boba back to sleep and fallen asleep in the twin bed with him, Wickett (whose twin bed is just across the room) wakes up and is wired like Al Pacino at the end of Scarface. We re-dose his Clonidine, chase him around the house, hold him in a therapeutic hold on the couch (basically like a human straight-jacket), until he finally calms down enough to go back to sleep. I get in bed with him.

3:30 am–Boba wakes up again and I go back over to his bed.

Anywhere between 4:30 and 5:30 am–One or both of the boys wake up for the day.

That’s not a bad night, that’s not once or twice a month…that’s pretty much EVERY night. *THAT’S* what I mean by “short on sleep.”

I share this not to make you feel sorry for us, not to have a pity party, but because it’s the reality of our life (and so many other families who have kids with ASD), and it’s part of this journey I’m sharing. It’s hard, and we’re working on it (constantly), but it’s HARD.

Namaste.

This journey we are on

Over the past two and a half years, I have started this blog several times. But I never published. Perhaps it felt too “close,” too personal, too soon, too…something. But I suppose enough time has passed where I have some perspective and feel ready. Well, as ready as possible.

Blogging started out as a way to help me process through the challenges I was facing, and in reading others’ blogs I realize that there can be much comfort in knowing that other people are facing the same challenges. So I hope that by sharing my stories, perhaps some of you will be comforted…or at least I will have made you laugh.  🙂

This blog started out as a “parenting-on-the-autism-spectrum” blog, but I have realized that there is much more I feel the need to process. So this blog will be a bit of parenting, a bit of autism, a bit of faith, a bit of sustainable living, and more thrown in. But here is the first blog entry I made (January 4th, 2011) but never posted:

‘On August 25th 2010, our son was diagnosed with mild/high-functioning autism.

It has been just over 4 months since the official diagnosis.

But it has been longer since we suspected it, since I worried about it and felt inadequate and helpless, since I felt him slipping further away from me and yet powerless to stop it.

But now we know.  The diagnosis is heartbreaking and validating and anxiety-inducing and a relief all at the same time.  No one ever wants to have to hear that about her child, but it is the diagnosis that is now making it possible for us to get him the help he needs…the same diagnosis that has sent me into a tailspin, grasping at the grief process and trying to navigate this new territory.  Without a map.  Without a guide book.  Away from family.

I understand logically that the diagnosis is ultimately a good thing, but my heart is just taking awhile to catch up to my head.  And that’s a lot of what this blog is about.  The heart divide.  My head and heart rarely truly being in the same place but working towards that synthesis.

I can’t promise that it will always be uplifting and inspiring…but I promise it will always be honest.”