Dun dun DUUUUUNNNNNNNN!

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Well, let’s just skip past the fact that I haven’t posted in ages.

*pause to allow you to skip past*

Thanks.


 

Our whole family is soon embarking on a dietary adventure that will no doubt be incredibly challenging. I figure that the opportunity to blog about it will allow me to 1) process the journey through writing and 2) keep friends and family (and total strangers…hi!) up-to-date on what’s going on in our crazy world.

The short version: The GAPS diet. Stands for “Gut And Psychology Syndrome.” Read more about it here.

ImageThe longer version, for those who are still with me:

Essentially, Wicket needs a gut “reset.” He has what is sometimes referred to as “leaky gut” syndrome, meaning that there are microscopic perforations in his intestines that let things out that are supposed to stay in, and let things in that are supposed to stay out. It is often caused by systemic inflammation and dysfunctional immune response, but it brilliantly also *causes* systemic inflammation and dysfunctional immune response. Neat-o! He also has intestinal yeast overgrowth (also neat) and a list-so-long-it-is-vomit-inducing of foods that he has mild to severe intolerances to. Neat thing #3.

So the GAPS diet is a way to help heal his gut and get all of his systems playing nicely together. There is a strong “gut-brain” connection, essentially meaning that we see behavioral manifestations of his GI dysfunction. He doesn’t have traditional food allergies (like peanuts or tree nuts where people immediately get hives and trouble breathing, etc.). Food intolerances or sensitivities have a delayed immune response of anywhere from a few hours to literally days or weeks, which makes it hard to pinpoint what the offending foods are.

The GAPS intro diet is a few weeks of intensely boring yet necessary dietary changes that will lay the foundation for the healing to take place. We’ll make a lot of homemade bone broth, soups from that broth, fermented vegetables, and boiled meat (*sigh*). We add easily-digestible vegetables like butternut squash, cauliflower, broccoli, and onions. The stages following slowly start to add in foods that are harder to digest, introducing them carefully so that offending foods can easily be identified. There’s a very specific list of foods that you can and can’t have on the GAPS diet.

The kicker? We’re ALL doing it. Wicket, Boba, Tim, and I. Part of it is solidarity with Wicket to show him that we love him and support him; part of it is to make it easier on all of us (it seems pretty crappy for us to pig out on pizza, Indian food, etc.while Wicket is eating boiled meat and bone broth…couldn’t blame him if he went Al-Pacino-at-the-end-of-Scarface on us); but part of it is also to give all of us that same “reset.” I have gained weight (a topic that is a billion posts in itself), we all feel sluggish, and we suspect that Boba also has some undiagnosed dietary issues. Heck, maybe Tim and I do, too.

To tell you the truth, I am excited. And scared. Well, excited AND scared (thanks, Sondheim!). This diet is INTENSE, y’all. The prospect of having to get a challenging 4 yo and 6 yo to eat kimchi makes me want to stick a fork in my eye. BUT. But. The stories I’ve read, you guys. The stories of healing, of lightbulbs going off, of relationships being repaired, of progress made…well…I’m excited. And scared.

Thanks to all of you for your support! If you’re not already following the blog, be sure to subscribe and you’ll get an email when I’ve posted.

Cheers,

~Lisa~

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Kimchi, y’all! I made it myself!

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Three Years an Optimist

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Wicket and I went to the playground by the fire station this morning. Boba was still grouchy and not feeling well, so he stayed home. It’s been awhile since just Wicket and I had time together, by ourselves. When Tim and I “divide and conquer,” our typical weekend plan of action where he takes one child and I take the other and we go our separate ways to try and get them to chill the eff out, Tim usually takes Wicket and I take Boba. So it was nice, just the two of us.

The playground was funded by the Jonesboro Optimist Club, so it’s called Optimist Park. I like that. I like to think of myself as an optimist. It was abandoned this morning; we had it to ourselves. “Why do we have it to ourselves?” he asked. “Because no one else is here, babe.” “Why is no one here?” “I don’t know. But we have the whole place to ourselves.”

There’s a paved path that goes around the outside of the playground, around the fire station, and back to the parking lot. A nice, big circle. When we go, the boys bring their scooters and love to scoot around and around the big circle. I follow on foot, hoofing it a bit to get some exercise and to try my best to keep up. There are some places where the path crosses the parking lot, and my impulsive boys don’t always stop when they’re supposed to.

Today, Wicket was FAST. Scooting his little booty off. We did three laps together, and each time he got further and further ahead of me until finally I was on one side of the fire station and he was on the other, where I couldn’t see him. He was on the side where the path crosses the parking lots and goes awfully close to the street. I had a moment of near-panic, but reined it back in and trusted that the countless lessons of “Stop and look for cars when you see the yellow lines” would pay off. I sat down on a picnic bench near the playground and just…waited. I’d be lying if I said I wasn’t poised to hear brakes screeching, a child’s voice yelling, etc. But in a minute (that seemed like longer), he came scooting around the corner of the building.

He came over to where I was sitting and wanted to know why I stopped. “It’s so hot, little man. I’m going to drink some water and do some work.” “Do I have to stop?” “No, hon. You go ahead.” He decided he wanted to run this time, so he proceeded to run around the big circle twice, his little arms pumping like crazy, a determined look on his face. I didn’t follow him, just did some reading (Reformation Project!), and…waited. And he was fine. Two times around running, and he came running back to me, sweaty and grinning.

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And then it hit me…today is August 25. Three years ago, on August 25, we received Wicket’s autism diagnosis.

I remember the day in vivid detail–the various steps and tests along the way, resisting the urge to reach out and help him when they asked him to do something he couldn’t do, carrying 4 month-old Boba in the Ergo carrier all day, the prickly feeling in my skin when they finally said the word out loud, the silence in the car ride on the way home as Wicket finally napped out of exhaustion and Tim and I tried to allow things to sink in.

GOOD LORD, we have come a long way in three years. All of us. Wicket, in his skills and adaptations, his personality, strength, courage, curiosity, affection; us in our ability to handle the challenges. And while we still have many, while we still doubt and question and shake our fists at the sky occasionally, we are growing and adapting along with him.

Wicket’s little voice calling across the playground snapped me back into my connection with him, and he asked if I could come play with him for awhile. “Of course, sweetness. Let me just finish up here.” But I didn’t ever get back to my reading, because I got caught up in watching him play, watching him PRETEND to put out a fire on the playground (suck it, “no pretend play skills”). In the pic below, he’s holding the “hose” in his hand.

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And a few weeks ago, on this same playground, I watched him run and play with a new friend, a total stranger he met…he asked this little boy his name, told him his own, and then proceeded to chase him around like a maniac. They laughed and squealed and I smiled, thinking how one day not too long ago we wondered if it’d be difficult for him to make friends.

So…while this anniversary leaves me with mixed emotions, today I am choosing the positive. Choosing to be an optimist. He’s come so far and grown so much. He is an incredibly bright, adventurous, affectionate boy with so much potential.

Optimist Park indeed.

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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.

TGIF? How about TGIM…

Fridays on facebook, I always see a bunch of posts about how glad people are that it’s the weekend, TGIF, etc…  But truthfully, weekends are always a challenge for us. There is not the same structure as the boys have at school, and they both (Wickett in particular) thrive on structure.

People often ask us what our plans are for the weekend, and a typical response is, “To make it through until Monday morning.” This is mostly a joke, but there is certainly an element of truth to it. We are somewhat limited in what we can do with the boys due to many factors (behavioral issues, finances, lack of appropriate things to do nearby, etc.), so we often feel like we’re scrambling and struggling just to keep them from beating the crap out of each other and destroying the house.

Not trying to get all “poor us,” but just being honest about how the weekends can be rough. We love having the time with the boys, but weekends like this one where weather will likely keep us indoors a lot, well…send prayers. 🙂

Welcome to Holland

The original title of this blog was “Loving Holland,” and I want to explain why. The following essay was written by Emily Kingsley.  I find it to be the heart of what we are trying to figure out on this new journey, and I re-read it often when I find that tailspin heading out to sea.

Welcome to Holland

by Emily Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.