Month: May 2017

LET ME TELL YOU A (SOCIAL) STORY…

In our office, we talk a lot about the use of social stories, as a way to help the people we support manage new or challenging situations.

Social stories use a specific criteria, and use easy to understand sentences with information that is fact rather than opinion.  A good social story will include photos that are specific to the situation and to the person who will use the story. ​

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Not long ago, we began working with a behavior specialist from our Supporting Success program.  She talked with us about any concerns we had for our son, and asked about any challenges we were currently working on with him.  At the moment, the biggest difficulty is managing transitions, especially when he’s unable to do something that he really wishes he could do.  Of particular difficulty is being able to shop at Target and leave without visiting the rest of our shopping mall.  On a day when we have a lot of free time, we can visit all of his favorite places, however sometimes that’s not a possibility.  Managing that disappointment can lead to a tantrum which can lead to a meltdown.  On some days, simply the number of other people plus the bright lights, colors, music, and smells can make being in a place like that painful.  This can also lead to meltdowns, so some days it’s just not good to even try working on these difficulties.

Many before me have written about the difference between a tantrum and a meltdown, and how a meltdown can look. There is always that fear that a stranger will watch judgmentally as our son loses all ability to cope. It’s a raw, painful time for him and for us, and we feel completely exposed emotionally when it happens. Most excursions involve so much parental reconnaissance so that we can re-route or block his view of something that might set him off. Often, the seemingly easier thing to do is to avoid the triggers. All of the planning and ongoing adjustments take so much energy that we tell ourselves that it’s just easier to skip it.
Avoiding the potential stress of a situation doesn’t help him in the long run, because it doesn’t get to the heart of why these trips out can be so hard. Discovering the reasons behind behaviors afford us the opportunity to support our loved ones in the most effective way possible.
I do not advocate simply seeking to remove certain behaviors.  There are absolutely good reasons for things like stimming, hand flapping, spinning.  The more you know about why these are beneficial, the more accepting and supportive you can be.  But being able to make transitions from one scheduled event to another is an important life skill that is helpful for everyone.  So that is what the social story focuses on in our case.

A social story introduces the person who is the “star” of the story.  In this case, our son is the star, and his photo is included.
In this story he can read that sometimes we need to take a trip to Target to buy things for our family. He can see a photo of the store, so this makes it a very specific social story about Target. If you are working with someone who needs support simply going to any store, you can talk about grocery stores and other types of stores.  The advantage to doing that is that many of our amazing loved ones are very “concrete” thinkers- if you show them specifically a photo of one type of store, then there is a possibility that they will focus only on that store.

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He then can read that if we are shopping for specific items, his mama and papa may show him our shopping list.  This is how we know what we need to buy.

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The story goes on to describe, very simply, the subsequent steps of picking up the items we need to buy and putting them in our cart.  Then it describes how we pay and then leave with our items to go to the car.

The important point about this story is that it also explains to him that if there is time to visit the other stores in the mall, his mama and papa will tell him so that he knows which stores he can visit.  There are no opinions in the story, only facts.  And those facts are detailed out to him in around 10 sentences with photos to match each step of the process.

Social stories are great for anything from going to see the doctor to visiting family members. Anything that you wish to prepare someone for can be used as the basis for the social story. Reading a social story for a subject such as going to the store can be read once a week in preparation for the actual event.  And this is precisely what we did- he carried his stories around with him, asking everyone he knows to read them to him. After seeing how well he took to them, I decided to take him to Target today as a test.

The results were really intriguing.  We talked the entire time about what to expect, and what we would do after we paid.  My intent was that we would buy the thing we came for and then leave.  It was clear that this might not have the desired result, and I made a decision to alter the plan slightly.  I am sure that I probably should have stuck to the original plan, however I am one of the experts in his signs and signals, and I just knew that we’d head down a very bad path.  And one part of his story is that we might decide that there is time, so I decided (and explained to him) that we could walk through the mall to the pet store and then come back. He did well with this, and although he asked several times for the one thing he wanted, I explained to him that we might have time for that on our next visit.  After explaining that several times, he seemed to understand.

It was not any less tiring for both of us, in fact he fell asleep on the way home.  My anxiety levels remained quite high, but I was very proud of what he’d accomplished.  And now he knows what a successful shopping trip feels like!

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STRESSED IS “DESSERTS” SPELLED BACKWARDS

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I sat down last week to write a new post about stress management, and found myself deleting everything.  Sometimes we need to spill it, just to get the stressful bits out, and it comes out sounding pretty bleak.
I think that it’s rather important to recognize that there are times when it feels hard to manage stress, and I have come to realize that I have several tools in my Arsenal of Coping.  I also recognize that these are not necessarily the coping strategies that should or could be used by everyone, so please take this more as a way to open up the discussion about how we manage our stress.

Cleaning

spring clean

I’m really quite lucky; I am married to someone who understands pretty much all there is to know about me, and he’s truly supportive of my…quirks.  He knows that when he hears the sounds of me scrubbing the stove, I’m stressed/anxious/nervous (or his mother is coming over) and he pops in to check on me.  Most of the time, stress cleaning is precisely what I need to do to process whatever is on my mind.  Once in awhile, though, I need something more.  He gets that about me, and wants to be there in case I need something more.
Today I discovered a horrible truth: the inside of my stovetop is DISGUSTING.  I mean really, when was the last time you lifted up the top of your gas stove and looked underneath?  The only thing worse was the day I decided to clean out the filter in our dishwasher.
Besides being able to utterly destroy grease with the scrubby side of a sponge and my Simple Green cleaner, there is a more basic tool at work here.  My brain, searching for some way to control my environment, stretches out to one of the few things that it can control: the kitchen.
Now, I know that I’m a control freak.  I prefer control enthusiast, however, and that part of my brain needs to be able to fix something and see an immediate result.
Since I can’t “fix” many parts of my life in this way, cleaning is a great (and highly productive) way to process that feeling.
I also tend to burn through feelings pretty quickly- where my husband tends to sit on an emotion for a long time, turning a thought over and over in his head for hours, days, or weeks.  I can feel the thing, turn it over and look at it for a moment or ten, figure out what I need to do and then I’m done.  I move on to the next big thing, because that’s just how my brain works. See how we’re all different?
Sometimes it’s hard for me to relate to people who spend weeks on an emotion, and I’m working on that.  I think that the biggest lesson for me here is that I need to make sure I’m patient with people who take longer on something!

Running

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Y’all, it’s COLD.  I’m not running till the spring, and that’s just going to be the way of it.  But once it’s warmer than 55 degrees out, I want to feel the pavement beneath my feet and the sun on my skin.
Now, I will say that I’m really an awful runner.  I will never say that I’m not a runner, because I conquered a half marathon with an IT band injury.  I have never felt so badass (until I nearly passed out).  I limit the distances of my runs now, to prevent a recurrence of the injury.  I say that I’m an awful runner because I literally complain the entire time.  My husband runs with me, and he can attest to this fact.
That said, running is cheap therapy.  When I’m running, I’m not an autism mom.  I’m not an ADHD mom.  I’m not needed by home or by work, I’m needed only by ME.  I focus on the breathing in and out.  Breathe in (count 1,2,3), footfall.  Breathe out (1,2,3), footfall.  I space it exactly like this and feel the sun on my face.  The wind softly kisses my skin, and when I’m really feeling amazing, my arms go out to my sides as though I could hug the entire world.  I smile when I reach the top of that hill that’s been kicking my butt for six months, and I grimace as my knee lands incorrectly.  I sweat, I cry, I laugh. I can quite literally run the gamut of emotions in one five-mile run.  And when I get home and the salt in my sweat begins to dry, I can feel pride in myself for doing something that I used to say I’d never do.

Actual therapy

Okay, it’s really truly crucial to state that therapy is a GOOD thing.  When you find the therapist who matches your style and who challenges you to see things in a way which will allow you to grow and feel strong, then you have a true partnership.  It’s in part about being able to get things off your chest, but it’s also about arming yourself with the proper tools.  I have never found that, but it’s something that I hope to find someday.  That said, give me your dirty kitchen and I might just have everything I need.*

Reconnecting with Friends
I struggle with this.  Or, I thought I did anyway, until I posted something on Facebook that really helped me see that I have a lot of people in my corner.  Sometimes the electronic disconnect is a very bad thing.  Suffice it to say, I miss seeing my friends in person, and now have a standing BFF date with my best friend every two weeks.  This past week, she came over and we watched movies and made lavender-scented therapy putty. OMG.  It smells so amazing.

Support Groups/Caregiver Groups
Yesterday I presented to a group of parents who meet monthly to hear presentations specifically relating to raising kids on the spectrum.  The kids have supervised play and the parents get to have two hours of helpful information.  It was incredible to be around parents like me, which is one of the major personal benefits of working where I do.  So while this wasn’t a support group per se, it was a group meeting regularly to discuss topics that relate to our life.  There are also about a million groups on Facebook, but I recommend using caution before you fall down that particular rabbit hole.  Some groups have less than stellar admin policies, and often I have found myself in the midst of a discussion around controversial therapies.  No bueno, in my book.  Find a group that matches your personal philosophy, and spend some time reading the posts once you’ve joined.  If you don’t like what you see, you can always leave that group.  The same is true of course for groups in real life, I think that it’s crucial to find a group that makes you feel comfortable.  Talk to the group organizers ahead of time if you have concerns or questions, and then visit the group a few times.  There’s nothing saying that you have to contribute, and you’ll gain a better understanding of the scope of the group.

I hope that this has given you some ideas, but I’d love to hear how you manage the stress!  Please post a comment 🙂


*No, I’m not coming to your house to scrub your stove.

Respite- you need it more than you know!

(photos above represent glimpses of our first respite weekend.  Top center: a serene path at Colgate University; lower left: the welcome packet that awaited us in our room; lower middle: a gorgeous gift basket filled with yummy treats, a bottle of wine, and two wine glasses; lower right: a selfie of us and a gorgeous chandelier- not our best photo, but just LOOK at how happy we are!)

​It was July of 2016, and my husband and I were about to have something we’d never had: a weekend away, just the two of us.  Think about those words a moment, if you would.  We haven’t been married all that long, five years, but we have not had that time away since before we were married.  Speedy was with us on our honeymoon, after all, so this was an epic event in our lives.
I mention respite and its importance in a lot of my posts.  Think that’s an accident?  Heh.  Um, no.
Parents of kids with different abilities work incredibly hard.  Please know that I acknowledge the hard work of all parents.  I was a parent of at least one typical child, so I do know that parenting in itself is challenging.  But if we’re being honest, it was kind of a walk in the park compared to how we parent now.

Tell me if this feels familiar:
*You wake up before the sun (and before the sons), hoping to get some coffee in your system before they’re up.  If you’re extremely lucky, you might be able to hop in the shower and get dressed, but that’s usually rushed.  Bleary-eyed and exhausted, you help two children find clothes and get into said clothes.  I cannot stress enough how much this resembles herding cats who are all following a different laser pointer.
*Once the kids are dressed, and after you have broken up at least three arguments, it’s time to make breakfast.  This has essentially come to frozen waffles and drinkable yogurt because this is all they’ll eat and at least they’re getting protein and grains, right?
*This all happens with the aid of a picture schedule and a LOT of reminders and redirects just to accomplish one thing.  All the while, two boys are sitting behind you and humming Christmas carols in February because why not?  (This is actually happening at this exact moment)
*You have to prompt for toothbrushing and actually supervise said brushing of teeth in order for it to happen.  *You have to prompt for toileting and yes, you have to supervise that as well.
*You have to prompt to put on a left shoe.
*You have to prompt to put on a right shoe.  Oops, now one is crying because he insists on wearing his snow pants even when it’s 50 degrees out, and you’ve forgotten.
Eventually, they’re on the bus and now you can rush around to finish getting yourself out the door to go to work.

Y’all, I’m tired.  And that was just one part of one morning I’ve described.  You know what this all feels like, because you’ve been here before.

R-E-S-P-I-T-E

Early last year, we connected with an organization in our area which provides respite weekends for couples.  It’s a time to reconnect, to get to know one another again, to remember why you are the dynamic duo that you so clearly are.  Locally in the Central New York region, please do reach out to www.davidsrefuge.org .  They’ll have you fill out an application and they will ask for documentation of disability (of the person for whom you provide care).  They work with several area bed and breakfasts and small hotels to provide the perfect weekend getaway. I mean, they thought of everything.

For two whole nights, we slept in a luxurious king-sized bed with NO CHILDREN IN SIGHT.  And believe me, I double checked the bathroom to make sure there wasn’t a child hiding behind a door or something.
For two days, we relaxed, enjoying our first couples massage and slow walks around the campus of nearby Colgate University.
For one glorious weekend, we were just… us.  We weren’t someone’s parent, we didn’t have to prevent a meltdown, we didn’t have to do one single thing that wasn’t about us.

Let me just tell you, respite in the form of an entire weekend doesn’t happen often.  We are booked for our next weekend in July of this year, but mostly we take respite in smaller doses. So I get it when you read this and think there’s no way to make it happen.
Respite can come in the form of an hour or two.  Go down to Wegman’s, buy a latte, and just walk around looking at all of the things that you never have a chance to see.  Go to the park and just sit still.  Close your eyes and hear the sounds around you.  Notice how your children’s voices are not heard?  Yeah.  That.
The thing that you really need to know about respite is that you need it.  There is an analogy that resonated with me really well, so I shall share with you.  When you’re on a plane and the flight attendant is reading off the safety instructions during pre-flight, they always mention that should the oxygen masks drop down, parents (and caregivers) should put the mask on their own face before assisting their child.  Do you know why this is? It is because we are far more able to provide care when we care for ourselves first.
Statistically speaking, caregivers of those who are autistic are prone to depression and anxiety. There are studies from around the globe, all showing the same thing: that if you are a caregiver, you are much more likely to be experiencing depression.  The rates for divorce among “spectrum families” are higher than neurotypical families, too (23.5% versus 13.8%, according to this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928572/  ).  The point is, you need time to breathe life back into yourself, yourselves, and you need to do it soon.

I ask you, for your own benefit, to identify ways for you to regularly receive respite.  This could be a weekly thing, or even once a month, but it needs to happen.  Connect with a family member, a friend, colleague, college student, anyone who you can work with to provide care so that you can have a break from caregiving.

Sources:
Hartley SL, Barker ET, Seltzer MM, et al. The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder. Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43). 2010;24(4):449-457. doi:10.1037/a0019847.

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THE ABC’S OF BUILDING A SENSORY SPACE

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For many kids and adults with ADHD and/or who are autistic, there are are certain sensory needs involved in managing daily life. Some people like my Wonder Boy are sensory seekers. He smooshes firmly into anything he can, and this firm approach to life helps him to know where his edges are. He was a typical seeker- he walked up on his toes all the time, he needed to have brushing therapy and joint compressions. He likes his Body Sock and used to prefer his clothes on the snug side.

Other people are like my 10th grader. He’s a sensory avoider. He strongly dislikes anyone to touch him, he keeps his fingernails long so that nothing will touch the pads of his fingers. He doesn’t like tags on his clothes, and bright sunlight is painful to his eyes.

Figuring out what’s needed really involves a fair amount of trial and error. Through the help of occupational therapists, we were able to try out some items that helped Wonder Boy to get the sensory input he was so desperately seeking. Items like stretchy gloves, bracelets, compression clothing, and weighted blankets were all tried. We’ve used balance boards, peanut balls, and squeeze vests. There have been so many items that have come and gone that I cannot possibly remember all of them.

As a parent, the task of narrowing down the vast quantity of sensory items is really daunting. We have so much to think about daily, and finding the right sensory diet is key to your child’s well-being. When they feel good, we can take a moment to breathe a sigh of relief.

Those who know me personally know that for 8 years I worked from home. This was ideal because I ended up needing to be home for five days a week of therapy for Wonder Boy, and it is so much harder to manage with both parents working outside the home. I was already working from home when I had both Speedy and Wonder Boy, so I suppose that the silver lining was that I didn’t need to upheave our already chaotic lives when we realized that WB needed help.

For all of those years, because I was in sales, any and all available storage space in our apartment was dedicated to my samples. It was… overwhelming. My husband’s happiest moment when I changed career paths was when we were finally able to hand all of those items off to my former boss. We suddenly had closets again! And I was able to do something I’d been contemplating since the day we moved in: create a nook for the boys in one closet. We have a closet that we refer to as the “Harry Potter” closet- it uses the space beneath the stairs and has a short door on it. Where it is in relation to the building means that it’s also nice and warm, as it sits over the room where the boilers are.

This newly empty room was a blank canvas, and as we had already tried a variety of items, we had narrowed it down to the items that are currently providing the most benefit to WB and Speedy. Fortunately for me, WB has his services coordinated through an agency where there is an Autism Lending Library.
Okay, so I also work there, and this is the same amazing place where WB went to pre-K. I love being a part of this amazing place, and I just wish you all lived here so that you could get services here! That said, many of you are receiving some sort of service coordination, and if you are not, we need to talk- I can help you track down resources!
The Autism Lending Library has a bit of a deceptive name- it’s not just for people who are autistic, it’s more of a sensory resource room.
Through the ALL, we were able to try out a stretchy  Body Sock and a Yogibo for the new sensory corner. Once we knew what would work, we ordered items for the room. The Yogibo was too big and FILLED the room, so I opted for a smaller bean bag and the body sock. I then hopped onto Amazon and found a really cool color-changing light, reminiscent of the 70s. Another great resource is Target’s dollar section.

I also ordered a “mermaid” pillow, which is a new trend with two-color sequins covering the pillow. Swipe your hand one way, and one color appears. Swipe the other way, and the second color appears. It’s pretty addictive, actually. These kids didn’t get this from nowhere- I’m a sensory seeker too!
​I found color-changing glitter-filled balls and light-up wands, which went into the room. Last but not least, the weighted lap blanket and marble maze fidget that were made for me by a friend.

What will work for your loved ones may not be the same, so it’s trial-and-error for a bit. I recommend looking for an Autism Lending Library in your area (there are quite a few around the country), or asking friends who may have these items if you can borrow them for a time, to see how useful they’ll be.

Here are photos! I really had fun with my “models”! Below are links for the light that I mentioned as well as another light that I put in their bedroom for easier bedtime transitions.

THE ABC’S OF BUILDING A SENSORY SPACE

Post 6

For many kids and adults with ADHD and/or who are autistic, there are are certain sensory needs involved in managing daily life. Some people like my Wonder Boy are sensory seekers. He smooshes firmly into anything he can, and this firm approach to life helps him to know where his edges are. He was a typical seeker- he walked up on his toes all the time, he needed to have brushing therapy and joint compressions. He likes his Body Sock and used to prefer his clothes on the snug side.

Other people are like my 10th grader. He’s a sensory avoider. He strongly dislikes anyone to touch him, he keeps his fingernails long so that nothing will touch the pads of his fingers. He doesn’t like tags on his clothes, and bright sunlight is painful to his eyes.

Figuring out what’s needed really involves a fair amount of trial and error. Through the help of occupational therapists, we were able to try out some items that helped Wonder Boy to get the sensory input he was so desperately seeking. Items like stretchy gloves, bracelets, compression clothing, and weighted blankets were all tried. We’ve used balance boards, peanut balls, and squeeze vests. There have been so many items that have come and gone that I cannot possibly remember all of them.

As a parent, the task of narrowing down the vast quantity of sensory items is really daunting. We have so much to think about daily, and finding the right sensory diet is key to your child’s well-being. When they feel good, we can take a moment to breathe a sigh of relief.

Those who know me personally know that for 8 years I worked from home. This was ideal because I ended up needing to be home for five days a week of therapy for Wonder Boy, and it is so much harder to manage with both parents working outside the home. I was already working from home when I had both Speedy and Wonder Boy, so I suppose that the silver lining was that I didn’t need to upheave our already chaotic lives when we realized that WB needed help.

For all of those years, because I was in sales, any and all available storage space in our apartment was dedicated to my samples. It was… overwhelming. My husband’s happiest moment when I changed career paths was when we were finally able to hand all of those items off to my former boss. We suddenly had closets again! And I was able to do something I’d been contemplating since the day we moved in: create a nook for the boys in one closet. We have a closet that we refer to as the “Harry Potter” closet- it uses the space beneath the stairs and has a short door on it. Where it is in relation to the building means that it’s also nice and warm, as it sits over the room where the boilers are.

This newly empty room was a blank canvas, and as we had already tried a variety of items, we had narrowed it down to the items that are currently providing the most benefit to WB and Speedy. Fortunately for me, WB has his services coordinated through an agency where there is an Autism Lending Library.
Okay, so I also work there, and this is the same amazing place where WB went to pre-K. I love being a part of this amazing place, and I just wish you all lived here so that you could get services here! That said, many of you are receiving some sort of service coordination, and if you are not, we need to talk- I can help you track down resources!
The Autism Lending Library has a bit of a deceptive name- it’s not just for people who are autistic, it’s more of a sensory resource room.
Through the ALL, we were able to try out a stretchy  Body Sock and a Yogibo for the new sensory corner. Once we knew what would work, we ordered items for the room. The Yogibo was too big and FILLED the room, so I opted for a smaller bean bag and the body sock. I then hopped onto Amazon and found a really cool color-changing light, reminiscent of the 70s. Another great resource is Target’s dollar section.

I also ordered a “mermaid” pillow, which is a new trend with two-color sequins covering the pillow. Swipe your hand one way, and one color appears. Swipe the other way, and the second color appears. It’s pretty addictive, actually. These kids didn’t get this from nowhere- I’m a sensory seeker too!
​I found color-changing glitter-filled balls and light-up wands, which went into the room. Last but not least, the weighted lap blanket and marble maze fidget that were made for me by a friend.

What will work for your loved ones may not be the same, so it’s trial-and-error for a bit. I recommend looking for an Autism Lending Library in your area (there are quite a few around the country), or asking friends who may have these items if you can borrow them for a time, to see how useful they’ll be.

Here are photos! I really had fun with my “models”! Below are links for the light that I mentioned as well as another light that I put in their bedroom for easier bedtime transitions.

NEURODIVERSITY LEADS TO GREAT THINGS…

NEURODIVERSITY LEADS TO GREAT THINGS…

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I love this photo so much. In December, my mother the saint offered to help us with paying for family portraits. More on her later, she gets at least one post of her own. But first, this.

If you have kids, neurotypical or otherwise, you know that family portraits can be tricky. Newsflash- kids don’t stand still. Like, EVER. That is amplified by about 1,000,000 times when you have kids on the spectrum and one of them is a little bottle of ADHD energy.

I feel like this picture really shows the calm, gentle giants that are our older two sons in stark contrast to the pure kinetic energy that is the wee lads. I mean, have you ever watched someone with ADHD attempt to hold their bodies still? It’s difficult for me to watch in part because I am fairly certain I’d be diagnosed, but also because it is so clearly painful for my son who is constantly equal parts motion and sound.
The older boys are so calm with their brothers. Maybe it’s a side-effect of growing up with the chaos that comes with having siblings on the spectrum. Perhaps it’s their ages- one is off at college and is ready to take on the world and the other is halfway finished with high school and following in his brother’s footsteps.
We lean on them a LOT to help with the care the “little bros”, as they are fondly called, if for no other reason than our sanity. There will be another post about respite- trust me, it’s really important.
Did you ever see the Looney Tunes bit with Spike the Bulldog and Chester the Terrier? Spike calmly walking down the street, lumbering in the way that only a bulldog can, and Chester leaping over him and running around him in circles: “What are we gonna do today, Spike? Huh? Huh? Want me to pick up some bones for ya? Wanna play ball? Huh? Huh?”

That.

So much that.

The elder boys are absolutely Spike, each with their own personal Chester to run around them and entangle their long legs in spastic little boy energy.

It’s not easy to be a neuro sibling of someone who gets therapies five days a week, though it becomes less of a strain once all the kids are in school.
It’s not easy to watch your parents as they cry quietly over the fact that literally none of this was what they’d planned for.
It’s not easy to stay calm when your little brothers get ALL the attention from basically everyone.
It’s not easy to be the voice of reason when your parents are beyond upset with something your younger sibling has done- and you know full well that he couldn’t help it.

But here’s the thing- these young men have grown into the most accepting, understanding, and inclusive people I have ever met. And this is what happens for many kids who grow up with a sibling who has special needs. You see people as people, rather than seeing them as a disability. You see people in other places who just need a friendly face and someone willing to sit down and talk with them. You want to build this world to not only accept but to include EVERYONE. And that is a really amazing super power.

Here’s the thing about all of what I’m telling you: when I was my oldest son’s age, I had such hopes for the world, but I was utterly clueless until, oh, last year about what to do. But these boys… they know. They read and study politics. They study humanity and know what needs fixing and by crumb, they’re gonna do it. And they’ll lead movements of people with the same goal, the goal of making this world fit everyone, instead of just the people who fit a certain description.
The lesson here is this: Accept. Understand. Include. When we include people who are different from us, we all grow and become the best possible versions of ourselves.

 

Photo credit for all of these photos goes to Rachel Philipson, photographer extraordinaire.

YES, IT REALLY IS THAT CHAOTIC HERE…

YES, IT REALLY IS THAT CHAOTIC HERE…

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On one side of me is boy #4, a.k.a. WonderBoy, stimming and hitting himself in the head in what my friend would call a “mildly injurious manner”.

On the other side of me is boy #3, a.k.a. Speedy, yodeling at his breakfast.

Each is doing what makes sense to them in that moment, even if it perplexes me to no end.

One of the things that professionals will tell you about is the WHY behind these behaviors, but the fact is that on a daily basis the WHY isn’t as important as the WHAT or the HOW.  What I look for during this chaos is signs that it will all go south.  When WonderBoy starts hitting harder, I will gently redirect him.  When Speedy’s yodeling turns into a full-blown concert, it’s time to steer him back to the task at hand.  In the case of this morning, the task at hand is taking his medication for the first time.

ADHD is a tricky thing.  My husband and I (and my mom, who spends a lot of time with our chaos) spend an inordinate amount of time saying “What were you supposed to be doing?” to Speedy.  We can only give him one direction at a time, and it usually involves at least three redirects to the task.  Even getting him to cross the room and go into the bathroom is exhausting, and about 75% of the time he forgets why he was headed there.

We’ve spent years working in the world of ASD and SPD (Autism Processing Disorder and Sensory Processing Disorder) and tailoring everything around WonderBoy’s needs.  Speedy’s diagnosis was a year in the making, but leading up to that day we really had no sense of just how intense it had gotten.  We didn’t realize how exhausted we were until our first respite weekend- two whole nights of sleeping with no small humans in our bed.  Like I said, more on that topic soon.  It’s important and deserves an entire post.

As I’m typing this, Speedy zips over to me and says, “We really need to go fishing sometime soon.” and then walks away singing to a toy.  In two seconds, he’ll be in his room playing a tune on the keyboard they got for Christmas.  Five seconds after that, he’ll be running through the house yelling about someone taking over the world.

It.
Never.
Stops.

Did I mention how exhausting this is?

And yet- a ray of hope in the form of Adderall, and while I know it can take time for the medication to start showing signs of change, I am holding on to the hope that we’ll be lucky with this first attempt.  I do not know what to expect, but I know that he feels broken.  He is just as tired as we are, and he has not been able to escape the buzzing bees in his head.  He has not been able to avoid the burning desire to run.  He quite literally cannot keep his body still without an intense amount of help from us.  He has learned, at six, that meditation brings him five minutes of peace.