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How to (almost) break your autistic child & a few suggestions on how to help when you do . . .

imageThis is a cautionary tale, based on a true story. My story.

You don’t need to have a special needs child in your life to relate. I’m certain just about any parent can, and has, used a similar formula to the one I’m about to present to ensure a similarly awful outcome to any given day as the one I’m (somewhat reluctantly) sharing.

While I cannot guarantee your personal success, I’m fairly certain you could achieve at least a bad day by following my example.

Which I suggest NOT doing.

Before I begin, I want you to know I am not an expert, but I know a few things . . . I’ve done this crap before. I have four children. The youngest will be twenty soon and the oldest, twenty-eight. The ‘child’ used into this particular example is the oldest of my quartet of kiddos.

He is autistic and awesome and I’m pretty proud of the way I’ve raised him and all I’ve learned . . . that being said –

How To (almost) Break Your Autistic Without Even Trying

I find it best to begin the process of an unplanned, catastrophic day ahead of time by informing my child about our plans for the following day, this ensures he feels comfortable with what will be going on.

The stars don’t always align just right, but it’s helpful if he is just getting over an illness. Any illness will do, in this particular case, our culprit was pneumonia. He’d just finished a round of Prednisone and his mind and body were readjusting from the effects.

In our case, it works particularly well if my son didn’t get a restful nights sleep before I rouse and ready him the next morning. It doesn’t always matter, but it’s really helpful

I generally think it’s a good idea to go over our plans again before we head out, I find it gives my son, many folks really, a sense of security knowing how the day will unfold.

On this occasion, I used our morning time together to do just that. We went over the plan. First lunch, then his follow-up medical appointment, a bit of shopping, and a quick stop to the pharmacy for meds on the way home.

Everything was well and right with the world, so I thought. I’d no way of knowing what had already begun to bubble beneath the surface of his rather calm, almost cheerful countenance. I should have known. How could I not have known? It had been a rough and restless week for him.

IMG_1238Unlucky for both of us, I didn’t realize the countdown toward detonation had been triggered before I cut the first wire (okay, that analogy works better in my head than on a page.) I’m likening this situation to a bomb, wires everywhere, and they all look the same. If I cut the wrong one –oopsie– it starts counting down faster.

The day began fairly well, but then, I inadvertently severed the first wrong wire when I made the decision to stop somewhere we don’t generally frequent for lunch.

. . . . . . . . . . tick . . . . . . . . . . tick . . . . . . . . . .  tick . . . . . . . . . .

I could see his hesitation, but everything is a teachable moment, right? Stepping out of comfort zones is something I regularly work on with him. There’s a timing to these teachable moments though, I picked the wrong time. The salad bar and deli counter, filled with a multitude of choices, served as the knife I utilized to cut that first wire.

Ignoring what I should have recognized as minor distress and discomfort, I unwittingly snipped another wire.

. . . . . . . . . tick . . . . . . . . . tick . . . . . . . . . tick . . . . . . . . .

For lunch conversation, I decided to discuss some of the positive changes I wanted to implement into our family life, such as a new exercise regime, trying some new foods and forgoing some of the old favorites. I made sure to talk about new tastes and textures, I thought I was really sealing the deal by including facts and summarizing studies I’ve been reading. He loves facts.

Apparently he loves them less when those facts include things IMG_1259about why we should sustain life with better quality foods and things like, unbreaded chicken. Autism and breaded chicken chunks – it’s a thing. He has a hard time with change. He kind of hates it.

. . . . . . . . tick . . . . . . . tick . . . . . . . . tick . . . . . . . .

He seemed to perk up by the time we reached the office of his favorite doc. He quickly unperked when the doc ordered an allergy panel and handed him a paper for flu and pneumonia vaccinations while simultaneously talking about creating a nutritional plan, one that didn’t include breaded chicken. That wire wasn’t on me, the doc gets full credit as an unwitting accomplice.

. . . . . . .tick . . . . . . . . . tick . . . . . . . tick . . . . . . .

Obviously, I can’t always control the unexpected, but an unforeseen event that changes our plans is always a bonus when I’m inadvertently making sure our day will end up in a meltdown of some severity. The next wire snipped itself.

The unplanned plan buster had to be handled, (the unforeseen event being his brother locking himself out of the house) which meant instead of the shopping, which was next on the list, we had to make a u-turn toward home. I didn’t help matters by continuing to talk about the stuff we’d been talking about as we drove toward home. Changes. I didn’t even realize he was not even close to being an active participant in my rambling.

. . . . . . tick . . . . . . tick . . . . . .tick . . . . . .

When we got to the house, his safety zone, his sanctuary, I took the opportunity to snip another one of those pesky wires. I had a couple of calls to make, so why not take advantage of our time back home? We were there just long enough for him to get his bearings before I went on with my mission to deconstruct his psyche by telling him it was time to go again.

. . . . . . tick . . . . . tick . . . . . tick . . . . .

There were two things left on the list, shopping and picking up meds. By now, you likely know I sliced myself another wire, right? Actually, I think I may have just ripped out a handful with the next decision I made. Instead of a trip to the grocery store, I chose to enter the sensory hell called Costco.

. . . . tick . . . . tick . . . . tick . . . .

Made with Repix (http://repix.it)I find It’s best to visit Costco when they are super busy, just in case the vastness of the space, the harder than normal store floors, and florescent lighting won’t be enough to break my child. There will most always be guaranteed success if the aroma of several food product demos are wafting throughout the building.

I cut a few more wires while trapped in there.

I made certain we walked right passed a pungent salmon burger demo, and then . . . then, and I don’t even know why I did it, I lost my mind and suggested he try a taste. by the way, not defending myself, okay, a little bit defending myself I was completely sensory overloaded myself. Don’t forget, kids on the spectrum sometimes have mommas on the spectrum and our house should just be labeled, “Spectrum House, home of the Cook family).

. . . tick . . . tick . . . tick . . .

At this point, all the classic signs of an approaching sensory overload and emotional hurricane are present in both of us, we couldn’t get out of there fast enough.

One more stop, it should have been in and out, but I dawdled around and browsed the aisles just long enough to yank a couple more wires.

. . tick . . tick . . tick . .

I’m almost sure the ticking was now loud enough for everyone around us to hear. There was stimming, heavier than usual breathing, his Tourette’s was triggered, and he couldn’t  make make eye contact with anything other than the floor and a bottle of Ginger Ale.

*tick*tick*tick*

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By the time we got home, BOOM! Full on distress.

And it was all my fault.

The bad nights sleep, the constant coughing, breathing treatments, and coming off the prednisone – all working their magic before he even opened his eyes that morning, compounded by a day which did not go as planned . . .

How could it possibly not be my fault?

I should have known as it was happening how it would all end, right?

Wrong.

It’s so easy to blame ourselves and feel unwarranted guilt whenThe Pit and the Pity Pot things go awry. There is this negative little bully inside our minds, just waiting for things like this to happen so it can torture us, if we don’t stand up to it, we’re screwed.

We have to override that nasty little voice with our own.

I know it wasn’t my fault. I may have been a contributing factor, but it wasn’t my fault.

I didn’t plan it, it wasn’t my intent. Things happen. Plans change, sometimes things HAVE to change and we have to learn how to handle those changes. Guess what, so do our children.

Hey – we all make mistakes. It doesn’t matter if you’ve been a special needs parent for 2 years or, in my case, 28. This kind of day will happen. It just will, but it’s not the end of the world, just a bad day. You’re not a bad parent, you’re not a bad special needs parent. You’re human.

Sometimes I forget that applies to me as well.

Life is not usually going to cooperate with the needs and schedules, the likes and dislikes, our children have. They may be resistant to change, but that doesn’t mean they’re not capable of handling it.

We need to teach them (and ourselves) coping mechanisms; skills that will get them, and us through those rough days.

When my son was younger, we learned some amazing techniques from our Occupational Therapist. Joint compressions and brushing have saved many a day from ruinDeep tissue massage and weighted blankets have worked wonders.

One thing I’ve learned is this, once a meltdown has started, you often have to just let it run itself down. If you’re shopping, leave your cart and head for the car, return home if you must. Attempting to diffuse a meltdown in public is difficult and most often impossible.

I’ve seen parents struggling with a child during what looked much like a meltdown, but once they gave the child what he wanted, it stopped. There is a huge difference between an autistic meltdown and a tantrum. Sometimes it’s tough to tell the difference. The thing is, a tantrum can be stopped, a meltdown is an entirely different beast.

imageNow, as an adult, my son has an arsenal of coping techniques to choose from, and if he senses the storm brewing, he can often find shelter, but sometimes, he gets caught up in a tempest.

When this happens, we practice deep breathing, we talk if he wants to talk, we don’t if he doesn’t. Sometimes he needs to be left alone, play a video game, or listen to music. He’s allowed to check out, sit in a corner and stim, or whatever he needs to do to pull himself out of it.

Then when we talk. After. We try to figure out what triggered it. It could have been sensory overload, an oncoming illness, or something he misunderstood. Sometimes there isn’t an identifiable reason. It could have been something leftover from the day or week before.

If we can pinpoint it, we discuss ways we can prevent it from happening again and ways to handle it if it does. It’s taken hard work and perseverance on both our parts, but he has come so far from those early days when he was a puddle of flailing limbs and tears on the floor in the middle of the supermarket.

I used to wonder if a day would come when he would be capable of coping and it did. There is hope, there is. It’s hard to see it in the middle of the storm, but those dark clouds always pass.

We know every child on the spectrum is unique, what’s worked for us may not work for you, but that hope is there. You have to look for it sometimes, but it is always there and you’re not alone.

I know it can feel that way sometimes, that’s the little mind imagebully I was talking about. You are stronger and have more resolve than that voice telling you things will never change, the thing is, they won’t change on their own.

You have to seek out support and professionals who can guide and give advice, other parents who have been there, done that, and are still doing it.

So fear not when it seems you’ve almost, accidentally broken your child . . . they can’t really be broken.

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Tears & Tulips – My own Holland

 

I started writing a post this morning to kick off Autism Awareness Month, but I stumbled upon this one from 2011 and since I’ve not consumed nearly enough caffeine yet this morning, I’m going to start with this one . . .

I haven’t always liked living in Holland. I’d like to visit Italy, just for a day. There’s a part of me that feels a little guilty saying that, but I’d be lying if I said I never felt it. I’m sure many of you already know what I am talking about, for those of you who may be thinking I’m nuts because I don’t actually reside in Holland, not the real Holland anyway.

April is Autism Awareness Month, for some of us, every month is Autism Awareness Month. Every week, every day, every hour, every minute, every second, every moment, we are very aware of autism because someone we love is autistic.

Why Holland? Because in 1987 a mom named Emily Pearl Kingsley wrote a moving piece about having a child special needs child. Her analogy has touched many hearts.

Her Holland may be different from mine, different from yours, but the her trip resonates in some way with just about every special needs parent I’ve ever known.

Her description is about the experience, the moment you realize your forever plans have been forever changed, and while those plans you’d made would have been wonderful to experience, the unexpected upheaval of them can be a whole new kind of wonderful.

Welcome to Holland brings tears to my eyes every time I read it. The first time I read it In 1989, was ‘planning my trip’ to Italy. I was consumed with everything I would do while I was there.

I never made it to Italy.

You know what? My Holland is beautiful and I’m thankful to live amongst the tulips, but I’ll admit, every now and then I wonder what it would have been like if I had just made it to Italy. I planned my trip more than once and each time, I arrived in Holland.

I can say now, with hesitation, if I had the opportunity to go back and choose my destination, I would choose Holland. I know this without a doubt in my heart. It’s not always an easy place to live. People from other places will often come here for a visit, but some of them make you feel like you aren’t good enough because you’ve never been to Italy or to Paris. They never stay long though.

There are other visitors too, ones who arrive with love and acceptance and a willingness to learn the culture, they make my heart soar.

Some days I’m sad. I watch my boys try so hard and when they get knocked down it hurts. I know I can’t keep it from happening, they need to fall if they are to learn how to stand, but sometimes I swear if I could carry them, I would.

I don’t think sad is the right word. I’m not sad. I’m not angry, and I’m certainly not mourning. I’m not sure there is an actual word to accurately describe what happens in my heart sometimes. I am so proud of my boys. They face trials and hurdles every day, more than some people face in a lifetime, and sometimes I look at them and it just doesn’t seem fair. They shouldn’t have to work so hard while others sit on the sidelines, not even cheering them on.

Not everyone sees them the way I do. They avert their eyes or stare accusingly at them, at me. Maybe if everyone could just visit Holland and give it a chance . . .

People tell me how strong I am and how much they admire me, I just want to tell them I’m not really that strong person who can handle everything all the time. I get tired and I cry and I feel weak. They don’t truly reach out because they think I can do it on my own. I feel alone and hurt. This feeling though, is thankfully fleeting.

There will always be days I just have to fall upon my knees and ask God to renew my strength.

HE always answers my prayers and sends angels my way to lift me up and wrap me safely within their wings until I can stand. My children are my greatest source of strength and when I am at my weakest, I look into their eyes and find it.

How can something as fragile as they be so strong? I wish I had the fortitude they posses. At times, I envy them their innocence. It shields them from much of the pain the world tries to inflict on them.

I know the day will come when that innocence won’t provide the protection it does now, I just hope and I pray I am able to help them learn the skills they will need to protect themselves from it all and I will be able to instill in them such a strong foundation nothing will be able to uproot them from where they stand.

I have faith and I believe with everything in me they will be okay, God would not have given them to me if he didn’t think me worthy of the job. Maybe it’s the other way around. Perhaps they were sent here simply to teach me. I’ve already learned more from those boys than I could teach them in a lifetime.

I’ve tucked my old itinerary away in a special place, it’s been so long since I’ve taken it out, I’ve forgotten where I put it. When I am tempted to try to find it, I go out to play beneath the windmills. Holland truly is a beautiful place. I wouldn’t wish to be anywhere else . . .

Welcome to Holland by Emily Perl Kingsley (c)1987

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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. 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….and 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.”

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

(C) 1987 by Emily Perl Kingsley

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My proudest moment? I got a good one . . .

img_0796Day five, (or 296), of this blog challenge thing has me asking myself about my proudest moment. Still too lazy and moody to tackle day three.

How does one choose their proudest moment? I’m not typically one to toot my own horn, but I guess if I think about it, I’ve had my share of moments in life I’ve felt quite proud of myself. Some of those moments were big, monumental even, others were itty-bitty, perhaps even inconsequential in the grand scheme of all things pride worthy, but damn if I wasn’t proud of myself for accomplishing them, but choosing one to highlight

Gimme a sec.

I’m too often too hard on myself. I downplay my successes, finding some reason or external force to give credit for them. I don’t know why I do this, I really should celebrate in them, give myself some kudos and well deserved pats on the back, but it feels weird.

Still thinking . . .

There is this one thing, I’ve managed to rock this particular thing a few times and damn if even I don’t mind saying I did it well. I’m not the only one who’s ever done it of course, doesn’t make it any less awesome and magical and fricking awe inspiring, so I’m going to call this thing the thing I’m most proud of. Best thing I’ve ever done, like not just gold star worthy, but world fair blue ribbon, best in show, top of the class (every class) kind of worthy.

I made a human. Not just one, mind you, humans. I made humans. Remember that movie Castaway? When I watched that movie and the fire scene came on, I remember thinking, yeah, that’s kind of how I felt when I looked at my first little human creation.

It wasn’t easy, blood, sweat, and tears went into it. Poured my heart into it. To this day, people compliment me on my work, “Your kids are amazing!” and I pretend to be all humble about it, “Aww, thank you. I made them myself.”

My pride in this accomplishment extends beyond the act of making them, that was just the beginning really. Phase one in the creative process. It takes a long time to complete a human, a lifetime actually. Once that little rough draft breathes the breath of life you have to start molding it, and keep on molding it until it reaches a point in the life you gave it to take over and continue molding itself into what it will eventually become.

Yes. I called my greatest achievements it. I’m tired, you know, from the 27 years of molding and shaping I’ve done so far. Besides, it’s a thing I do, sometimes I call babies it. Sometimes I call them little bugs, smooshies, or squidgies too.

So yeah, my proudest moment has lasted far longer than a moment, I feel it every day. I made humans. Good ones.

Kudos to me.

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Holding His Hand

img_0580Sometimes I look at him and I don’t see him, not the way he is right now. I see the little boy he used to be, the one who snuggled up so close to me I could feel his heart beating and I mourn for those moments in some small way. I can feel him, the memory is that strong. I smell his little boy smell and I inhale the past like I won’t be able to breathe another breath if I don’t.

Yesterday, I held his little hand in mine. It was so tiny and so dependent on me to hold and guide him in the right direction, to lead him and keep him safe. That little hand of his held on tight. It wrapped around my fingers for security and comfort. I can almost still feel it, a precious hand safely tucked inside of mine.

Today, he held my hand in his. It was bigger than my own, and I held on tight, dependent on the comfort and security I felt within its grasp. My hand, the one that held on to his for so long, was being held. I was the one who needed guidance, I was the one who needed the security of a hand bigger than my own. I simply sat there for as long as I could with my hand tucked safely inside of his.

In that moment, my heart beat in time with his, I know it did. We were one. This amazing human being I once carried within my womb was holding my heart in his hand and I was so overwhelmed with emotion I feared he would think he’d done something wrong. He didn’t though, he felt it too, he understood and he simply held my hand.

When he was born and I cradled him in my arms, I never could have imagined a day when he would be the one to cradle me . . . sometimes I truly do miss the little boy he used to be, but oh, how I cherish and admire and respect the man he has become.

True Story – Mom Brain

Seriously, I do these things. In this past year I’ve put a book in the fridge, a package of ground beef in the bread cupboard, the television remote in the car, my phone in the pantry, and garbage in the laundry hamper . . . I’ll stop there.

I don’t even have little kids anymore. I think they may have damaged my frontal lobe somehow.

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