Tag Archive | ASD

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*

IMG_1267

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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They said . . .

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When they told me
he would never talk,
I taught him to sing.

I mimicked his little sounds
until he began to mimic mine.

When they told me
he may never walk,
I taught him to run.

I put his little hands in mine
and helped guide his feet
toward our goal.

I fell to my hands and knees
and raced along
the floor by his side.

When they said
he would not read,
I began showing him words
and teaching him sounds.

When they said
he would not write,
I gave him a crayon
and said you can,
and he became a poet.

When they said
he would live
in his own world
I opened the doors to mine
and waited for him to enter.

Now when they say things
I raise my voice to the heavens.

God hears me
and gives me strength
to help him overcome
the limitations
they say await him.

Crystal R. Cook

Listening With Your Heart – Autism Sings

Listening with your heart - Crystal R. Cook

He walks to the beat
of his own little drum,
the rhythm sometimes
gathers a crowd.
Some people sing along,
others simply
walk away.
There are those
who scoff,
they can’t hear
the sweet music.
Sad souls
listening
without
hearing.

My heart . . . it dances.

Crystal R. Cook

Wilson Wisdom – Autism, spoken VS written word, & anxiety.

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When Autistics speak, we need to listen . . .

Being autistic, it is sometimes hard for me to put my feelings into words using my voice, but with the written word I can say things much easier since I can see what I say and correct anything that I misspoke before anyone else can see it. Sometimes things that are bothering me I won’t talk about because I can’t put it into spoken words, if I try to, my point either comes off as not as I intended or it is misinterpreted because of the words I used.

To put it in a way easier to understand, when I speak it’s like a game of Scrabble, but instead of letter tiles I have word tiles, if some of the words I need are not available and I have to use similar words to get my point across it can lead to confusion. When I write I have access to all the tiles at once and it’s simple for my thoughts to come out, I still make mistakes, but not as much.

If I feel anxious I tend to deal with it on my own and tell no one since it is even harder to say what I need and I only bring it up when it is either resolved or when I really can’t do it on my own and I need someone else to help me.

When it comes to autism, the people around those with autism need to be vigilant about the mental state of the autistic person. With me, I can handle most things on my own and have an understanding of how my anxiety works (Some forms of my own anxiety require me to let it run its course when none of the other methods I have learned to use work or make it worse) but others may not have this understanding and cannot get through without help, mine comes from years of having to deal with it and with the help of my Mom (Crystal Cook) teaching me methods and helping me through them.

Some younger autistics have not yet learned to put such information to use so it is up to those around them to notice these moments of anxiety and help them through it, if you’re close to someone with autism I am sure you know the signs, I would list some, but not everyones signals are the same. For me personally it is just an anxious feeling or the feeling of dread or just full on confusion, each one has its own type of “Cure” and sometimes I just have to wait it out. If a person hasn’t figured them out on their own it is up to you to teach them to identify and conquer them.

For the past week I have had an anxious feeling that have been growing little by little each day. I believe it is cause by a mixture of changes happening around me and some just regular random anxiety that comes with the disorder I have. I have done every one of my usual “Cures” (Including talking to my Mom) and none of them have worked, that leaves letting it continue running its course and try again later if it continues to long.

Remember what I have said about keeping an eye on an Autistics anxiety tells, if you don’t help them discover them and learn how to conquer them they might never learn on their own.

Wilson Cook

He was dying . . .

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I am often asked if it’s true autistics are incapable of empathy, affection, love, compassion, etc.. I try not to let it get to me, knowing there are so many people out there who believe the myths and the misinformation regarding autism. I try to fight these notions by encouraging and educating those I can.

One of the most powerful tools I have at my disposal is experience.

This morning I spoke to my son, he was feeling sad, he and his grandma had come across a dying bird in the back yard. He posted this status update to his Facebook profile this evening ~

He was dying, my Grandma found him in the backyard, we picked him up and held him as he passed, I stroked his head making sure his final moments were of love and not of fear. We put him in a box with some tissues and some socks so he could spend his final moments in comfort, it was sad we couldn’t save him and we didn’t have him for more than a few minutes but I feel better for having been there for him. I made a difference in its life, albeit in the end of it.

Yes. Autistic people can feel empathy, deeply. They may not always be capable of expressing their feelings, every individual with autism is unique, they have strengths and weaknesses just like everyone else. There are many people not faced with the challenges my son faces who are incapable of the level of empathy my son felt today, holding that little bird. He is a good, good man.

Crystal R. Cook

Social Anxiety or Self Defense Mechanism?

My Anxiety Is Not Disordered by Cynthia Kim 

The article above provides some thought provoking insights regarding social anxiety and those on the Autistic Spectrum . . .

I found I could relate well to her assessment of certain individuals with social difficulties. If you know me, you obviously know I have social peculiarities. I don’t often care to be around people, I prefer talking via typing rather than gabbing on the phone. I don’t mind going for coffee with a friend, but I don’t particularly care to go to their barbecues, the nights out on the town, the movies, or the mall with them. I don’t know if I necessarily have social anxiety or if I am simply teetering on the edge of some misanthropic cliff, deciding whether or not to jump.

imageI find spending time with others to be draining, emotionally taxing, and generally uncomfortable. Even with people I love dearly, I need breaks. Decompression. I often feel I should say to them, “It’s not you, it’s me.”

The difficulty comes in explaining why. I just do. I am not afraid of people, well, most of them. I simply do not care for the vast majority of them. I don’t understand them. I love to watch them, study them, dissect them in my mind. I liken my people watching to the desire to take apart a clock to see how it ticks.

Social pretenses are somewhat lost on me, expected norms of interaction don’t come naturally whether it is within a group dynamic or one-on-one, I often feel a certain discomfort. I like being alone, I relish my solitude, but I also enjoy the company of loved ones, I just can’t seem to enjoy it for extended periods of time.

I am not anti-social, selectively and cautiously social is a better descriptor. There was a time I suffered through it all, when my fight or flight triggers were tripped I ignored both options and forced myself to muddle through, seeking and finding release and relief was not something I allowed myself.

Now though, I say no when I know it will all be too much. I steal away and take a few minutes to regain my center when I find myself in a situation involving others, only returning when I know I am able. I feel a certain level of comfort simply knowing I can do so, sometimes just knowing I can is enough to keep my composure.

As this blog article says, it is a self-defense mechanism for some of us. It’s a way of maintaining balance to a fragile portion of who I am. I know what anxiety is, I have social obstacles certainly, they can lead to anxiety if I do not address them, but I think the anxiety is a consequence of the social quandaries I face, not a cause . . .

Crystal R. Cook