Archives

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.

image

 

 

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

image

 

Wilson Wisdom – Autism Awareness

img_0770My son made me smile this week, something he does regularly, but this smile – this one is still in my heart. I’m filled to bursting with this smile because he took a huge step, he summoned his courage and he faced the unknown to do something he’s been talking about doing for a some time now.

My son is my hero, I’ll tell you that about him first. In his 27 years, he has taught me more than I could have ever dreamed while I was busy teaching him. His name is Wilson. I knew almost right away he was something special, it took nine years for that something special to be diagnosed, autism.

Our journey together has been amazing.

As he grew older, he began to develop phenomenal insights about autism. His desire to share those insights with others grew into a passion for spreading autism awareness. One of the ways he did this was to create a Cafepress store called Wilson Wisdom. I was an admin for a large online autism group, and he regularly dictated things for me to share with them, he answered questions the members asked, and truly helped so many peek into the world of autism.

The last few years, he’s been making autism awareness posts on Facebook, this week, he decided to make his first video, and I simply cannot stop smiling. I have a feeling once he gets used to it, he is going to do just what he told me he would do when he was younger, change the world one person at a time.

Sharing this smile today for The Weekly Smile at Trent’s World (the blog) 

Wilson Wisdom for Autism Awareness


I am so proud of my son, it takes a lot of courage to put yourself out there like this and I hope he continues to do so . . . He has amazing insights and so much Wilson Wisdom to share.

Doing autism awareness videos is something he’s thought of for some time now, I had no ide he was going to take such a monumental step like this, I am overwhelmed, and as always, so very proud of him.

Please remember he is speaking from his own experiences and sharing what he has learned, and is in the process of learning, throughout his life. He understands everyone with autism is unique, and while he may sometimes say ‘all’, he is speaking about things that are very often common among autistics.

Your comments and encouragement are appreciated 😊

And this is why tumbler annoys me –

My son was Googling my name for fun, because it’s super fun to Google your ma’s name when it pops up all over the place, and he stumbled across a tumbler thingy calling ME out for a pin I pinned on Pinterest forever ago. I have no clue how old this tumblarity is, but I kind of wanted to address it, plus, I’m a little bored – sooo . . .

**For clarifications sake, the portion of this I am referring to is inside the yellow box there on the right, the rest is my response.

Into the Future – Autism

I pulled up an old piece written for The Stir on CafeMom that ran for Autism Awareness Month in 2010. I just wanted to share it again for those new to this journey. My children and I have traveled this winding path for a long time now, navigating the many twists and turns, still finding unexpected beauty amidst the many detours along the way.

Autism

My children have come so far and grown so much. 

They’ve taught me more than I’d ever hoped to teach them. The struggles they face and the obstacles they must overcome are many and changing as time passes. Two steps forward and one step back doesn’t really apply when it comes to autism.

Some days it is one step forward, stub your toe, trip on something, stand up, turn around, sit down, get back up and start all over again. Sometimes though, we simply take a leap and land on both feet.

So much has changed in the field of Autism research, so much has been learned, yet the stigma and the struggle to adapt in an oftentimes unaccepting world remain. This has truly been our greatest struggle.

In 2010, when this piece was written, my boys were just stepping out into the uncharted territory of adulthood. I’ve often thought of society in general as playground bullies or the bystanders that turn a blind eye to them. Thankfully, there are angels that walk the earth who look at my boys with their hearts and see who they truly are.

Now, at 26 and 23, they are still trying to find their footing, stuck somewhere between ability and disability, childhood and adulthood, just trying to find a place to belong. So much attention is paid to children with Autism, as it should be, but what we need to remember is they grow up. Autism does not go away as childhood passes by, they simply become adults with Autism.

There is a great need for more services for these Autistic adults, services that are easy to access. It is slowly happening, a watch pot never boils, right? We still keep an eye it on though, waiting to see the bubbles rise to the surface. I am watching . . . and waiting.

In the meantime, I continue to teach them, continue to support and nurture and love them. They are content with who they are, they accept themselves and they accept everyone around them. They just want to be accepted by as well.

A few notes regarding the article – We no longer use the terms high, mid or low functioning. These terms can be misleading. When someone hears high functioning, they may expect more out of the person that they can often give, when they hear low functioning, they often do not expect enough. It’s Autism. It is all, just Autism.

I am proud of my boys and the men they have become and look forward to the men they will one day be.

They are my heroes.

*Matthew’s diagnosis is written as PDD NOS, it was later changed to Asperger’s with a co-morbid dx of Bipolar.

*My husband I did not wed when we were teenagers, we’d met 25 years prior to this article, the I do’s came later.

*While I no longer admin for the Autism group, the friendships I forged during my time there have remained and grown.

 

Into the Future . . . Our Autism Story

Interview with Crystal Cook by Amy Boshnack

 

Wilson


Wilson, age 20, with his buddies Arthur and Merlin. 
Crystal married her high school sweetheart almost 25 years ago and they had four children, three boys and one girl, who are now between the ages of 12 and 20. Two of her boys have Autistic Spectrum Disorder.

Crystal spends what free time she has on CafeMom as an administrator for the Autism/Asperger’s/ PDD Awareness Group. (You must be a member of CafeMom to view the discussions in this group.) This allows her to “reach out to many and share the message of autism awareness and acceptance.”

She has learned a lot over the years and shares some of that knowledge, and her own story, with us now.

Matthew

 

How old were your boys when you first suspected they might have autism? What were those initial signs?  

To be honest, I knew from the very beginning. When my oldest was born and I looked into his eyes, I just knew there was something special about him. Not the kind of special all moms see when they look upon the new life they just brought into the world, I felt that of course, but there was something beneath the perfection of him, something in his eyes somehow told me he would be special in a very different way than I had expected.

As he grew, he wasn’t meeting the typical milestones most babies did. Smiling, cooing, rolling over … he was just content to lay there and watch the little bears on his mobile until hunger prompted him to call out for me. I went to his pediatrician with many questions and left without answers. When he was six months old and hadn’t shown any interest in sitting up or playing much, I was told I must be holding him too much. When he wasn’t trying to mimic sounds like the other babies his age, I was told I didn’t talk to him enough. When he didn’t crawl and then didn’t walk, I was told I carried him too much. None of those things were true, but I could get no-one to listen to me.

The general consensus of his doctors and most other people in my life was I was young and lacked the skills needed to teach a baby. I was more than frustrated. When he was sixteen months old I contacted an early intervention program to assess him. He had just mastered standing and walking around objects. He had yet to even try and mimic any words and he wanted nothing to to with anyone but me.

By two and a half he was enrolled in a special education preschool. No one could say what was wrong but all agreed there was something. By kindergarten he was beginning to speak with the help of a speech therapist. It wasn’t until he was nine that we received a diagnosis. A new doctor on his team had just returned from an autism conference and he concluded that he had a form of autism. This was a hard word for so many to swallow, too many still thought of autism as the withdrawn child rocking alone in a corner. There was a whole spectrum to the disorder that most doctors and teachers were just beginning to accept.

When his little brother came along I saw that same look in his eyes. The spectrum is vast though and he was quite different from his brother. He was fussy and constantly on the move. He took his first steps the day he was nine months old. Speech did not come to him until around the age of five. Like his brother he had many sensory and learning deficits which were apparent from very early on.

In those first moments when you found out your children’s diagnosis, how did you react? And how did that reaction change over time?   

I cried. Not tears of sadness though. Tears of thanks and relief. After all the years of searching and trying to find doctors who would listen to me and see what I was seeing, I finally had an actual diagnosis. It’s safe to say I felt almost euphoric for days, perhaps even weeks afterward.

Time has done nothing to change the happiness and release I felt once those words were spoken. I suppose you could say I felt empowered and vindicated.

What is their exact diagnosis? And what does that mean in laymen terms?

My oldest is diagnosed officially with autism. Mid to high functioning. Every child with autism can present a different array of symptoms. He began his life with obvious developmental and cognitive delays. Sensory integration, speech and language issues, social adaptability and self-help skills are just some of the areas autism has effected his life.

His brother carries a diagnosis of PDD-NOS, pervasive developmental disability – not otherwise specified. He shares many of the same issues as his brother, but to a lesser degree.

Not all children on the spectrum have learning disabilities, mine do. They both carry a co-morbid diagnosis of ADD. My oldest has an anxiety disorder and the younger of the two is also treated for bipolar disorder. Both live with the effects of Tourettes Syndrome as well.

What are 3 things you wish someone would have told you about autism that you had to learn on your own?

Wow, this one is tough because twenty years ago no one even mentioned autism. It wasn’t something that was thought of when it came to children with the difficulties mine presented. I find it almost amusing, at times, when I read about the different therapies used now, things I instinctively did on my own.

  • I suppose it would have been nice to just know there were other people out there who understood, that I wasn’t the only one in the world dealing with the issues I faced every day.
  • It would have been nice to know it wasn’t my fault.
  • It would have been the greatest gift to know that there was so much hope for the future — that my boys would one day find their place in the world.

What or who has been your greatest resource for information and support during this time?

Again, a difficult question. Until my son was nine years old, I knew nothing about autism. The Internet wasn’t there for us as a resource when he was younger. My support system was my family. My mother has held me up during times I simply could not stand on my own.

What’s been the most challenging part of dealing with a child with autism?

Honestly, the most challenging thing I have faced in the twenty years since I began this journey has been the lack of knowledge and acceptance of autistic spectrum disorders. One of the biggest challenges our children face is the prejudice and ignorance that prevails in our society. It shouldn’t be so difficult for people to accept the differences of those with autism. Parents shouldn’t be blamed and those with autism should not be made to feel shamed or shunned because they may walk or talk differently than those around them.

Tell us something that makes your children special or unique. 

Innocence. My boys have maintained an innocence you just don’t see in many young people their age. It’s the kind of innocence that sees things as most of us stop seeing them as we grow older. It’s the innocence of play and pure love.

Knowledge. Amazing knowledge about amazing things. They tell me things that I never knew and I am in awe.

Finally…. The debate around the cause(s) of autism is very heated right now. What do you think causes autism? 

Genetics. Perhaps there are environmental triggers for those who have the makeup for it. My children did not regress or ‘go away’ they simply didn’t develop the way other children did. When they were babies they were nowhere near as many vaccines given. It terrifies me to know there are parents who choose not to vaccinate. The reason we live in a time without the diseases that once took so many lives is because we have taken the steps to vaccinate against them.

image

 

Do you want to hear about autism from someone who REALLY gets it?

imageI’m thinking about starting an interactive series, two actually, here on The Qwiet Muse – I’d love to hear some feedback about the idea.

If you know me, or have read my About Me page, you know I have two amazing children with Autism, one is Bipolar as well. They are both intelligent, articulate, and more self-aware than most people I’ve come in contact with. They astound and amaze me with their insights and their desire to better help the world around them understand the developmental and mental issues they, and so many others, face on a day-to-day basis.

I truly believe in order to even begin to understand autism or bipolar, you have to learn from the very people who understand it best – the ones who live with it.

What I would like to do is invite people to ask any questions they might have, here, or through The Qwiet Muse on Facebook or Twitter, and have them answer each question personally on videos that will post on Mondays – Matthew Mondays, and on Wednesdays – Wilson Wednesdays.

Matthew can address his experiences, advice, and answer questions regarding Autism and Bipolar, and Wilson will do the same about Autism. Both boys have lived and dealt with anxiety, OCD, depression, sensory issues, Tourette’s, medications, school, social issues, and more.

You don’t have to have a loved one with Autism or any of the other issues we might cover, it’s important for everyone to develop a deeper understanding and awareness, caregivers, teachers, neighbors, and anyone who wishes to eradicate the ignorance, misinformation and misunderstandings that are so abundant when it comes to these things.

I’ve been on this journey for almost 26 years now, maybe I’ll even join in . . .

Please leave me a reply and let me know what you think or go ahead and leave a question or two to get us started.
Thank you!

They said . . .

Image
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