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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 ūüėä

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.

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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

 

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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.

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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 РI’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 РMatthew Mondays, and on Wednesdays РWilson 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 . . .

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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

We aren’t accepting applications at this time. I wonder why?

My son decided to go out this afternoon and get some job applications. Thankfully, he changed his clothes before he went – he had the foresight to realize the shirt he was wearing wasn’t the most appropriate for the task at hand. I was really proud of him . . .

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Turns out he wasn’t thinking what I was thinking.

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– This is the shirt he changed into –

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Nobody seems to be hiring right now.

She was once told he wouldn’t – Graduation & Gratitude – autism

– She never doubted he would make it –

An autism mom’s heartfelt thank you to the teachers who helped shape her son’s future.

  This past week my Facebook timeline has been filled with photos of proud parents posing with their children, diploma in hand. 2015 graduates in their caps and gowns, surrounded by friends and family celebrating their success . . . myself included, my youngest graduated this year as well. Watching your child walk across the stage to receive their high school diploma is something parents dream about. We look forward to it, anticipating the day they cross that proverbial threshold into what will be the beginning of their future as adults.

For some of us, it’s a milestone we weren’t always certain we’d see. We hoped for it, we dreamed of it, we fought like hell for it. Our children had to overcome obstacles most of their peers weren’t faced with as they navigated their way through the busy hallways of high school. Our children were different, our children . . . have special needs.

Some of us were at one time or another, told our child likely wouldn’t do certain things, keeping pace with and graduating with their peers is often one of those things we are told not to get out hearts set on, so when it happens, the emotions that accompany the occasion are raw and real and overwhelming.

We worked hard and our children worked hard and we didn’t do it alone. Along with doctors and speech therapists and occupational therapists and many more, teachers become an intrinsic part of our lives, we know without their support and willingness to learn and grow alongside our children as they help guide them and teach them, the winding path we travel would be much harder to follow.

The following letter is from one of those grateful parents who was blessed to have those special teachers in her son’s life, teachers that helped her help her son to become a successful student, a son she was able to watch receive his high school diploma despite the odds some said were against him.

Her words are heartfelt and filled with grace and gratitude and it’s my honor to share them . . .

An open letter to the Burrillville School District…

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To the whole of the Burrillville school department,

I’ve struggled for many years thinking about what I would say if this day ever came, struggled because how do you explain to a group of people how their actions – whether they realize it or not¬†– have positively impacted your family’s life in such a way that was never thought to be possible? The alternative path my son’s life could have taken had he not had the support of his teachers, aids, student supports, and even the custodial and kitchen staff, would have been greatly different from the future my son now has. Had My son been placed in a contained classroom he likely wouldn’t be the young man we have now.

If you were one of the few doctors and or therapists who once told me my son would never function; that I was in denial and he was profoundly autistic – I’d know EXACTLY what I’d say to you. That statement is one I’ve had clearly planned out for years for obvious reasons – they were clearly wrong, and my son graduating shows just how wrong.

But you, (several teachers and staff names omitted)¬†and the staff at A.T. Levy, W.L.Callahan, BMS, and BHS? You all had a hand in changing my son’s life, and that leaves me both beyond grateful and speechless.

Despite autism, my son was given a shot other kids before him rarely, if ever, were given. It required going against everything we knew about autistic kids and pushing my son to the limit. It was often even demanded of him that he learn how to function alongside his neurotypical peers. This was no easy task. My son didn’t even allow anyone to touch him until he was two. I’ll never forget that day because it was the first time my child hugged me, and it was a hug his father and I had fought for. He didn’t speak until he was almost 4. No independent or unprompted speech until 6-7-8. He was defiant and belligerent. He was not an easy kid. He was “the bad kid” in those early years. No one wanted their kids to play with him because everyday their children would talk about how my son had gotten in trouble, or did this, or did that. There were no invites to birthday parties or Halloween events. It was a truly lonely time. His behavior was so bad that I basically attended second grade with him. The principal at W.l. Callahan and I? We go way back.

There were days I left that school and just cried in the parking lot, sitting in my car. No matter what I did I didn’t feel like I was really helping my son. There were no guidelines for mainstreaming an autistic child and we were all out of our element. I once cried to XXXX-XXXXXXXX (second grade teacher) about how I was afraid he’d end up in jail or worse – because I was failing him. I was really afraid for that kid. No one, including myself, really “got him” at the time. How would he succeed if we (the adults in his life) didn’t know how to help him?

Everyone likes to give me the credit for my son getting to where he is, but the God’s honest truth is that I could have never done it without the help from his teachers, principals, and other staff over the years. You’ve allowed me to parent not only during a time when it had become politically incorrect to parent – but to do so without fear of saying the wrong thing to my own son. I didn’t have to tip-toe around my own child. If I felt he knew better? No one questioned that. If I felt he had to be held to a certain standard? You all backed me. That alone made a huge difference because it taught my son that the adults in his life were a united front. A “village” if you will. A wall – unmovable.

I didn’t want my son’s disability to be an excuse. You all backed me. I’m sure there were times when you didn’t necessarily agree with my stance, but you still backed me. Those simple actions taught my son that the adults in his life were not budging. It taught him the hard lesson that actions have consequences and that the adults in his life were going to hold him to a higher standard. No one was going to save my son from the consequences of his actions, and it was the fact that his family, and his educational staff both had certain expectations – that taught my son a sense of responsibility. There was no “out” for him. We stood together like the Great Wall – we stood strong and united.

Though there have been teachers who’ve retired after 180 days with my son, those teachers, though utterly exhausted most times, were still good to my boy. I’ve had a few tell me right to my face that he was the toughest kid they had ever had in all of their years of teaching – but each one of them also genuinely enjoyed my son, even if he exhausted them.

These final years – High school. “It’s been a long, strange ride.”

Wow! What a challenge! I sit here at my dining room table looking at something I never thought I’d see. I keep touching the silky blue and white tassel and I can’t help but cry as I think of the little boy with the big brown eyes who was never supposed to graduate with his “normal” peers. And here he is, he’s graduating at a young, 18 years old with his “neurotypical” peers. He’s made it! At least this far. That in itself is really something. 20 yrs ago, my son walking down that stage with his peers would have been unthinkable. He likely wouldn’t have even been allowed to attend a typical school back then. That’s really the reality autism parents once faced. It was the forced nightmare, to know your child had locked potential that no one was willing to try to unlock. You all, from custodians to teachers, aids, kitchen staff, office staff, ect., you collectively changed the life of not only my son, but our whole family.

So as I sit here thinking, wishing beyond anything to find the words to express to you all what you’ve done for my son, all I can think to say is “thank you.”

Thank you to each and every single one of you who saw more than autism when you looked at my son. Thank you.

Thank you for your patience, faith, dedication, and fierce determination. If at the end of today, you feel as though you haven’t made a difference in the world – you’re wrong. You’ve changed my son’s world and I know you’ll continue to change others’ futures as well.

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With my deepest love and appreciation,

An Autism Mom.