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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.

When speaking to parents of autistic children –

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I have two children, now adults, on the autistic spectrum. They are amazing and wonderful, smart and sweet, but they are different and that’s okay with me, it’s okay with them. Most of the time, the outside world doesn’t get to us, but now and then, it does.

I’ve encountered many different types of people on our journey through life with autism, some are supportive and accepting, some are cruel, intentional or not, and then there are those seemingly well-meaning people who unintentionally fall somewhere in between.

Those are the ones who can sometimes hurt us the most. They can be loving friends, family or complete strangers, it doesn’t matter who they are, what does matter is what they say.

Please do not tell me you understand. You do not. There is no way you could.

Please do not tell me your typical child does the same things, trust me, there is no comparison.

Please do not tell me it is just a boy thing.

Please do not tell me it is a phase or they will grow out of it. It is not and they will not.

Please do not tell me I need to discipline more. Discipline does not cure autism.

Please do not look at me or my children with pity. We do not need it nor do we want it.

Please do not ask me if I wish they were different. I don’t.

Please do not give me advice unless you walk the same walk we do.

Please do not tell me what worked for your child unless your child happens to be autistic.

Please do not tell me they do not look autistic. That is ridiculous.

Please do not tell me they do not act autistic. No two autistics truly act the same.

Please do not say things like, “If that was my kid, I would . . .”.

Please do not accuse me of letting them get away with things. I certainly do not.

Please do not ask me what I did or did not do during my pregnancy. That has nothing to do with it.

There are more, but I think you get the point. I hope so. I spend every minute of my life trying to teach my imagechildren coping skills, daily living, and social skills. The fact that they do not always ‘act’ autistic is because of the amazing strength and determination they have, and to be honest, because of mine as well. So sometimes you will see them like they are any other young person their age, and other times you will see them in all their autistic glory.

I discipline my children, maybe not the same way you do, but I do. Everything is a teaching moment, there is a difference between discipline and punishment. You do not punish a toddler when he falls as he is learning to take his first steps, you help by teaching them how to pick themselves up and try again.

When someone asks if I would change them if I could, it infuriates me. Would you change your child? The fact is, personally, I wouldn’t and the fact is, I can’t, so why ask such a silly question? God, in his infinite wisdom, gave me these amazing children as they are, I accept and love and cherish them without question. The first time this was asked of me it broke my heart. From the moment I laid eyes on them, the moment I realized they were different and every moment since, the thought has never crossed my mind that I would want them any other way.

What you say and how you say leaves a mark, an impact on the very heart and soul of me, of every parent with special needs children. I know it is impossible to put yourself in our shoes, to imagine what life is like, but if you could just stop and think about how you would feel if someone gave you a backhanded compliment, belittled you and judged you for something they do not truly understand, you might choose your words with a bit more care.

Crystal R. Cook

Autism

He was nine when he wrote it – This is how autism sometimes speaks.

 

Compassion comes in many forms, I think on this day, my son’s capacity for compassion and empathy and understanding of a world we so often take for granted shone bright in its innocence and purity . . .

imageThere are those who say autistic people do not have the capability to feel empathy or compassion or relate to the emotional world around them. I know this to be untrue, they may express these feelings differently than others, but they are more than capable of feeling them.

When my children were young we spent many afternoons in the park. Sometimes, when I drive past it, I can almost see them playing there, I hear their innocent laughter between the beats of my heart. One of these outings stands out in my memory, it was a beautiful and brisk autumn day, the perfect kind of day for something special.

Two of my four children are autistic, one is quite social and loves to run and play, the other is very much the opposite. He prefers to be still, watching, listening, taking in everything around him. While his brothers and sister quickly ran out into the open field to play, he spent the afternoon with his arms wrapped around a tree, he wrote this poem when he got home, he was nine years old.

VOICES OF NATURE

The wind chills me
as I walk the path
through the park

I hear a small voice
that is heard with my heart
It says “come to me”

I search for the source
of the mystical voice
there is only a single tree
ancient and weathered
roots exposed to the sun and the rain

The voice draws me nearer
and I see tiny little ants
crawling about
in search of food

I knew it was not them
that called out to me

I look to the top of the tree
the bare branches sadden me
I touch the tree
and feel enormous pain

Somehow the tree had spoken to me
maybe it is my gift

I sit next to the giant trunk
and speak to it for a while
it forgets its pain

I wrap my arms around it
as far as I can reach
I press my forehead
against the bumpy surface
and I think it’s thoughts
and I feel all that it feels
and it is thankful

Wilson Cook

1000 Voices Speak for Compassion

My Badge of Honor – Still Wearing It With Pride

Badge of honor . . .

 

I am at that stage in parenting when most, or at least many, mothers are trying to decide what to do with all the space in their emptying nests. Maybe they’re gathering stacks of books they’ve put off reading, turning a now empty bedroom into a home gym, or my personal dream, a library. Maybe they’re thinking about taking up knitting or skydiving or writing the novel they’ve always wanted to write . . . I don’t know, my nest is still quite full and my little birdies are currently inhabiting any spaces that could one day become my library.

Three of my offspring are now what the world technically refer to as adults, and the youngest is mere months away from the legality of this reality, but as of yet, only one of them have spread their wings and flown away. I’m not ashamed to say I am content and okay with my nest being slightly more crowded than perhaps it should be at this point, but still, I very much want to see the beauty of them soaring one day.

It’s sometimes hard to believe I have children old enough to be considered all grown up. I remember when I thought if I heard *Mommy* being shouted throughout the house, the store, or the playground one more time I was going to change my name. I remember so clearly . . . mostly because it was yesterday. Literally. With the exception of the playground, it was in actuality, yesterday. You should see the looks I sometimes command at the supermarket.

Yep, my grown up kiddos still call me Mommy. They are bigger than me, bigger than their father, and they call us Mommy and Daddy. They likely always will and to be honest, I love that. I love it so much. I wear that name like a badge of honor.

Sure, we get odd glances and some behind the back comments every now and then, but it never bothers me, it never has. Maybe if people knew why these giant creatures we created call us mommy and daddy they wouldn’t snicker so much, maybe they would think it’s as precious as I do.

The oldest two of my former house trolls are bright, brilliant, and beautiful young men who came into this world with a few challenges. Those challenges have gone by many names over the years: developmental delays, speech delay, sensory integration dysfunction, ADD, learning disabled, PDD, OCD, ODD — the list is long. They were both eventually and properly diagnosed with autism and many of the extras which often accompany it. The younger of the two has an additional diagnosis of bipolar just for fun. It’s not really that fun.

Those boys are my heroes, without a doubt, truer than true heroes in my book. I used to think I would one day have children and I would teach them all about life and love, but it turned out they were the ones who taught me about those things. My children, all of them, have taught me more than I ever imagined possible.

I was abundantly blessed to have these amazing children who have grown into these amazing people, who strangely to some, still call me Mommy. You see, speech came late for those first two boys of mine, and when it came, they called me Mommy and they have called me Mommy every day since. To them, it is my name, it is who they first came to understand I was and they saw and still see no reason to change that. Their younger sister and brother followed their lead and I am blessed with the honor of being called Mommy.

While I do long for that someday library, I am happily okay with waiting for their wings to grow strong enough to carry them.

Crystal R. Cook

Product Promises, Broken iPad & a Blessing

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My dear friend Cindie recently had what could have been a terrible, awful, and heartbreaking incident happen with her sons iPad mini, BUT, Walmart did something wonderful, something another company could have easily, and perhaps should have done themselves.

Cindie’s son is an adorable 9-year-old boy who dropped his iPad, breaking it. Now I know some of you might be thinking, why does a 9-year-old have his own iPad? Or something along those lines; the difference between Cindie’s son and an arguably overindulged 9-year-old with an expensive piece of technology is this, he is autistic.

This particular little boy uses his iPad to communicate, it is his voice. Like any responsible parent, Cindie did her best to protect her sons ability to communicate with the world. She purchased a protective case she was led to believe was pretty much indestructible.

Problem is, the case itself does fulfill the indestructible portion of its claims, but not so much the protective part. It fell short in its ability to protect what it was meant to protect, leaving Cindie and her son with an intact case on a broken iPad.

I realize we can’t blame a product for its hype or effectiveness, well, we can, but reality is, things happen and sometimes we just have to suck it up. I understand Cindie’s frustration with the product in question, I also understand that companies do not have to go out of their way to help us out when something goes wrong, but they can. Some do. Especially in circumstances like the one I’m sharing.

Thankfully, a company did step up, it wasn’t the one she’d expected.

The following is the message which prompted me add my own two cents worth of words . . .

PLEASE SHARE! From a note I wrote . . . I never write things, but I feel very strongly about this. 

iPad smashed — The Good, the Bad, and the Ugly 

The Bad — My 9 year old son dropped and shattered his iPad mini at school. It had a Griffin Survivor case on it. My husband called Griifin and talked to customer service, and to their supervisor and to their supervisor (you get the picture). Well there is nothing they can do for us “But if the case is broken we will replace it.” 

WHAT!!!! The case is not broken. The iPad it was supposed to protect is. http://store.griffintechnology.com/survivor-case-for-ipad-m… 

The Good — Our local Walmart in Coventry, RI, upon hearing that R needed a new voice, has donated one to him! Yay Walmart! http://www.walmart.com/store/2283/

The Ugly —I’m feeling really ugly, mad, and hateful towards Griffin Technologies. Military tested! And it broke! Now I totally support our military, but, yeah, ummm Griffin you dropped the ball. How’s about Autism Tested?

That last bit there is a pretty good idea, I propose ALL products be autism tested as the new standard of durability!

Kudos to Walmart for extending such compassion.

I’d love to hear your suggestions, experiences, and advice in regard to what you feel is the best protective cases on the market, I’m sure Cindie would as well . . .

Crystal R. Cook