Archives

When speaking to parents of autistic children –

image

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

Is it really the least restrictive environment? Special education vs Mainstream

*The following is based on personal experience and observation both with my own children and those I have advocated for in the past. I realize there are indeed success stories involving a smooth and beneficial transition from a special education setting to a general education one. Unfortunately, there are many more examples of the system failing.

The methodology behind mainstreaming special needs students into the general education classroom is too often poorly thought out and implemented. It takes too broad of an approach to the special educational needs of many students, and in doing so, only serves to hinder, not help.

Special education was created for a reason. For a population of students with different needs than many of their peers, different abilities which sometimes require a separate and unique forum in which they can learn, an environment better suited to meet their needs. The school system has been caught up in a whirlwind of state standards and testing, coupled with the need to be politically correct, it spells disaster for many of our children.

Over the years I have seen many school districts systematically take away the services our children need and are entitled to. Parents have to fight and go through due process hearings and mediation to get their children the educational services they are by law entitled to receive. The need for socialization has replaced the need for academic achievement. There are many ways to find a social balance between the mainstream and special education programs.

The term least restrictive environment is thrown around quite liberally to loosely justify taking aspects of special education away. The least restrictive environment is supposed to be just that, an environment in which a students social, emotional and educational needs are met without depriving them or restricting them from growth and development at their own pace.

In reality, what many educators are deeming to be the least restrictive environment for a learning disabled or mentally challenged student is, in fact, often the most restrictive and detrimental environment they could be placed in. The very best general education teacher will not be able to meet the needs of a student or students who require a different approach, one they most likely haven’t received the training required to teach. This only leads to frustration for the teacher as well as her students.

Many classrooms themselves are simply too overwhelming for the special needs student. The room may be too colorful, too noisy or have too much movement. The fluorescent lighting itself can cause havoc for a student with sensory integration disorder. 1 in 68 children have been diagnosed with an autistic spectrum disorder. Just those few things I’ve mentioned can be too much for them to handle.

If a students learning challenges are mild enough to be placed in the general education setting and they are thriving, then they are in the right place. If they are not thriving however, if they are overwhelmed and cannot keep up, or they are ostracized because of their differences, then they should not be forced to endure it for the sake of satisfying those who have jumped up on a soapbox of denial. We cannot make them fit in or adjust. The misguided notion which says we are preparing them for the real world by trying to assimilate them into a society that may or may not accept them, only proves to make the transition even more difficult for them.

Many mainstreamed children with special needs leave school feeling ashamed of who they are, feeling they were not good enough. How is that going to help them in this real world everyone keeps talking about? More and more students with special needs are failing to reach graduation, they are held back or worse, many drop out of school entirely. They are not being given the opportunity to learn many of the things they could be, and should be learning in a proper educational setting.

I find it odd that gifted children are given their very own society. There are advanced placement classes specifically for those with academic prowess which surpasses their peers. Why are they there? Because they learn things differently than the other students. Because the regular education setting did not provide them with enough of what they needed to maintain and challenge them. Why do we justify the segregation of these children while forcing others to remain in settings not suited for what is best for them?

Special education should be special education, separate and different from the mainstream, but there should be a bridge for those who are able and ready to cross over it.

As a mother of four children with varying degrees of special needs I have been involved in this debate for years. Since my oldest was two and half years old to be precise. He is now nearing 25 years old. I was trapped on the special education roller coaster for many years, and I must say, I did not enjoy the ride.

I think it best if the last word comes from someone other than myself, I would like to share with you the opinion of a brilliant, young autistic boy . . .

“It is not easy to be placed in a classroom full of kids that are not nice to you, who are sometimes actually mean. They don’t do it when the teachers can see or hear them and for some reason they are believed when they deny the deed. It is not easy to learn from a teacher who does not know how I learn and does not have the time to learn how to teach me. It is not easy to be in a classroom that is filled with colors and movement and noise and bright lights and constant changes.

A classroom best suited for me and many other students is one that is calming. One that does not display too many decorations and the lights don’t hurt my eyes or my ears. The fluorescent lighting in most classrooms make sounds that not everyone can hear. I need a classroom that has stability and structure and I need a teacher that knows the unique way I learn and has the time and training to teach me. I need a teacher that will tell me if there is going to be a change like a substitute or if the furniture will be arranged differently. These things are more important than being put in a classroom that I shouldn’t be in because someone who does not know what it is like to live with these things says I should be.

I resent the idea that these experts are trying to integrate us in with normal kids. Neurotypical does not mean normal. There is no such thing as normal. I do not truly care about what an expert thinks is best for me, I care about what really is best for me and for others just like me. I was in a regular education class and it was like daily torture. Thankfully my mother saw very quickly that something needed to be changed and starting fighting for those changes. I was able to go to a school with teachers who knew how to teach me, that were trained in the different abilities of their students.

There is room for socialization outside of school if we want it. That is something experts do not seem to understand. We DON’T always want it. You look at us walking alone on the playground talking to ourselves or stimming, you see us eating alone at lunch and think that we must be sad and lonely. Don’t you see that it is a choice for many of us? The schools need to stop taking away the freedom of kids like me. I will graduate from high school this year and I plan on continuing to change the way the special education system is structured because it is flawed. Thank you for your time.”

Wilson Cook

My son was 17 years old when he wrote this. He was completely removed from mainstream education in the 9th grade, he attended a special needs charter school through graduation. I attribute much of the success we have had to those special education teachers who took the time to really help him. My son was non-verbal as a child. I was told he would never learn and now he is the one teaching the lessons.

Crystal R. Cook

He is changing the world every day.

imageOn page 26 in the book Chicken Soup for the Preteen Soul (Published in 2000), you will find a little piece of my son’s heart. It is his perfect ending to the statement “If I could change the world for the better I would . . . “

He found the call for submissions on a website and sent his thoughts in. His quote was chosen for inclusion and he received an autographed copy of the book and a check for twenty dollars, he was on top of the world, published and rich at 9 years old.

So, on page 26, right below Justin Timberlake and a little girl named Scarlett, you will find these words describing how my son would change the world for the better . . .

“Help people realize that people like me who learn differently and do things differently than them are still really the same underneath it all. We want to be liked and smiled at.

Wilson Cook, nine

This was the same year he received his official diagnosis of Autism. I hope his wish for a better world comes true.

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

image

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

Credit where it’s due.

* Update – The page owner responded kindly, offering to remove or give him credit. I want his words, his message out there . . . I just don’t want someone claiming them as their own. Her response left me feeling a bit better about people, I suppose part of me was expecting the resistance or rudeness I have encountered trying to remove his work from other sites, one even selling his design as their own. She was very much the opposite and I am thankful for it . . . 

My sweet friend, Kathie, sent me a link this afternoon referencing an image someone claimed to have created, a very familiar image to most anyone who knows us. It was among the first creations of what was to become Wilson Wisdom.

I realized this kid of mine had much to share with the world, a message of acceptance and understanding for the autistic community, so I started transcribing his words, sharing them wherever I could. We eventually began putting some of his insights and wisdoms on CafePress in hopes of spreading his message.

It worked. Labels Are For Soup Cans, Autism Is A Diagnosis, can be found in many places around the web, unfortunately, unless you type it into a search engine you wouldn’t know who said it. You can enter Wilson Wisdom or the Qwiet Muse with the word autism and you’ll find it though.

Hindsight is 20/20, cliché, but factual. We didn’t put his name, or Wilson Wisdom on some of those first little tidbits we shared with the world. Now, sadly, I have seen several used on websites, even some used for profit, without giving my son the credit he so very much deserves.

People who claim ownership for something clearly not their own should be ashamed . . . It’s sad, but an unfortunate reality.

At least we know his words are out there, hopefully touching and changing hearts and lives.

I shared the following in a previous blog post, I feel compelled to share his analogy once again.

Wilson Wisdom

I have yet to find a downside to what so many refer to as a label. It is, in fact, a diagnosis, something many tend to overlook. My oldest son will soon be twenty-five years old, he is most likely the wisest person I will ever be blessed to have known in this life. He lives his life on the autistic spectrum; he has a thing or two to say about labels . . .

“Labels are for soup cans, diagnoses are for people, but they both serve the same purpose. They tell you what is inside and how to properly prepare it. If you have five cans on a shelf and one does not have a label, you are going to use the four cans that are labeled first because you know what they are. You know if they will need certain ingredients or special preparation. Sometimes the can missing its label never gets used. You put new cans in front of it and it remains there. When you do finally look inside to see what it is, you’ll see that it was something you really wanted, but it’s too late to use it. It will never be what it was supposed to be.

Now instead of a soup can, imagine a child who is different from the others, but no one knows why. The child gets overlooked and ignored because no one knows what to do with him, how to teach him, how to prepare him for the future because the diagnosis, or label that should tell everyone how to do these things was never given to that child. So they remain in the background becoming more and more lost. When they get older and someone comes along and decides to find out what is going on inside that child, it’s too late. The education and the therapy they needed were never given to them and they will never be what they were supposed to be.”

Wilson Cook

When my son wrote this I was in awe at his insight, he was eighteen at the time. I know if I’d been afraid of that proverbial label, he would not have become the amazing young man he is. I was told he would never talk, never learn. I listen to him speak and I read the words he writes and I know I did the right thing for him. The one little word, autistic, on a simple piece of paper changed the course of his life for the better.

Two of my children require very specific labels if they are to get the services they need and deserve, both have been blessed with the gift of a proper diagnosis. One of my children faces many, many challenges. Before I had names for those challenges he was considered a problem child. He was thought to be rude, lazy and was accused of ignoring his teachers. They told me he didn’t want to learn. The truth was, he did want to learn, they just didn’t know how to teach him.

Children do not receive the occupational therapy, speech therapy and specialized education they may need simply because we ask for it. Even if all involved agree, services are still withheld for lack of a professional diagnosis. Call it a label; call it a diagnosis, in the end all that matters is your child. You want the best for them; you want their futures to be bright and filled with possibilities.

Many children never reach their full potential because society was too afraid to label them.

Wilson Wisdom can be found at http://www.cafepress.com/wilsonwisdom

Labels go on soup cans, autism is a diagnosis.

image

I have yet to find a downside to what so many refer to as a label. It is, in fact, a diagnosis, something many tend to overlook. My oldest son will soon be twenty-five years old, he is most likely the wisest person I will ever be blessed to have known in this life. He lives his life on the autistic spectrum; he has a thing or two to say about labels . . .

“Labels are for soup cans, diagnoses are for people, but they both serve the same purpose. They tell you what is inside and how to properly prepare it. If you have five cans on a shelf and one does not have a label, you are going to use the four cans that are labeled first because you know what they are. You know if they will need certain ingredients or special preparation. Sometimes the can missing its label never gets used. You put new cans in front of it and it remains there. When you do finally look inside to see what it is, you’ll see that it was something you really wanted, but it’s too late to use it. It will never be what it was supposed to be.

Now instead of a soup can, imagine a child who is different from the others, but no one knows why. The child gets overlooked and ignored because no one knows what to do with him, how to teach him, how to prepare him for the future because the diagnosis, or label that should tell everyone how to do these things was never given to that child. So they remain in the background becoming more and more lost. When they get older and someone comes along and decides to find out what is going on inside that child, it’s too late. The education and the therapy they needed were never given to them and they will never be what they were supposed to be.”

Wilson Cook

When my son wrote this I was in awe at his insight, he was eighteen at the time. I know if I’d been afraid of that proverbial label, he would not have become the amazing young man he is. I was told he would never talk, never learn. I listen to him speak and I read the words he writes and I know I did the right thing for him. The one little word, autistic, on a simple piece of paper changed the course of his life for the better.

Two of my children require very specific labels if they are to get the services they need and deserve, both have been blessed with the gift of a proper diagnosis. One of my children faces many, many challenges. Before I had names for those challenges he was considered a problem child. He was thought to be rude, lazy and was accused of ignoring his teachers. They told me he didn’t want to learn. The truth was, he did want to learn, they just didn’t know how to teach him.

Children do not receive the occupational therapy, speech therapy and specialized education they may need simply because we ask for it. Even if all involved agree, services are still withheld for lack of a professional diagnosis. Call it a label; call it a diagnosis, in the end all that matters is your child. You want the best for them; you want their futures to be bright and filled with possibilities.

Many children never reach their full potential because society was too afraid to label them.

Wilson Wisdom can be found at http://www.cafepress.com/wilsonwisdom