Tag Archive | aspergers

Listening With Your Heart – Autism Sings

Listening with your heart - Crystal R. Cook

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

My heart . . . it dances.

Crystal R. Cook

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

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

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When Autistics speak, we need to listen . . .

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

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

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

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

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

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

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

Wilson Cook

He was dying . . .

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

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

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

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

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

Crystal R. Cook

The day he was diagnosed – Autism

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I sat for what seemed like hours staring at the small stack of papers the doctor had given me. My tears had already stained many of the pages. I stared at the word Autistic, it stood out among the rest. I ran my finger along the printed word. Autism, Sensory Integration Dysfunction . . . the tears rained down.

We’d waited so long for a diagnosis, so long for someone to listen and understand. The tears I shed were not in sadness or despair, I was happy, near euphoric quite honestly, I was excited about what this long-awaited diagnosis meant for my son.

He will be 26 this year, I knew the moment our eyes first met there was something special about him. I realize all mothers could make that claim, but somehow I knew something was different. As time passed, it became more and more apparent there was more to my feeling than just a feeling. He was not meeting the milestones he should have been meeting. He was so different from other babies his age.

Twenty-plus years ago the Autistic Spectrum didn’t seem to exist. The word Autism kept coming to me, but the doctors dismissed the notion. When he was two, he was enrolled in a special needs preschool through early intervention. He was diagnosed as learning disabled with Sensory Integration Dysfunction. Later they added Pervasive Developmental Disorder – Not Otherwise Specified. He began speech and occupational therapy and I saw change and growth, but there was still something there, right beneath the surface.

He began speaking shortly before he was five years old, before that it was mostly echolalia sprinkled with random words and phrases he was learning. When he began grade school his services stopped. They said he did not have a qualifying condition to merit the services such as continued speech and occupational therapy he so badly needed. PDD-NOS was not specific enough.

He was listed as learning disabled and placed in a mainstream classroom with modified work. I watched my son slip away and I began to fight. All the while, teaching him and working with him as I always had, but I fought the school, I fought the district and finally, in the fourth grade he was placed in a special education class and he began to learn.

It wasn’t enough though. They didn’t understand him. They forced him to make eye contact he was unable to make. They forced him to suffer through an ever-changing and unpredictable schedule and punished him when he would retreat into his own little world. I once again brought up Autism. He can talk they said, he doesn’t have Autism. He is smart they said, he can’t possibly be Autistic.

My younger son was having many of the same difficulties and was beginning speech therapy. The school psychologist suggested I had Munchausen’s by proxy and urged me to seek help. I was furious. I made an appointment with yet another doctor and within a week my prayers were answered. By God’s grace we walked into the office of a young doctor who had recently attended a seminar about Autism.

He knew there was a spectrum, he new about Aspergers, he knew how to diagnose my son and he knew what we needed. In my heart I knew he was autistic, now someone else finally understood. I broke down in his office. I tried to hold it back but the flood of emotions I’d so long waited to release could not be contained. I praised the Lord right there in that office and have been praising him in thanks every day since.

With this new and proper diagnosis my son was placed in the perfect classroom setting, he was given back the therapies he needed and deserved. He began to grow and learn once again. There would be more battles with the district through the years, but I was relentless in my quest to see he had everything he needed to thrive.

I eventually fought to remove the Aspergers diagnosis in favor of Autism, technically, he fit the diagnostic criteria regarding speech development for Autism, it proved to be a magical word and the educational and therapeutic doors which had remained closed until that point, suddenly opened.

He is a wise and wonderful young man, intelligent and witty. He most definitely walks to the beat of his own drummer and he is perfect, just as I always knew he was.

The day my son was diagnosed with autism was one of the happiest days of my life. Two of my four children have autistic spectrum disorders, I have been blessed beyond measure, it is an honor to be their mother . . .

Crystal R. Cook