Tag Archive | autistic spectrum

They said . . .

Jul9

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

When speaking to parents of autistic children –

Mar1

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 children 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

Listening With Your Heart – Autism Sings

Sep3

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

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

Jul29

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

Social Anxiety or Self Defense Mechanism?

Jul18

My Anxiety Is Not Disordered by Cynthia Kim

The article above provides some thought provoking insights regarding social anxiety and those on the Autistic Spectrum . . .

I found I could relate well to her assessment of certain individuals with social difficulties. If you know me, you obviously know I have social peculiarities. I don’t often care to be around people, I prefer talking via typing rather than gabbing on the phone. I don’t mind going for coffee with a friend, but I don’t particularly care to go to their barbecues, the nights out on the town, the movies, or the mall with them. I don’t know if I necessarily have social anxiety or if I am simply teetering on the edge of some misanthropic cliff, deciding whether or not to jump.

I find spending time with others to be draining, emotionally taxing, and generally uncomfortable. Even with people I love dearly, I need breaks. Decompression. I often feel I should say to them, “It’s not you, it’s me.”

The difficulty comes in explaining why. I just do. I am not afraid of people, well, most of them. I simply do not care for the vast majority of them. I don’t understand them. I love to watch them, study them, dissect them in my mind. I liken my people watching to the desire to take apart a clock to see how it ticks.

Social pretenses are somewhat lost on me, expected norms of interaction don’t come naturally whether it is within a group dynamic or one-on-one, I often feel a certain discomfort. I like being alone, I relish my solitude, but I also enjoy the company of loved ones, I just can’t seem to enjoy it for extended periods of time.

I am not anti-social, selectively and cautiously social is a better descriptor. There was a time I suffered through it all, when my fight or flight triggers were tripped I ignored both options and forced myself to muddle through, seeking and finding release and relief was not something I allowed myself.

Now though, I say no when I know it will all be too much. I steal away and take a few minutes to regain my center when I find myself in a situation involving others, only returning when I know I am able. I feel a certain level of comfort simply knowing I can do so, sometimes just knowing I can is enough to keep my composure.

As this blog article says, it is a self-defense mechanism for some of us. It’s a way of maintaining balance to a fragile portion of who I am. I know what anxiety is, I have social obstacles certainly, they can lead to anxiety if I do not address them, but I think the anxiety is a consequence of the social quandaries I face, not a cause . . .

Crystal R. Cook

Can you tell me?

Jun29

My two oldest boys, both autistic wonders, did not develop conversational speech until they were each around 5 years old. I know all kids go through the thousand questions a day stage, but with them, especially my oldest, it was more than curiosity, it was a need to fill every ounce of themselves with knowledge, facts, and understanding of everything around them . . . they have never stopped asking, searching, and learning. I doubt they ever will.

Why is blue
the color of sky?
Do you know the answer?
Do you know why?

Why is grass green
instead of yellow or pink?
Do you have any idea?
What do you think?

Why is night dark,
instead of the day?
You really must tell me,
now what do you say?

There are so many things
I just need to know.
What makes the birds sing?
What makes the trees grow?

Who made the mountains?
Who put cold in the snow?
I wish someone would tell me,
I’d sure like to know.

Do you know the answers?
Will I ever find out?
Can anyone tell me,
what life is about?

What are clouds made of
and why do birds fly?
I’m just so curious,
I wonder why?

These questions were asked
by my inquisitive son,
from the moment he woke
till his day was done.

If I said just a minute
he would ask me why,
If I said I don’t know
he’d say can’t you try?

If I said nobody knows
he’d say can’t you guess?
I tried so very hard,
I tried my very best.

He followed me here
and he followed me there,
now don’t get me wrong,
I wanted to share,

but I needed a break
for my mind was weary,
I just couldn’t take
even one more query.

I looked at my son
and I beckoned him near,
I knelt down and whispered
so soft in his ear,

My sweet little man,
Mommy’s not mad,
but be a good boy
and go ask your DAD!

Crystal R. Cook 1995

Acceptance is the key

Jun18

http://www.cafepress.com/wilsonwisdom

Labels go on soup cans, autism is a diagnosis.

Jun17

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

The day he was diagnosed – Autism

Jun15

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