Tag Archive | autistic spectrum

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

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

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

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

Social Anxiety or Self Defense Mechanism?

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.

imageI 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?

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.

So many questions

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