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BEING ZORA

BY ZORA OGINAR
I am Zora, the coolest speller in Wisconsin. I am an awesome poet and writer, but mainly in my own head.  All the poems and rhymes that I write are stuck. Having only had a method of communication for a few years of my life means that I have a lot of things that I have been waiting to say. I started to write my thoughts when I was eight and I am only eleven now.
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10/20/2025 0 Comments

Are We Really There Yet?

Happiness to me really would be easier to achieve if I weren’t so lonely.  Kind of obvious having friends makes you happier, but my mom has told me to advocate for myself so I am spelling it out.  Having to make friends takes having the chance to spell with them so real interaction may result.  Lots of well-intentioned people really try to help me make friends but I can’t play with the normal kids that volunteer.  Making kids try to play with me so embarrasses me.  It wouldn’t be so bad if we were playing Uno or something that was meant for girls my age but usually they start stimming because I’m stimming.  Really hate that.  I would prefer talking with them… or playing Uno.
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0 Comments

6/9/2025 0 Comments

The Need For Stims

Have you ever made a mistake?  Having apraxia gets harder when we are making a lot of mistakes. It is like a downward spiral that has no end. 


Having apraxia means that we make a lot of mistakes.  All intentional movement is hard for us to complete so we make plenty of mistakes.  Hitting the wrong letter on the letterboard  makes the worst mistake ‘cause many cps will think you wanted it.  But many mistakes are really minor.  Like sorting things wrong in school or taking someone else’s water; stuff that has really no consequences.

I realize that making mistakes is normal. That is part of life. There is a big difference, however, between those with apraxia who have no communication and speakers. People with apraxia make mistakes and cannot explain that. They have no way to correct it; they have no way to ask for help. So they stim and stim and stim. 

Really thought about this a lot and I think stims (perseverative behaviors) were originally coping mechanisms. I needed to stim to work out my frustration. I needed an outlet. But having stims all the time will become an addiction. That is what I think. Every time I stimmed to escape my frustration I got more addicted to it. 

That has had lots of negative repercussions.  Stimming constantly keeps me too agitated – like a simmering pot – so when really tough things occur I quickly boil and explode.

Want to really quit.  That would be great.  Truly that would save me lots of embarrassment.  I feel stupid when people look – really stare – at me because I am stimming and especially when I boil and explode.  Trading in my stims would be fine, but every time I feel the need to stim I really sort of want to reach for one.  Like people who smoke, I think.

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0 Comments

5/12/2025 1 Comment

Happiness:  A Poem

It wraps you up in a blanket of laughter.
And warms you with the fire of love.
It tickles you with a feather of kindness.
And hugs you with the arms of friendship.
It feeds you with wishes that come true.
And bathes you with smiles.
It showers you with beauty.
And caresses you with joy

It's happiness.
___________________________
Author's Note:  


I am the most happy kid in the world though most people would think that totally impossible. Truly I am really happy.  Try ripping the gag of silence off and see how happy you become.  Try always being treated like a baby then emerging as a tween with sophisticated interests.  Try having the world think you're a stupid idiot and then reveal you're intelligent.  Maybe you'd be happy too.


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1 Comment

1/27/2025 2 Comments

Have a Bite

Having apraxia has an effect on the things I am willing to eat.  A lot of the foods that I eat have probably been things that I have been eating since before I was apraxic.  I cannot remember that far back.  Chili, pasta, French fries, and cake are my favorite foods.  But I like anything that I have eaten my whole life.

Not having a limited diet means that I am generally healthy.  But having apraxia makes trying new foods difficult!  Maybe that has more to do with motor challenges than with actual taste.

Every time that I try something new --- not even something I have never eaten before but something that I never have had prepared in that particular way before --- I cannot manage to eat it on my own.  I have to let my Mom put it on a fork for me.  All I do is wait and hope that she will notice I am not eating, and not assume I am not hungry.  I am hungry.  I just do not have the ability to use my fork to pick up this weird dish.  It is like there is an invisible force field that prevents me from touching the food.  Have no problem after my Mom puts the food on a fork.  

When I moved to Wisconsin, having to try new foods was necessary, and I got over a lot of my hatred of trying new things.  Hatred is maybe not the right word. Maybe more like inability.  Inability to try new things.

Always eating the same thing that I always have eaten gets boring. Visions of plates of food that I have never eaten flow through my imagination.  
2 Comments

12/2/2024 5 Comments

The Worst Thing About Apraxia

The hardest thing that apraxic kids have to deal with is impulsiveness. All of my actions are impulsive.  Having no real control of my motor means that I am unable to really stop myself from always doing the weirdest things.  Like when I am at church, I try to touch the cheeks of the other girls a lot.  I have no idea why I do this.  I do not want to do it. I know it makes them feel uncomfortable but have no ability to stop myself.  I love people, but I do not want to keep touching them!  And I feel so stupid right after.  Really wish I could apologize but they are usually girls I do not know well.  Hard to apologize when you literally have to spell it out! 

Many things that I want to do are messed up by my impulsiveness.  For example, when playing games with my sisters my hands will act like they have minds of their own and grab at the cards or pieces that I do not want to play. 

What you need to understand is it is hard to control.  Not having control has the worst impact on how people see me.  It makes people think that I am less intelligent than I really am.  Hate them thinking that I am stupid.  Before I could spell, everyone thought the impulsive things I do are intentional and that I like doing them.  I do not like them.  Only an idiot would.
5 Comments

11/4/2024 3 Comments

Baking With Apraxia

I love cooking.  It is the best thing that I do with my Mom.  Making cakes together became my favorite thing when I got a calendar with a different cake picture on it each month.   My Mom made every cake with a little assistance from me.  Not having the ability to control my motor makes it really difficult to do most of the steps.   But I can work the stand mixer really well.  That is really basic stuff, but having that down lets me learn something else.  Four things I want to learn are 1) using the scale to measure ingredients, 2) measuring with measuring cups and spoons, 3) cracking an egg without making it explode, and 4) being able to pour batter into the pans.  I am practicing these things all the time.  Having a mom that is always cooking lets me practice often.  Also, all the stuff we make is gluten free, which actually has made my apraxia better.

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3 Comments

10/9/2024 5 Comments

10 Reasons Apraxia Sucks

1. Apraxia sucks because when you want something too much, you are guaranteed to screw up and do the opposite of what you need to do.

2. Apraxia sucks because millions of people just want someone that they can talk to and are unable to say that.

3. Apraxia sucks because we are really super smart and schools teach us like we are idiots, totally not able to understand the simplest concept.

4. Apraxia sucks because without speech, people assume we can't hear.  They talk about us the same way you would talk about a pet.

5. Apraxia sucks because, warm or cold, I am unable to simply change my clothes to make myself comfortable.  What that means is that I am always freezing or too hot.

6.  Apraxia sucks because 10-year-olds are supposed to be riding bikes and playing games.  I am so useless at both.

7.  Apraxia sucks because people try to use our Apraxia to justify ignoring us.  They usually believe that we are only able to understand pictures, and they do not talk to us like we are there. 

8. Apraxia sucks because we make so many important things go wrong because we cannot get control.

9.  Apraxia sucks because practically all the treatments we receive for Autism are really pointless.  For example, "make yourself point to green."  I know what green is.  I see where it is, only my hand goes to blue.  And now you think I don't know what green is.

10.  Apraxia sucks because being apraxic always gets in the way of what I want to do and what I want to say.  I am working so hard to spell what I want to say.  Have you listened?

5 Comments

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