Autism is Hard.

Gracie, my 10 year old daughter, wanted to make herself a hot pocket for a snack. I am trying very hard to help make her more independent, to give her the skills and confidence she needs to get through every day tasks.  Baby steps.

I cooked the hot pocket for her. When the microwave “beeped”, I knew this moment would be an important one.

Gracie heard the beep, came to the kitchen and just stood there looking at the microwave. She had a blank stare on her face. Like, she knew what she had to do, but something was not registering. I said a quick “God, please help me through this” prayer and made my way to the kitchen.

“Okay Gracie, first we are going to get a plate.”

“Where?”

“Well, I do not know, can you tell me where there is a plate?”

(She looks around for about three minutes.)

“There”

(She points to the plate I had laid out for her)

“Perfect, so that will be the plate you use.”

(She looks at the empty plate, looks at the microwave, then looks at me. This is a pattern for the next five minutes.)

“Now what?”

“We need to get  the hot pocket out of the microwave.”

(Very long pause as she is looking around, not quite focusing on anything.)

“How?”

(At this point I feel like a pretty crappy mother. How can my daughter not know how to open the microwave. I suck,I totally suck at this)

“See that button right there? Push it and see what happens.”

(Very slowly she goes to push the microwave button. Gently at first. It takes her a good five tries before she has the strength to open the microwave door.)

“That scared the crap out of me.”

(I do not care about language, I am thankful she was able to push the button.)

“Good job. Now, go ahead and grab the plate.”

(Again, long pause. Looking at her hot pocket in the microwave, then looking at the plate she needs to transport the hot pocket on to.)

“Okay”

(I think she is ready. She looks ready. Right? Please let her be ready.)

“Very carefully, take the hot pocket and put it on the plate.”

(Maybe not. She is second guessing herself. If only she knew what I can see. She can do this.)

“Why do I have to do this?”

(She is standing there. I can tell she does not know what she should do, but she knows she has to do something. Please, she knows this. She has to know this.)

“Because you are hungry and want to eat.”

(She is getting annoyed. I do not care. Let her get annoyed with me, I can take it. Just let her make the move.)

“Fine.”

(It took Gracie about five minutes to work herself up to grab the hot pocket. She did it.)

“Okay, can I eat now.”

(Huge sigh of relief)

“You sure can, you did good kid, you did good!”

(And there comes the eye roll.)

“Whatever.”

Autism is hard.

I am so new into this journey. Half the time I do not know if I am doing more harm than good to her.

I worry for her and her future.

Maybe because I am getting “older” or maybe because I am currently reading an amazing book “My Descent into Death (By Howard Storm) but I find myself thinking a lot about dying lately. Specifically me dying.

Look, I know sooner or later it will happen. I just need to know that whenever it does happen, Gracie will be okay. I pray to God every day not to take me before Gracie is ready.

I know that sounds morbid. I know to the non believers out there I sound like a basket case (perhaps even to the believers too?)

I just need Gracie to be okay. Whether I am here or not.

This is not an easy life. We were not promised an easy life. I know this.

I just need to have the daily strength and guidance to see Gracie through this life. To get her ready. To teach her the everyday skills one needs to get through life.

Some days I know I suck.

Some days I know I totally have this.

Most days, well, most days, I worry.

And at the end of the day, when I am in bed trying to fall asleep, I recap my day and try to learn from it. What can I do better tomorrow that I maybe did not do so well at today?

It’s hard.

Life is hard.

Autism is hard.
gracie gap

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15 thoughts on “Autism is Hard.

  1. Wow.. What a Heart felt piece. Excellent and poignant. Very real …. I can totally understand your prayers .
    There is so much we take for granted…… Like heating up a Hot Pocket…….

  2. Autism is hard.
    It sounds like you’re rocking it, though. Persistence and consistency. Create new scripts in her head until she knows exactly what to do when that microwave goes off. Good job, mama.

  3. Omg thank you so much for this post!!!!
    You have just validated how me and my husband have felt the last 6 years with our eldest son.
    It is hard especially when they look as everyone else does.
    So thank you!!!! Makes me feel sane

  4. Omg thank you so much for this post!!!!
    You have just validated how me and my husband have felt like these last 6 years.
    So thank you for your post it’s made me feel sane again with it all

  5. Im an autism mom too. I know and understand exactly what your saying.
    I’ve spent the last 12 years teaching my son how to be semi independant.
    The worry about what will happen to my son, when I die, is a constant and steady thing.
    It is for many parents of special needs children. Your not alone.
    It’s a shame we can’t all move into a giant caste, with a moat to ensure nobody wanders off.
    Then the parents could all help. And if you die, the other parents would be there to help.
    That’s my autism fairy tale. I guess we need to join together, to be the Knight in shining armour.

  6. I think all of us think about “death.” I know I do daily because I know his schedule, what he can and cannot do, his fears. I can get through everything else but the thought of not knowing what will happen to him if I die terrifies me.

  7. It’s always the simple things people take for granted. It takes so much patience just to get them through the small things .

  8. Perfect!
    Act calm, be matter of fact, give straight-forward, comprehensive, patient but not patronising instruction and your child will learn.
    The sooner you teach independence and praise them for helping run the household, the more they will thrive and feel valued.
    If you believe that there are no limits for your child then they will pick up on that and their confidence will blossom.

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