Autism · Sensory Processing Disorder

Sometimes The Basics Are The Most Difficult

My son showed me exactly how he planned to install a CPU into his computer yesterday.

(If you don’t know what that is, don’t worry. You are in good company. I listen to my son tell me all about computer parts for most of the day, every day, and I am still not 100% sure I know what it really is.)

He walked me through step by step, in painstaking detail, not only how to install it, but how the actual device functions. The way it communicates, what one set of cords does vs. the other, why the motherboard goes in this spot, and so many more things that I completely did not understand a single word of.

I sat there in awe, so proud of the man he is becoming. He is realizing his strengths, and using them to compensate for the aspects of his life that are difficult.

It is exactly what he has been working towards for almost four years now.

And, I couldn’t help but feel a pang of confusion and disbelief.

He can do all of this.

But he may not be able to navigate dinner tonight.

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It’s something I don’t think we talk about as much as we should. A child on the autism spectrum often masters things are that outrageously difficult for a NT individual – sometimes even impossible (never being taught to build a computer, and yet being able to do just that is a small example).

But it’s the basics that are difficult.

Eating.

Sleeping.

Drinking Water.

Shopping.

Taking Medicines.

Showering.

Getting Dressed.

Playing.

These are the areas of my son’s life that are the most complicated. 

They are also the areas of my mothering that are the most challenging.

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They happen every single day, all day. Eating and sleeping are basic life requirements, and yet they are, without a doubt, the most challenging aspects of my son’s life.

“I’m hungry, but I can’t eat.”

“I’m tired, but I can’t sleep.”

“I want to go to the store and look at air fresheners, but I can’t be in the store.”

He has learned to better communicate what is happening. And it’s so helpful. Verbally being able to say I can’t do something is a big deal around here.

And I am grateful for it.

And it is exhausting.

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Here is an average day mothering my son through the basics of his life:

Morning

He didn’t want breakfast at 9:00 AM. It’s now 10:00 AM. Time to try again.

Nope. OK. I will ask again at 10:30 AM and this time I will offer bagels and cream cheese. That’s soft, it might work.

Good, bagels and cream cheese it is. Except, no. He took one bite and gagged.

OK, scrambled eggs worked. Now we can get his medicines prepped.

He said he would take them in an hour – he just can’t right now with the taste of egg in his mouth. I need to set an alarm so I don’t forget.

11:45 AM and meds are down.

Afternoon

It’s 2:00 PM and he wants to go to the pet store. I need him to eat something first. The pet store is usually OK, but the lighting and smells can be weird, and we have had meltdowns there before.

Deep breath.

It’s 2:30 PM and I am making a turkey sandwich. One of his favorites. We should be good to go.

Evening

It’s dinner time and he wants to eat in his room again. There are studies that show families that eat at the table together do well. But he hates the feeling of the chair on his hip. And he can’t stand the sound of his brother chewing, or tapping his feet on the floor, or both.

Am I a bad mom for just letting him eat the flippin’ lasagna alone? At least he is eating. I am going to let it go.

We are getting close to bedtime and I am thinking through how to help him shower. The smell of teenage boy is real. I know it’s tough for him, but we gotta do it.

He balks. Shoot.

I decide to entice him with the brand new items we bought at Lush. Maybe the shower gel will be my friend right now.

He is seriously not going to do it. He says it is just too much tonight and that he promises to shower tomorrow. I decide to respect his wishes. He is communicating how he feels. That is progress.

We have nothing planned outside of our house tomorrow. It should be calmer. He should be able to keep that promise.

The Middle of The Night

It’s 1:30 AM and he is still up. He wants to sleep. It’s obvious that he is tired. But he just can’t. I ask him if he wants to talk to me a little, just to get drowsy.

He does.

I feel my eyelids closing every once in a while, but for the most part, I am pleased that he is so calm. Instead of getting anxious he is settling down.

By 2:15 AM, he is asleep. By 2:16 AM, so am I.

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Please know, I am not sharing this to complain. In fact, as I type this, I feel so grateful at how adept my son has become at communicating his needs.

Our life necessarily looks different. My son spends more time learning the basics, like eating and hygiene, than he ever will in subjects like science and math.

And I am 100% OK with it.

What makes it complicated is the rest of the world. Not understanding, assuming he is spoiled, questioning why I allow him to make the decision instead of just demanding obedience.  Too often, my son is questioned as to why he just can’t take the meds, eat the foods, go to the store.

By doctors. By other kids. By his brother.

He doesn’t have an answer to that question. If he did, we wouldn’t be spending so much time on these things.

And, too often, I am also questioned. By the well-meaning specialist, by a mom who doesn’t know us very well, by my youngest son.

But I have an answer.

Everyone is different. Everyone has strengths and weaknesses. My son is stronger in his strengths than any 13-year-old I know. He also works harder, every single day, on the things that are tough for him.

Sometimes the basics are the most difficult.

Sometimes simple, isn’t simple.

Sometimes development looks wildly different for one child vs. another.

And sometimes, we just have to proceed at the pace that is right for our children.

I don’t think the basics will ever be easy for my son. But I have seen enough progress to know this –

He will figure out how to best approach eating, sleeping and shopping.

Until then, I will help him.

It’s the most basic premise of all.

6 thoughts on “Sometimes The Basics Are The Most Difficult

  1. I know you didn’t write this to show off how awesome you are. But you are! I’m so grateful for your son that you are patient and kind to him. (Love is patient, love is kind . . . .) (And you may be thinking about how you do it imperfectly, but you do it, I know.)

    And although I’m sad for him that most people don’t understand him and what he needs the fact that one person does — and his mother, no less — is huge. All it takes is one lit candle to dispel darkness, and you are that one candle for him.

  2. We, too, struggle with one child not understanding and then lacking the grace in that lack of understanding.

    I struggle as a mom to want the world to understand that no, I’m not a pushover or spoiling them. Even at 14, the premature “food texture is weird” thing still shows up. I have mostly given up on vegetables for my one kid. If he eats four pieces of corn–as in four KERNALS–it’s a good day. (And this is NOT my autistic kid!). Meat is huge for another. Being invited to eat over peoples’ houses is not fun. I really dislike restaurants.

    One thing we have noticed with Ethan, our autistic kiddo, that some things–weird ones–are getting easier. He can get a hair cut. In a chair with someone using SCISSORS. And go to the dentist. Holy cow, did I never see that one happening! There are other things–like my niece’s wedding on Friday with a LOUD reception, well, he endured. We brought the headphones and he survived. It hurts my heart, though, that situations of celebration for us are something to be endured for him.

  3. Thank you for your blog! My son has spd too and it is a challenge. It does help that as he gets older he can tell me what is going on and what he needs. He had issues getting to sleep at night as well. His mind would be racing and he had difficulty getting to sleep. All the bad thoughts would come to his mind and it was hard to turn off the thoughts and relax. We decided to give the ILS Dreampad a try and it has helped tremendously. It is a bit pricey and the pillow we got wore out after a year but we now use it under another pillow and it is still helping. Using the pillow he falls asleep much easier and can relax. Here is the link: http://integratedlistening.com/products/dreampad/

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