Special Needs Motherhood: 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.

Our life necessarily looks different. For my brilliant son, sometimes the basics are the most difficult.  #lifeskills #specialneeds #specialneedsmom #autism

 

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).

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.

Special Needs Motherhood: Sometimes The Basics Are The Most Difficult

 

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.

I am grateful for it.

And it is exhausting.

Special Needs Motherhood: Sometimes The Basics Are The Most Difficult

Here is an example of 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.

Special Needs Motherhood: Sometimes The Basics Are The Most Difficult

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. 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.


Motherhood: Just Because It’s Difficult, Doesn’t Mean You are Doing it Wrong

Before You Judge A Special Needs Parent

 

17 thoughts on “Special Needs Motherhood: 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/

  4. Yup. I’d love for there to be a list of the life hacks/workarounds we’ve figured out. For example, my teen cannot tie shoes. How critical is this life skills? Um….it’s not. There are eleventy billion kinds of slip-on shoes in the world, but when she WANTS to wear tennis shoes….Lock Laces come to the rescue! I know we all have these hacks that make life more peaceful and accessible.

  5. As an autistic adult, I am so SO happy to read about how you respect your son and honor his needs. There is so much more bubbling inside me that I don’t know the words for, but I just want to say THANK YOU for being *that kind* of parent <3

    1. I can’t tell you how much this means to me. I am so grateful you took the time to encourage me that I am on the right track for my son.
      Thank you so much.
      With love,
      Shawna

  6. As always Shawna, just beautiful. You always keep it real and after just enduring a meltdown with a thrown little green Bissell cleaner which involved lots of spilled yuck – it is always so nice to know that I am not alone. On the plus side, he apologized and owned his melt-down and doesn’t want to feel out of control like that again. This is an AMAZINGLY big deal and I am so proud of him. Finally on the shower front- we can’t do showers either (16 yo boy and yes teen boy stink is real), but we can do baths. For some reason using a bucket to pour the water over the head is tolerable, whereas the shower is completely unbearable. I am sure that you have already tried it, but for anyone else out there struggling with the bathing world – this has been life changing for us. Thanks so much for your blog Shawna – it is a true light in a world that is so judging of us special needs moms.

    Thanks!

    1. Thank you Shawna. This is just what I needed. My 11 year old with ASD has troubles in the morning to go to school and sleeping in the evenings as well. I now realize I havent really been listening to his needs but its clear now, thank you. I will also stop listening to others who have advice, calling him spoiled, when they have no experience at all.

  7. Thanks Shawna, the struggle is real (quoting Penny Williams). I also have an 11 year old with ASD. We’ve given up on family dinners (the smells, seeing what other members of the family actually eat, the noise of other people chewing), but the guilt feeling hasn’t given up on me. At least the child is eating when he is at his computer. We are nearly through with going to restaurants. We are definitely through with shopping and trying to wear closed shoes (even non-tie laces and seamless socks couldn’t help us), let’s hope the thongs he has been wearing for 3 years now can last a bit longer. We are trying to get an orangey build-up of some description off his scalp because of giving hair washing a miss so many times (guilt guilt guilt). So nice to see we’re not the only ones. Please keep blogging Shawna and hang in there…

    1. Thank you so much for your encouragement, Jane. That Penny sure knows that she’s talking about! I can identify with every single thing you described. It sounds like we might be living the same life!

  8. You are the only person I’ve read about who TRULY gets it. Oh my goodness you could be me. Thank you so much for this. It is so validating.

  9. It’s my first time to read your blog, but I felt like you’re talking to me and about me. Though we are Japanese/Nigerian family in Tokyo and I understand that every one of us is different, I do feel that I am being understood and accepted because I go through what you go through. I now understand that what I experience is not me alone. Yes, that assurance is what I needed most, because I have been feeling so lonely in this journey of raising our very special son, which I never knew that I was feeling this way till even now. Thank you so much once again for your transparency and sharing your precious journey and challenge with us. You cannot imagine how much encouragement I received. I definitely want to stay connected with your blog. God bless you, your precious son and all your children and family members real good. Much love from the land of rising sun

Leave a Reply

Your email address will not be published. Required fields are marked *