Helplessness.

There is a feeling you get when you’re dreaming.  You know.  You are somewhere doing something and you have to get somewhere else, but you can’t.  The phone is ringing and you can’t get to it.  Or you’re trapped.  You just cannot accomplish the thing you need to do.  You have no control.  You’re helpless.

Sometimes, I feel like I’m living inside that “dream”.

Every day, with my son, I am – for want of any better term – the coach.  I want to make just a bit of progress pushing the boulder just the tiniest millimeter forward so we can see more of the path in front of us.  When I turn around, it’s rolled right back where we started.

I try to brush that bottom tooth a little longer.  I hope he can hold a towel to dry the backs of his hands.  I wish he could dress himself in less than a half hour.  I hope he will swallow that bite of applesauce without gagging.

None of that ever happens on a consistent basis.  Sometimes, we can get through that last bite of applesauce.  None of the rest of it, really, happens at all.

The hooks and cubbies that my son simply cannot fathom...

When we arrive to his school, he will take off his coat, but he’s just as content to let it fall to the floor as hang it on his designated hook.  He cannot hang up his backpack, take out his water bottle and his folder, and sit at his table without multiple (and I do mean multiple) prompts.  Instead, he will look at the ceiling, softly talking to himself.

Sit him down and he can read an encyclopedia.  He can recite math equations above his grade level.  He can answer the teacher’s questions if she can get his attention.

He cannot do simple tasks of daily living.

I’m frustrated.  I’ve done the medical stuff.  We work the ABA programs.  We do the basic tasks of daily living – bath, wash hands, use toilet, dress, undress, eat, brush teeth and hair – every day,  a number of times per day – not just for real, but as programs to structured to teach.  But he still cannot brush his teeth, comb his hair or eat on his own.  He cannot hang up his stuff at school before he sits down to learn.

Right now, if left to his own devices, he’ll drop whatever food he is eating on the floor to run and play with a toy or stare at a light, even if he’s starving.  If a food item is in its “whole” state, (burger, pop-tart, banana) he will not touch it until someone else cuts it up into bite size pieces. If the piece is the wrong size, he walks.  He may end up eating Lunchable Nachos for life.

Multi-tasking...

I can’t even be sure he will use the bathroom without me taking him there.  For some reason, he’s now trying to “hold” back and when I ask him if he needs to use the toilet he always says no.  When I take him there anyway, he only relieves himself with “coaching”.

He is not afraid of the toilet or the bathroom.  Even if he is just standing around, doing absolutely nothing, he will not go when he need to.  He will deny it.  Once on the throne, he crosses his legs, squirms and holds, until I talk him through it.  We cheer when it’s completed.  He expresses relief.  Then, he repeats the same thing the next day.

And so, despite all the help everyone provides daily, I’m still left with that feeling of helplessness. Nothing I do, prompt, reward, or take away makes even the slightest impact toward basic independence.  Yes, I know he’s only five.  All of his classmates can do all these basic things.  They could do them before they were five.  And yes, I know I’m not supposed to compare my kid but that’s just my own human nature.

I stand back and watch him zone out while the world gets on with the business of every day.  I can’t reach him.  In my heart, I hope this is just one of many stages.  Yet, as a parent, I still have that fear inside that maybe he will not be able to do these things for himself someday.

And maybe, it’s unfounded, but sometimes, I still feel helpless.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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23 Responses to Helplessness.

  1. Teresa says:

    Many of us continue to have these feelings. We look at a friend or relative’s child and see the ‘normalcy’. Sometimes our introspection is triggered by an expected, but unmet milestone. Sometimes it’s just because it’s Friday and we’re tired.

    As parents to a special needs child, we’re in it for the long haul. God teaches us patience…though many days it’s a tough lesson. Or at least it is for me. When progress seems too slow I was often encouraged by looking beyond yesterday to six months or a year ago. Sometimes growth is so slow we don’t see it until we look a little further back.

    Hang in there. Just know that “Did you poop?” and “Did you wipe your butt?” may continue to be part of your vocabulary for some time.

    • solodialogue says:

      You have some beautiful words, Teresa. You so hit it on the head with “just because it’s Friday and we’re tired” for me. And you are right about growth being so slow that we have to “look back” to see it sometimes. A year ago, I would’ve been happy for him to hold it until we get to the toilet. And that’s perspective!

  2. Karen:

    Have you ever tried Developmental, Individual-Difference, Relationship-Based model, “DIR®/Floortime” for your son? That is what our occupational therapist is using with my son who is 2 1/2. He has made great progress as far as staying connected is concerned. He also undergoes PT and speech, as he is non verbal. I googled it and here is one of many links and you may already be aware of it. http://www.autismweb.com/floortime.htm

    By the way, I think that we all feel helpless at one time or another, when it comes to our kids. I think it is normal and something that we all have to work our way through. We have 3 kids with one disability or another. 2 of them are on the spectrum and 1 with spina bifida. 2 of them also have heart defects. Neither will require medical intervention, but will need to be monitored. Our main feeling of helplessness is more of is this ever going to stop and what is next! And sometimes, with our youngest, we get that helpless feeling, when he is screaming and he can’t communicate what he wants or needs, due to being non verbal!

    Robert

    • solodialogue says:

      Thanks Robert. I have not tried it. I’ve barely read about it but you have provoked my interest and I will check it out.

      It is such a really great feeling to know that we can all lend our voices to each other in support. I agree that we all get to feeling helpless sometimes. I let it out here to give myself an outlet knowing there are people out there, like you, who understand. I appreciate the support more than I could ever say. 🙂

  3. eof737 says:

    hold on Karen… it is overwhelming and you are doing supremely challenging work. Take a moment and decompress. Go out and have that chai tea; a mani/pedi. You are deserving and Tootles will be fine. Blessings! 🙂

  4. Ianus Christius says:

    …thank for stopping by…

  5. Lana says:

    You have taken the words right out of my mouth – and heart. I try not to think about the future too much because I want to curl up in the fetal position, stick my fingers in my ears, and sing “lalalala” over and over again. But sometimes, as I’m prompting the same thing I’ve been prompting for a year, I can’t help but wonder if I’ll still be doing this 20 years from now. All any of us can do is take it one day at a time. And pray that one day, that lightbulb goes off and they hang up that coat!!

  6. So frustrating, isn’t it? We can read all the books, do the therapies, and pretty much get everything right, but at the end of the day our children will still have autism. It’s going to get easier one of these days, I’m sure of it. Hang in there!

    • solodialogue says:

      Thanks for the support Christy. I’m missing reading you. 😦 Maybe soon?

      • Awww, thanks. We’re going through some crazy stuff- A. might have had a seizure this week, not sure but we were sitting in McDonalds at the time and he scared me to death. Got a neurology apointment made. And then we realized that a few of the “locals” are only a few clicks away from our blog. So we’re either going to redo what we have to make it something we don’t mind everyone reading, or start out somewhere else a little more anonymously. We’ll probably spend some more time figuring that out once we get things back to normal for our little guy (hopefully that will be sometime before he’s 18!)

      • solodialogue says:

        So sorry to hear of A’s possible seizure but very excited for your neurology appointment. Please stay in touch! I will remove the link until you let me know you’ve resurfaced and up it will go again!! 🙂

  7. nikki says:

    Unfortunately, for me, that helpless feeling also leads to a loss of patience that even deep breaths can’t solve. I just get so frustrated sometimes that I have to walk away and regroup, leave my son standing there with his pants down because he is too focused on the shiny faucet to pull them up. I completely understand, and I’m thinking of you, hoping that tomorrow you’ll feel refreshed.

  8. dixieredmond says:

    Karen – my boy is almost 19 now. I remember reading someone’s posts when my boy was your age who had a 19 year old. She was talking about all the things her son was doing, and I couldn’t imagine Alex doing those things at that time. But lo and behold he is doing so much more than I thought possible at the time. I watched some videos recently and I’m so glad I did, because I have forgotten so much of how Alex grown in this way. I remember feeling exactly the way you do. Now each child is his own being and he/she will grow in spite of us and because of us, both. In their own time and in their own way.

    I’m reminding myself that I will look back on present challenges in the same way as I look at the earlier ones.

    Sending what a friend of mine calls, “strong thoughts”.

    Dixie

    • solodialogue says:

      Thanks Dixie. I hope when my son is 19, I can write this same comment to a mom who is where I am now. I have the belief inside that we will get there from here. I don’t know how but I guess that’s just life. In truth, I don’t want to go to the last page and see how the book turns out. I have to learn “patience” as Teresa says, and enjoy the moments as they come. 🙂

  9. Amen, Sister! Defitnitely feeling what your wrote. The fear of the future, the uncertainty, the will he ever get there? **hugs**

    Also, thanks for making me giggle about the bathroom thing. My son literally holds himself all day long. I know he’s *dying* to go. I’m all “do you need to do something?” “Is there somewhere you need to go ?” (then I finally give up on hoping he’ll self initiate and I’m all “Wanna go potty?” “NO” is always the answer. When I can finally convince him to go, i don’t need to coach him to relieve himself, but he’ll suddenly just let forth a massive stream that usually goes everywhere because he literally cannot wait to “get into position” so his voiding goes where it’s meant to: the porcelain throne. Also, when he finally does pee, he sometimes says “hurts” and it’s because he’s held it too long!! I try to explain this to him and I try to make the bathroom exciting and fun, but he NEVER wants to use it!!

  10. Karla (Mom2MissK) says:

    I feel for you, Karen. Right now, Little Miss is throwing a tantrum meltdown because she has forgotten where she put her sippy cup (three seconds ago)…. again. And I know that the only way we’re going to ge tthrough this is if I take her hand, walk her to the cup, pick up the cup, and put it in her hands. Again.

    It’s hard not to get caught up in the daily failures when they make up so much of your day – and are immediately repeated the next day. But like so many others have said in their comments, sometimes you need to look back and see how far you have come in order to gether the strength to push that boulder up over the next inch. T has come a long way. We both know this. Give yourself a little credit and know I’m rooting for you.

    And now? I gotta go get that darn sippy cup.

    • Karla (Mom2MissK) says:

      P.S. It’s a long shot, but having a visual schedule in her cubby really helped Little Miss with the hanging up her coat/backpack thing. Maybe try one for T?

      • solodialogue says:

        We are using a schedule – it’s written. Pictures have no affect on him. But he ignores the schedule totally. However, I talked the ABA staff into using the “inner voice” to talk him through the morning routine in that study I posted from England and guess what? It’s (knock on wood) working!! 🙂

    • solodialogue says:

      Thanks Karla. I wonder how many times a day we just think the word “again”…

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