The Meaning of Time.

Time, I think moves at a different pace for the neurotypical world around my son and for me as I try to stay with him in his world.  If only the world took more time to listen, to understand and accept.  To be patient.  To wait for him.  

I take him for a bath.  I’m still explaining how to use the toilet before getting in the tub.  First, he doesn’t need to use the toilet, then he changes his mind.  He doesn’t get the concept of pee versus poop.  He will say he has to do one and then, he’ll unload the other.

Flash cards have crossed my mind.  I’ve talked about the color of pee/poop and what each is but that information just doesn’t help when it comes down to what he needs to do.  I wonder how long this will continue, or whether he knows and simply cannot express as well as understand, and if he just wants me to shut up.

Cool for me - definitely not for the child.

I wonder how long he will take a bath instead of a shower.  (He’s too accident prone to use the shower.  Plus, he freaks out with water on his head.)  Not that there’s anything wrong with a bath, except the time it takes.  Time and I aren’t friends.  It always leaves too fast, pushing me into the future when I’m not ready. I don’t know what he understands of “time”, minutes, hours, weeks in a year.  I know he knows the days of the week.  Not sure about the rest.

He gets in the bath.  He’s playing with sponges.  I wash him.  I wonder when will he be able to wash himself.

I wash his hair.  He grimaces, whines, engages in heavy echolalia (“DRAW A CIRCLE”) to cope through shampooing and rinsing, trying to push me away.  If water touches his face, he screams, “CLEAN IT!”  I do, immediately, with a dry washcloth I have next to me at all times for such “emergencies”.

I try to make him laugh during shampoo.  It works.  Silently, in my mind, again, I wonder.  Will he be able to this by himself someday?  I dry his hair.  He yells out, making the sound of an alarm to indicate his strong distaste.  Then, as is standard routine, I give him a few minutes to play before I get him out.

The temperature of the water must be lukewarm.  Anything close to warmer than luke warm is as though I have set him in a scalding pot on a stove.  Despite his complete lack of sensitivity to smell (he could live next door to a dump and never smell a thing), he is highly sensitive to warm temperature whether it’s washing or eating.  Even lukewarm french fries must be cooled with the air conditioner in the car before being consumable.

During the bath, I can’t think of stepping out to grab a towel.  I cannot move five feet away.  It’s too dangerous.  He has no concept of “slippery”, “danger”, what to do or not to do, etc.  So, I sit my ass down on the toilet lid and wait, multiple towels and supplies ready at all times.

During this bath, he did something new.  He took those sponges and stacked them.  Talking to himself, he said the sponges were lettuce, pickles, cheese, tomatoes and the bun.  He made a sandwich, copying a cartoon he’d watched recently and turned it into pretend play.  He kept calling the sponges “Spongebobs”.  He talked about making a “Krabby Patty”.

I don’t usually see pretend play.  A little step forward.  Even in that, my heart was lined with the knowledge that this kind of play should have happened around the time he was 2 years old.  He’s nearly 6.  That makes it the oddest feeling.

Joy and sadness.  Progress.   Yet, catching up -still so far away.  When you shake it up, and add fear, you will usually find a parent of an autistic child on the other end.  And there I was.

Back in the bedroom, I struggle to get him to get dressed, to gently comb his hair without him grabbing my arm and pushing it away, screaming and yelling.  He barely tolerates the clipping of finger and toenails, which do not get groomed until they are far too long.  Feat accomplished.

We sit down for homework.  Unlike other nights, he could not do it at all.  “It” was this:

Time.  How ironic.  He had to circle whether it was morning, afternoon or evening.  I realized that he has no concept of those three words.  No understanding that breakfast, lunch and dinner occur during one of those times, or that a girl depicted eating toast, cereal and juice would be having “breakfast” and that “breakfast” would happen in the “morning.”   He does not understand that there are foods associated with breakfast, lunch and dinner that would clue one in as to what time it is, and certainly not what those foods might be.

He could not guess the girl walking up the steps with a book (which he thought was a milk carton) was going to school, even after being told she had a book.  When I asked where he goes every morning, he had no answer.  He just looked at me blankly.  I gave him hints and time to answer.  I gave him the answer.  Then, I asked the question again.  The answer was lost.

I was scared and frustrated.  I knew he was trying.  And I looked at him, looking at me.  And despite it all, we laughed.  In that moment, there was no fear, or judgment, no frustration, or anger.  Just laughter.  I saw the glint in my son’s eyes, relaxation,  and a desire to please me.  And love.  And I just loved back.

The rest will come.

In time.

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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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22 Responses to The Meaning of Time.

  1. What can I say? Time certainly feels like the enemy sometimes. It just moves so quickly. How can our kids ever catch up? That part sucks. But the love is really the most important thing in the end. The laughter. I’ll bet anything that one day you will be writing about the days when your son wouldn’t/couldn’t take a shower or when he didn’t understand the concept of time. One day.

    • solodialogue says:

      Time is relative, right? It seems to go a lot slower when you’re laughing, and that’s a good thing. Writing about mastering those things, (and I will someday!) I will be reminded of you telling me how that day will come. 😉

  2. kcunning says:

    Jake only began to understand time when I started measuring it in lists of things to do. It was the only way to give his life order, when he was small, and everything seemed so chaotic. He would memorize the lists, and take comfort that things happened the same way each time.

    Now, he’s militant about time.

    “Bedtime.”
    “It’s 8:58 and thirty-two seconds. It is not.”

    “Mom, we have to leave by 6:53, and it’s 6:55.”
    “It’ll be fine.”
    “… But it’s 6:55.”

    As for showers, Jake was seven when I finally tired of washing his hair in the bath. By then, he was less sensitive, though he still must have a towel in the shower to dry his face, and we have to use no-tears shampoo.

    • solodialogue says:

      Measuring time in “lists of things to do” is an interesting idea but I’m not sure I get it. Do you mean like time it takes to get ready for school – 45 minutes… and then breaking it down into minutes for each activity? Or time, like time of day for school, homework, sleep, morning noon night? How did you do it? I think you have something more to teach me here…

      I like knowing that it took Jake til he was 7. Although comparisons are not something I “should” do, it eases the minor stresses. Thanks. (and what would we do without no tears shampoo?!)

  3. Lisa says:

    You just described Tate and our bath experiences. The temperature, the dislike of his face being wet, the lack of understanding of slippery. He, too, would have struggled with the time of day homework.

    Like you, love does trump the feelings of frustration, fear, unease. I do think our children run on their own time…and at some point they will be able to do these tasks on their own. It’s the waiting…and the patience that goes with it…that need to be tempered with love so we can get through it.

    BTW, we have found that if we let Tate hold the shower hose, he can do the rinsing on his own, with prompts from us.

    • solodialogue says:

      Waiting and patience with love. That’s the formula right there isn’t it? Well said.

      And on that holding the shower hose? Toots screamed and dropped it. See how that waiting and patience formula works? Lol!

  4. Kelly Hafer says:

    I just want to share one thing that has helped me get the boys to accept water on their faces when I rinse their heads: I count to five. I tell them, “I’m going to count to five. When I reach ‘5’, you’ll be all done.” This took about three weeks for them to understand. Of course, sometimes I have to count slowly (if their hair is in need of a cut). I also ask them to count with me. It’s a two-fer, that way.

    Clearly, not the point of your post, but I thought I would share. 🙂

    • Kelly Hafer says:

      Oh, and I have them take a dry wash cloth and press it over their eyes throughout the entire head washing time. Then, once it is finished, I very quickly dry their faces off. Anyway, it is working for us.

    • Mom2MissK says:

      I am sooooooo gonna steal that! Thank you!!!

    • solodialogue says:

      I knew the boys were a couple that had the shower detail mastered and secretly, I hoped you’d share your “recipe” for that! Hmm… if I start counting, I think he may just think I’m melting with him as that is some of his favorite meltdown material… I’m going to try it anyway. On the weekend, after morning meds…

  5. blogginglily says:

    I’m slowly coming to accept that I need to reject the concept of “catching up”. The whole idea that there’s some component of time to Lily’s development and if she’s not ‘caught up’ then she’s ‘falling behind’ adds such an element of time-related stress. But it’s hard.

  6. Lana Rush says:

    Time. There’s either never enough (usually during the night) or there’s too much (counting the minutes until bedtime some nights!). I’m with Jim – catching up/falling behind adds a whole other layer of stress.

    And at my house – toast, cereal and juice could be served at any time of the day so I can understand the cause for confusion! 🙂 LOVE that checkered shirt!

    • solodialogue says:

      Love the “too much until bedtime”! Haha!

      I was thinking about the meals associated with food and, yes, you could eat just about any of those any time which soooo will add to the confusion in our future. I’m sure of it.

  7. “And I just loved back.” Yes, this is it. Time is a strange thing for us, not just because of autism, but our lives are divided into strange blocks of two or three years. All the normal processes of living in a place get compressed. It is a strange life, and I find it much easier letting go of what is supposed to happen and when. Pudding has her own agenda, that is for sure! As for baths, Pudding has made the switch to showers as she has one in her en-suite. She enjoys drawing on the door in the steam. Strangely, I miss the moments of relaxation just sitting by the bath as the two of them played together. I have a strange ache for that time…which shows how it moves both ways. 🙂

    • solodialogue says:

      Strange blocks of time in places 2-3 years. That is a very different lifestyle. Excitement, fear, adventures which most of us will only dream of. I want to see zebras crossing the road. I don’t ever want to drive with Kombi buses.

      I like how you put it that “Pudding has her own agenda” because it means she knows when things should happen and that they will happen in that time frame. I’m sure it’s quite accurate.

      And yes, the grass is always greener, isn’t it? Next I will worry about the shower. And so it goes.

  8. utkallie says:

    You just described bath time at our house! Cameron loves baths but hates them if one little thing goes awry. Most people would not have the patience to cater to this child’s need for the “perfect” bathtime, but for us, it’s just what we do.

    Over the past three years, I have seen Cameron grow socially, emotionally, and physically, on his own time. When you see the other NT kids talking and doing “normal” things, it can be a hard pillow to swallow not knowing if your child will ever be in the same time period developmentally as those other kids. I’ve learned that I have no choice but to just let it go and enjoy Cam for who he is. To heck with the rest of the world and their developmentally appropriate milestones!

    • solodialogue says:

      Funny how important bath time is to all of our kids in their own ways!

      As to time, our kids are going to move through it at their own pace. Accepting that is the hard part.

  9. Mom2MissK says:

    I HATE time. I know, I know… I seriously need to learn to relax and let time bring what may come, but it’s not in my nature. It never has been. We are always running late for something or just missing something else. I think time has it in for me.

    That said, I really appreciate taking the ‘time’ out to read your bath story. It sounds like bath time here too. Water temp…. Check. Dry towel…. Check. Special shampoo ritual…. Check. But those minutes after the washing is done are some of Little Miss’s happiest minutes of the day. I giess it all *is* worth it

    • solodialogue says:

      You snuck in that word, didn’t you, you sneaky girl! 😉 I too am always late for or missing something! I have nightmares about that!

      Toots will try to sneak out of a bath these days, but once I get him through the actual washing, he doesn’t want to get out!

  10. Pingback: Autism/PDD - The News You Need This Week | Our Special Families Village

  11. eof737 says:

    Interesting observations… 🙂

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