Don’t Know Why.

There is something amiss on the home front.  The child is “off”.  This happens every so often.  I have started to notice a pattern at certain times of the year, like holidays.  When his routines go awry, he falters somewhere.  The nice packets of expectability are missing and the conveyor belt continues but he cannot shelve the products as he expects…  Does this make sense to you?

Tootles is not really “eating”.  What he is eating is junk, for the most part.  As the parent, this is my fault, not his.  He has refused the two basic items that he used to eat – burgers and tuna sandwiches.  He will eat neither.  It is not a matter of starving him until he eats.  He has to have food with his medications for seizures.  It is not an option to say if you don’t eat it, you won’t get anything until you do.  He is not ill, nor allergic.  Is it autism or is it behavioral?  Are the two separable?  Is he manipulating me?  I don’t know why.

A second issue we’re having is screaming.  This is not the scream from being frightened.  This is YELLING words at a decibel-breaking volume, two inches from my face, while playing an iPad game, playing with a toy, or watching an obsessed-upon section of one TV show over and over.  Even when I take away whatever is the subject  of the yelling, he finds another and then YELLS about that and so on.  This is an attention-seeking mechanism but as I’m with him every hour but those he spends at school, I don’t know why.

This post is not about the food and yelling issues, a recurrent theme in my household.  This post is about why.  And it is about the answer,“I don’t know why.”  My son cannot tell me what’s wrong.  In fact, sometimes, when he is “off”, that is the first sign that a meltdown is brewing.

When he was younger, he would melt down without warning, screaming, kicking, scratching and hitting others, and this could go on for hours at a time.  As he’s gotten older, the meltdowns are less frequent, less severe and more predictable.  These days, they can start quietly and I can see them coming.  They still scare me, because I don’t know what the underlying problem is.  Whether I need to take him to the doctor.  Whether he is suffering.  Whether my response will be adequate, timely, or right or wrong.  

I am constantly in a freak out mode when the child is “off”.  That heightens to panic when he melts down because I fear he is might need emergency care for some physical problem (his dad’s appendix nearly ruptured when he was young) and if I don’t make the right choice, he could suffer.

Once I rule out physical problems, I’m still left with a highly agitated child and no idea from where the source of discontent originates.  There are 100 things that could be the source.  Even with data, I often have no way of knowing what’s happening, what the “antecedent” is and no way to soothe it other than hugs, kisses, occupational therapy tricks, quiet, and love.  

A lot of the time, he will come to me in tears, and say, “What’s wrong?”  a prompt for me to ask him.  Then, when I ask him, inevitably, the faucet comes on full force and I get no answer at all, just a steady stream of tears.  My job, once imminent danger is ruled out, is to just be there.  And while I know it serves its purpose, I often feel inadequate.

I die a little bit inside every time this happens.  I am helpless to figure it out and many, many times, I can’t and don’t.  My son has epilepsy and autism.  He cannot tell me he’s had a seizure.  He cannot tell me his environment is overstimulating.  He cannot express himself.  Even if he could, he may not understand what’s happened himself.  Sometimes, even I break down and don’t know why.

We are headed toward a birthday at the end of May.  It seems every year within a month of his birthday, he becomes dysregulated.  He regresses a bit.  His listening and learning go backward.

Then, the birthday comes and goes, like Christmas, and he’s back on track, excelling and surpasses his prior heights.  Last year, we had trouble with potty training right up to the week of his birthday.  After?  He decided he was trained and we had smooth sailing (until Christmas… patterns).

I don’t know why we have to go through this every year.  Is it just the lack of routine? Whatever the reason, I just hold and love, knowing tomorrow will be a better day.  And if it’s not, then perhaps, the day after, or maybe the day after that…


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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21 Responses to Don’t Know Why.

  1. kcunning says:

    A few thoughts:

    Even normal children go through periods of cognitive dissonance. It’s a time when their brain is between stages, and it’s an uncomfortable time for them. Many children get through it in a few days, but when a child’s wiring is different, it might take a bit longer.

    Take the slow buildup as a good sign: he’s coping with these changes better. Rather than melt down right away, he’s doing the best he can to deal. Yes, the meltdown comes, but one day it might fade altogether.

    Jake, at 11, still has these slow build-ups, and they’re usually timed around great upheavals. He stops eating, he starts talking back more, he stims, his vocab goes into the crapper. There’s usually an epic crying fit (or a shouting match) that serves as the apex. Once the upheaval is done, everything goes back to the way it was, and he makes up for lost time.

    • solodialogue says:

      Cognitive dissonance – wow, that’s a heavy concept but fitting to T is this way – he holds certain fears that he has recently brought up with this bout of yelling and refusing to eat. They are classic “T fears” of tunnels and riding Children’s trains. He may recognize that these fears are unfounded and is trying to work his way through them as they are dwelled upon daily, thus – cognitive dissonance…

      Jake sounds like such an older version of Toots – those behaviors are identical. It’s strange, isn’t it how it builds up, blows like a volcano and then settles back down… Strangely, I’m relying a bit on the pattern and I don’t know if that is a good thing or not.

  2. Mom2MissK says:

    Ahhh… I love that Norah Jones song. As soon as I saw the title of your post, it popped into my head.

    I feel for you here, Karen. It’s one of our big struggles too — especially the food part. And the food/possibility of illness/epilepsy/autism thing together. Don’t even get me started.

    I did have one thought for you to look into… have you had T allergy tested? April/May is a BAD time of year for environmental allergies and it’s possible that T has some sobtle symptoms that are putting him off. Even congestion may not show up as a runny nose — he could just have post-nasal drip that is irritating his throat and ending up in his tummy (making eating unpleasant). It’s worth considering. And even if you’d prefer to not have him tested, you could try giving hime some children’s Zyrtec and see if that helps.

    I’m sorry things are upset for you right now and I hope it evens out soon! Hugs!

    • solodialogue says:

      I love that song too. Too bad I don’t have Norah’s voice to go with it!

      I never even thought about his allergies and Spring. He does already (year-round due to asthma) take a daily dose of Zyrtec but I wonder if that’s enough. Good point and thanks for your support.

  3. “I just hold and love, knowing tomorrow will be a better day. And if it’s not, then perhaps, the day after, or maybe the day after that…” – YES! I know what you mean. The hard days (weeks) are awful but there is usually a good day (or week) up ahead. Hang in there. xoxo

  4. Lisa says:

    As you know, Tate just had a birthday. He has a regularly scheduled meltdown period every year after his. I guess, like all transitions, the transition from one number to another is too much to handle for him. Last Friday was awful. It was the kind of day where I felt completely devoid of any coping mechanisms of my own. He couldn’t tell me the problem, and I couldn’t fix it. I was crushed, deflated. He’s still “off”, and if history serves me well, we are due for one more mega-melt….and then he’ll be on his way. I’m hanging on for dear life in the process.

    I am with you. I am listening. I wish we could make it better. Hugs, for you and Tootles. This is one unpredictable roller coaster we are riding!

    • solodialogue says:

      Roller coaster TOTALLY describes it! Hugs back to you for that Friday and the clouds you see headed your way. We have to just look ahead – past those storms while we hold on to each other for understanding.

  5. utkallie says:

    I’m so sorry you all are going through this right now. We’ve been having this same type of conversation in our house the past couple days. Every few weeks it seems like Cam hits a rough patch with no explanations.

    Even though all of it really stinks, it is great how in tune you are to him. You are such a good mama.

    • solodialogue says:

      Often, it just remains a mystery. I can tell you that, even though it is difficult, it’s easier as they get older and learns ways of expressing and communicating but they are still just little and, yeah, it stinks. Thanks for the kind words. It’s nice to have each other for support. 🙂

  6. Kelly Hafer says:

    You are so patient and such a good Momma. This must break your heart – this helplessness. For me, too, this is one of the hardest pieces of the puzzle to deal with. We’re moms. It’s our JOB to fix what’s wrong, dry tears, and pick up the pieces. We pat them on the butts and then send them on their way happy, grubby little men. Except we often can’t. I have no words of wisdom, just a big ol’ hug for you and Tootles. ((HUGS))

    • solodialogue says:

      Thanks Kell! I’ll take those hugs and raise you triple HUGS – cuz you have three (okay – Alex is a big girl but she’s still your baby and anyway, shhh- I have to give a little extra to Ted!) 🙂

  7. I hear you. I have Post Traumatic Stress Syndrome from the earlier years. All three of my boys NEVER napped, fought constantly, and had tantrums. It was very challenging. Thank you for sharing this aspect of your journey. Big HUGS!

  8. Lizbeth says:

    We go through cycles as well. It can be anything but I’ve narrowed it down to routine changes, the general time of year, sickness, etc. I swear, my husband can’t make a pizza on his own—I’m going to have to do the express version. YOU ARE NOT INADEQUATE. End of story. You are exactly what he needs, when he needs it. Sometimes there is no explanation. It just is. Those are the ones that suck the worst. He will come around in his own time. Hugs.

    • solodialogue says:

      Should I be saying how “I” can make a pizza on my own? Cuz, well, you know, except maybe the frozen kind, and yet, do you remember my story about burning microwave popcorn? No? Never mind. 😉 And thank you for yelling the self-esteem issue out of me. Sometimes I need that! Oh yes – I love those hugs- back at ya, girlfriend!

  9. Why is the question I most like to ask and the one that comes with the least satisfactory answers. Which means that our jobs include statistician and detective. Mom2MissK’s thought about seasonal allergies is great detective work. My son has an on and off runny nose now and there are changes in his sleep pattern and some behaviours that are present at the same time. Could it be allergies or could it be the longer days? Could they not be connected at all?

    We are all doing the best we can and that means you. Why is a very tricky question to get answers to?

    • solodialogue says:

      Thanks Jim. So nice to see you here! Yes, yes, always the detectives aren’t we? I like the suggestion about the longer days. I think you may be onto something else there… 🙂

  10. eof737 says:

    I dont have answers but I send you both calming thoughts and hugs…. We all have ups and downs and hopefully this too shall pass… Be strong!

  11. Broot says:

    ((hugs)) that’s all I’ve got but it’s heartfelt.

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