where wildly different is perfectly normal
We just call it Monday around here
We just call it Monday around here

We just call it Monday around here

You know what’s really awesome? Losing your shit with your  eight year old son before 8:30 am. Losing it so badly that he’s in hysterics and you are sobbing like an overwrought soap star. Losing it so badly that many loud and profane words are said after he leaves for school and you notice the ear filter for his CAPD sitting on your effing desk, where you’d remember to hand it to him in the morning, forgot because of the drama, and then get a phone call from the school that he needs it and crap, it’ll just have to bloody well wait.

There’s a special place in hell for pharmaceutical companies that manufacture ADHD medications that are available only in pill form. Medications for kids that already have an extremely difficult time focusing, for kids that likely have sensory issues that make swallowing a pill an exercise in futility. We put a man on the moon with a slide rule and less computing power than my iPhone, and you’re telling me you can’t come up with a way for these medications to be available in an easier to swallow form? Bullshit!

We’re into week 2 of A’s introduction to Intuniv, and it seems to be working. So far the only side effect has been fatigue, but that’s tolerable as it only hits in the evening and the end of daylight savings has screwed up everyone’s sleep patterns. The most improvement is supposed to come in weeks 2 and 3, and boy howdy, I’d sure like to see it! I know this will be a good fit for him, if we could just get past the issue of taking the damned pill! Last week, once he mastered taking the 1mg dose (smaller than a mini M&M), we were golden. Then came Saturday and the dose increased to 2mg. With a larger pill size (about the size of a Tic-Tac). Oh my hell. Two hours of torture on Saturday, THREE hours of misery on Sunday, and my losemyshitapalooza this morning. And it gets better. Next week he increases to 3mg, which (for the intro pack from the doctor) is two pills, a 1mg and a 2mg. I’m nearly hysterical even thinking about it.

This morning as he walked out the door (after an hour of trying), he chewed it and freaked the hell out (oh my god I chewed it I’m going to get sick I’m going to die please call the doctor I don’t want to get sick). So now I get to call the doctor and find out how bad it is that he did that. From what I can tell from the literature, it just means the extended release medication will be released too quickly into his bloodstream.

This is all getting tiresome, as you might imagine. Eight years. Eight years of fighting for him, helping him, trying to find the answers to help him, experts and doctors and meetings and consultations and medications and seminars and parenting classes and books and websites and…and I feel we’re getting nowhere. When does he improve? When are we no longer fighting his ADHD, his digestion, his sensory issues…when does he get to use and appreciate how gifted he is? When does he no longer have to fight against what holds him back and just soar?

When does it get easier?

I know parenting isn’t easy, I get that. I expected that. But this… And I know how well we have it, too! My kid isn’t disabled, he’s healthy, he’s happy, he’s awesome. We can (for the most part) afford the treatments he needs. But everything, and I mean everything, is a struggle for him. And that saddens me, because I feel I’ve failed him. I’ve failed in finding the “magic bullet” that would help him. I’m envious of other parents whose kids have improved, and feel guilty that I feel that way. I still feel there’s an answer out there for him, I’m just tired of searching for it.

I need to get his ear filter to him. Ten bucks says his first response isn’t “thanks mom!” but “it’s about time!” Sigh.

14 Comments

  1. Theresa

    Woman, if you say that you feel like you have failed that wonderful boy again I am going to get on plane and come smack you silly. You are fighting the battle with him and you’re doing he best any mother could do. Now dust yourself off and pat yourself on the back!

    As for the pill and the ones to come – bribery. Don’t let him drink pop(soda, coke, whatever it’s called there)? Let him have it when he takes the pills – no caffeine of course. Promise him a trip to the dollar store or the ice cream place if he can go one week without making it such a struggle. Offer him cold, hard cash if that’s what it takes. Amazing what a kid can find a way to do to get what they want.

  2. Jen! It will all be okay! (Quite frankly it’s nice to hear that I’m not the only one to lose their shit in the mornings trying to get the kids GOING!)

    It’s hard, parenting is not for the faint of heart. But lemme just say. Stop. Look at your son and think of the progress that he has made instead of what progress he still has to make. These are the kids that grow up and become amazing adults because their take on the world is different. They don’t just think out of the box, they live out of the box. The path is just a lot bumpier and seemingly a hell of a lot longer than “normal” kids. (BTW there really are no normal kids– just kids all along a spectrum of different.)

    ALSO If the kids doc knows he has these sensory issues can’t he just Rx 3- 1mg pills a day? It sounds like he can manage the 1 mg pill okay, then maybe move up to the bigger pill when there isn’t other extraneous noise going on in his life?

    You’ve not failed him, or yourself. You’re doing the absolutely best job you can. You can only do the best YOU can do, and it actually is enough.

    (Also maybe giving him a cup of coffee would be helpful! Caffeine actually helps many kids with ADHD– I’m sure you’ve already tried this but thought I’d mention it.)

  3. I wish I had some ideas for the pill situation, but I’m afraid anything I’ve thought of won’t work with A’s food restrictions. 🙁 I was going to suggest maybe putting the pill in a spoonful of pudding and just have him swallow it down, but can he even have pudding?

    Is it the gag reflex that gets him? When my son had to take pills at that age, I would have him put it in his mouth, take a sip of water, then just put his head back, so the pill literally sank to the back of his throat. He would put his head back up, swallow quickly, and down it would go. But, if A has a strong gag reflex, that probably wouldn’t work for him.

    I wish I had some better ideas for you. Now, on to the rest of this post. Like those before me have already said, you are in NO way failing as a parent! Believe me, I completely understand why you feel that way in the moment (been there, done that!!)but once you step back and look at the situation from an outsiders point of view, you’ll see what an incredible mom you are. If it makes you feel any better, I lose my shit almost every morning around here. 🙁

  4. I stumbled upon a clinic for autistic children which teaches children to swallow pills. In Maryland it is Kennedy-Krieger. I’m sure there are such places near you…if you were aware that there are such things.

    This was a life saver for my son to start taking his ADHD meds. Otherwise I couldn’t get them down him either.

  5. I cried when I read this – the exhaustion you feel – is so understood. So sorry and I hope the rest of the day was better.

    Pill – I used to have a terrible time as a kid – I finally learned to do it backward and still do today. Huge drink of water first, drop pill in second, swallow it all third. That way you can’t feel it at all (well, hardly) and it doesn’t get stuck in your esophogus or on your tongue, etc.

    Just a thought. Good luck.

  6. Hugs! Have you asked your pharmacist about making a liquid form for you? Might not be possible with the release formula, but I heard about it on the news with tamiflu. I wish I had a recommendation for you, that totally sucks.

  7. A couple of suggestions from a woman who has shoved a zillion pills down her son’s throat:
    1. have you tried giving it to him with applesauce or pudding instead of swallowing it with water?
    2. have you tried cutting up pieces of bananas that are roughly the same size of the pill, and practicing?
    3. it is NOT worth the fight. wait until they make it in capsule format. E-Niner has been scarred for life (it feels like) in a pill-swallowing incident which turned BOTH his parents on him at the same time. I feel so bad for him now. But in the moment, you just feel like it’s do or die. They HAVE to take the freaking pill!!!
    4. Yes, by chewing it he got the full dose up front. no extended release. i’m sure you know by now, it’s okay.
    5. don’t beat yourself up on this. we’re here rooting you on!

  8. Pingback: Adios to Intuniv

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