I haven't written about all the ups and downs, backs and forths, various changes we've made in the J-man's medications, because, really? What's the point? I'd just be writing the same post again and again. He'll take a new medication for 5, 6, 8, maybe even 10 or 12 days. And then, he'll start refusing to take it. And he'll lose privileges. His beloved Bionicles will go into the attic. His legos will be put away. His rights to use the computer will be taken away. And those threats will work for a day or two. Until they don't work anymore.
But this latest medicaton? Oh my gosh! It's been working so unbelievably well! I didn't realize how incredible life could be until we switched to it! Life was beautiful. But it was an extended release capsule that we had to open up and break into J's food… and, well, THAT didn't go over well. Because the capsule contained these little teeney tiny beads. And the beads… well, J's super-sensitive to food textures. And whenever he decides he doesn't like a food texture, he starts freaking out. So we were putting the beads in yogurt, or ice cream, or pudding, or applesauce. And that worked. For a while. And then we had to start disguising it by putting sprinkles in with the beads. And that really worked. For a while. And that stopped working. And nothing, and I mean NOTHING, was working.
Today he simply wouldn't swallow any bite he put into his mouth. He spat it out. Today was not the day for him to refuse to take his medicine – he had an appointment scheduled with a neuropsychologist to have some testing done. He didn't know about the appointment, so I know his refusal to take the medication today wasn't just acting out to get at me. Plus, he'd told his teacher yesterday that he doesn't like his morning medicine and he's not going to take it anymore. So it's been coming.
I called the developmental pediatrician in desperation at 8am and left him a message. "What do I do? Do I cancel the appointment with the neuropsychologist that I'm paying thousands of dollars to? Or do I put a patch on him and hope that does enough to get him through the appointment? Help!" He called back at 8:30 and told me to put a patch on him. He sounded defeated. I hope he was just tired and rushed. I put a patch on J and tried to get him to calm down. The appointment was at 10am. Plenty of time for the patch to work… Turns out, the new medication works a LOT better than the patch. In comparison, the patch made it seem like he was nearly unmedicated. Sigh.
Sometimes these unmedicated (or in this case, undermedicated) days are a good thing. They give me a sanity check and remind me that the medication (the one he was SUPPOSED to take, but didn't) DOES work. It reminds me that I AM right to be medicating my child, despite how unpopular a choice it is. When I see how out of control my child is, how incapable he is of controlling even his most destructive impulses… it reminds me how desperately he needs the aid of this medication. When I see how crazed and wild he becomes without medication, I am reminded that his behavior was NOT all in my head, that I was NOT making it all up or exaggerating. I was not crazy, or just completely incapable of handling it. It was not normal behavior that I was simply intolerant of. Sometimes the unmedicated days are vindicating.
Today, however, is not one of those good days to be unmedicated. Today, J needed to be focused. Today, J needed to be optimally medicated. Today, J was not. Nevertheless, the neuropsychologist did the best that she could do, and said she'd do the rest at the next appointment in a couple of weeks. She's very flexible and she'll work within whatever limitations she can. And I got to read a good deal of a terrific book: ADHD & Me: What I Learned From Lighting Fires at the Dinner Table. Maybe I'll finish it at the next appointment.
I took the J-man to school and had a long talk with his teacher on the playground. His teacher has the advantage of having an ADHD son of her own, so she can give me a lot of her own perspective on this stuff. And we decided that if the developmental pediatrician is okay with it, we can try moving him to the short acting version of the medication. He already takes the short acting version of the medication on Mondays and Tuesdays at school in the afternoons so that he's focused for speech therapy. He doesn't mind the short acting medication because it's not little beads, it's a pill crushed into powder, so the texture doesn't bother him (…yet). The disadvantage to the short acting version is that it wears off in as little as 3 hours (versus 8 hours), so it has to be given pretty frequently, which means having the teacher give it to him at least twice a day, but she doesn't mind. And so prompted my SECOND phone call to the pediatrician for the day, making my fifth phone call to him in two days. I wish I could have frequent flyer miles with him or something. Sheesh.
And so… That's what we're doing. Switching to the short acting medication, which he'll be taking at 7:30, 11:30, and 2:30 (he'll get the 2:30 dose only on Mondays and Tuesdays… the other days I'll give him a dose when he gets home ONLY if I feel he needs it – otherwise his appetite gets suppressed too much. SIGH.). And really? If anyone thinks this is all too much for a little kid? They should take him for a day. UNmedicated. Because it may be too much for a little kid, but it's DEFINITELY too much for his mommy.
Did I mention I have a full time job in addition to being a full time mommy? Did I mention I'll be working on that full time job into the wee hours of tonight to make up for the time lost this morning trying to take care of him? Did I mention that I DESPISE that people try to suggest that mothers either work full time or they parent full time? I DO BOTH. I am home for all of my triplets' therapy appointments. I take J to ALL of his therapy appointments. I coordinate with all of the teachers, doctors, therapists, psychologists, and caregivers that function as part of J-man's team. I feed them, I shop for them, I love them, I hold them, I parent them. I do all of the things that a full time parent does. And I still have to fit a full time job in between all of that. For that matter, my wondermous husband also is a full time parent and works full time, so don't go thinking he's a slacker either, because he's not. So there.
ChezPerky 
I just wanted to tell you that you are AWESOME!
I don’t have any direct experience with ADHD, so I have nothing to offer. I just wanted to tell you how great it is to read the honesty in your blog. Not only do you write candidly about your beautiful family’s achievements, but your struggles as well. Thank you for showing that even supermoms have doubts about their abilities.
I’m so glad that you are open about being both a full-time mother and a full-time worker. It is something I definitely aspire to, but I tend to add in little qualifications like ‘if my children are healthy’ or ‘if my children can handle it’ and it’s great to know that you are making it work despite all the extra challenges.
It really is too bad J doesn’t like the bead pills. I had to take a medication in that form for months in 1st grade, and I distinctly remember being allowed to put sprinkles on anything I wanted as long as I would add in my ‘special sprinkles’ and thinking it was great fun to put sprinkles on my cereal, sandwiches, ice cream, etc. I wonder if having the control to decide what his meds are mixed with (if you have time to offer him multiple options) might help a a little bit, although I’m sure his sensitivities to texture make it much, much harder for him.
I hope your week gets easier and that you get a chance to enjoy all the holidays with your family.
Again, I say, you are THE perfect mom for the J-man!! Seriously – I am a social worker – and I’ve worked with SO many families, and so many parents give up on kiddos rather than advocating for them and continuing to try new things until they find what works. You are amazing.
You are a supermum.
I wonder if there is anything they can do with simple syrup? The twins had to take a pill and they couldn’t even do it crushed up because of the swallowing reflex issues. There’s a pharmacist in Olney who will create these syrup versions of the pills. The only problem is that once the pills are put into this liquid form, they are only good for a short period of time–a week. We saw her weekly for two years 🙂
Sounds like you’re having some real challenges. I don’t know anything I can say that will help you with them, except I’m here reading again now (got some of my shit together again, you see) if that helps.
Bea
Hey, don’t be so hard on yourself – you’re doing a wonderful job and J-man is so very lucky to have you for his mom! One day – you will sit in the audience watching him graduate from high school and then go off to college and you will be so very glad (and proud!) that you helped him work through all of his ADHD issues and become something! My husband has ADHD and although it still manifests itself in certain ways – such as in never finishing projects he starts and sometimes not in being able to focus on much of anything – he has managed to graduate from college, hold down a well paying job for many years and is now retired – very happily! So – my point is – J-man will get there – and you will be so rewarded for all you do for him now:)
Just wanted to chime in that you’re doing a great job, everything you can do. I’m glad you’ve found a medication that works so very well on J. Now I’ll hope that you can find a way to get him to take it!
I so feel for you – it is difficult being a parent to start with, the rest of the package just adds to it. And I agree with you – I am also a full time mom and job person. Why do people question that?
i too have no experience with an ADHD so i have nothing to offer except great big cyber hugs. you are such an amazing person, i know you can do it!
*big hugs*
hugs. I know you have a lot going on. It sounds to me like you’re doing an amazing job.
As a kindergarten teacher, I can definitely agree with you that medication is absolutely necessary for some children, and I praise your courage to both medicate and to talk about it.
If you haven’t already read it, The Little Monster: Growing Up with ADHD by Robert Jergen is a wonderful autobiographical look at ADHD and the text we used in the education master’s program at ASU.
Just wanted to send you some words of encouragement. You are an amazing Mom, and your children and husband are so lucky that you’re theirs!
You do so much for your kids, Karen. Of course you are a full-time mom, that would be true even without all the extra challenges thrown your way.
I hope you get some sleep soon, it sounds like you really need it.
You are doing an amazing job. Who has been making you feel guilty? Guilt – or maybe defensiveness – is oozing out of so many paragraphs here… whoever it is, they’re crazy. Period. It sounds clear that J needs to be medicated. And it’s clear that you’re on top of things, trying to find the absolute best medication and treatments for him. AND you’re parenting triplets, and let’s not even go into the dedication it took to give them exclusively breastmilk for so long… anybody who makes you feel guilty or defensive is either an asshat or just has no idea what your life is like.