More to the Multiple Myeloma Mom than just Multiple Myeloma

In this blog, I usually talk about MY stuff, about life after my cancer diagnosis two years ago.  BC (before cancer), I had always dreamed of being a mommy blogger. I was a Journalism major in college but wound up following a different career path, working in Human Resources which I (mostly) love.  Besides, when I thought about blogging, I never really knew what I had to say – until I was told, at the age of 42, that I had an incurable, though treatable, cancer of the blood called Multiple Myeloma. That got me thinking  – and writing!

For the past 18 months or so I have been chronicling my journey with Myeloma, specifically how it has affected me and my family and proclaiming myself the “Multiple Myeloma Mom”. I decided the silver lining of my diagnosis was that I had finally found my writing inspiration. This was my opportunity to help others by making them laugh, cry or feel less alone.  However what I have realized lately is that I have been hiding another facet of my life as a mom – and this one has NOTHING to do with my cancer at all. Maybe “hiding” isn’t the right word because that implies intent to conceal. This blog has been all cancer, all the time but I have a venue to share something else significant that happened in our family – and perhaps help others again.

Last fall, my husband Brian and I went to our son Jake’s third grade parent teacher conference. Like all kids, Jake isn’t perfect but he is a GOOD kid – he’s sweet, kind, smart, social and we have always left his conferences feeling filled with pride.  But this time his teacher was concerned.  Jake has never liked reading (which kills me because I LOVE to read) but now it seemed as though he was falling behind his peers. A lot of that meeting is a blur to me but what I do remember is hearing words like “formal evaluations”, “possible dyslexia” and “child study team”.   A few weeks later we met with the child study team and formulated a plan that included those evaluations to get to the bottom of what was going on.  However as the meeting was coming to a close one of the teachers made what seemed like a throwaway comment – “When I’m in the classroom, it seems like Jake can never sit still.”

Um, WHAT????

Clearly the implication was that Jake had ADHD.  As a mom, I instantly felt a rush of emotions – fear, concern, defensiveness and guilt. How had I not noticed this – I’m his mom, for crying out loud!  My second reaction was “not my son”. Not that there’s anything wrong with it (ADHD that is) but he didn’t fit the mold. Well at least the mold I had in my head.

Like many of us, I will admit I had a (misinformed) vision of kids with ADHD.  That they are bouncing off the walls with crazy amounts of energy, running around all the time like little Tazmanian devils. And my son isn’t like that.  But here’s the biggest thing I’ve learned this past year – MY kid with ADHD doesn’t look like YOUR kid with ADHD. They are all individuals and they experience this in different ways.  The assumptions I made, the labels I had put on kids with ADHD didn’t fit because it doesn’t work that way; ADHD isn’t one size fits all.

Let’s stop for a minute because some of you might not know a lot about ADHD.  According to the National Institute of Mental Health (NIMH), “Attention-deficit/hyperactivity disorder (ADHD) is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.”  There are three types of ADHD: predominantly inattentive type, predominantly hyperactive-impulsive type or a combination of both.  A friend writes a great blog about her family’s experiences with ADHD so I’m stealing this from her, as I think it’s a simple way to understand:

ADHD is a bio-neurological disorder and classified as such in the DSM-V. It is a REAL medical condition in which the synapses in the brain misfire and where the brain has difficulty processing glucose. The brain in an ADHD person is therefore always looking for a dopamine fix. 

These are all very official-sounding definitions but here’s what is most important to know.  ADHD is a legitimate condition – kids can’t just “try harder” to “behave better”.This is a REAL medical disorder.

According to Wikipedia, “people with ADHD commonly experience shame and judgment by a misinformed public that mistakes its real, medical symptoms for bad behavior, poor parenting, or ‘just not trying hard enough.’ These feelings of failure and embarrassment can prevent people with ADHD from seeking an evaluation and treatment that could help their brains function more effectively.“

I had always believed that Jake was “just” a typical 6, 7, 8-year-old boy. When I would ask him to do three things and he did none of those and instead did three other random, unrelated things, I explained it away as “that’s how boys are”.   But once I started to read, talk to others and learn more about ADHD I knew, without a doubt, that they were describing my son.   While he didn’t display behaviors I had always associated with ADHD – he wasn’t constantly moving in big, “hyperactive” ways – I realized he was actually always moving but in really small ways, chewing on a straw or pulling on his shirt sleeves.

Jake supposedly has a “mild case” of ADHD but he has many characteristics that fit the bill.  He has historically had difficulty maintaining focus, both in school and in sports, sometimes had a hard time coping when things didn’t go as he wanted and he fidgeted…a lot.

According to Attitude Magazine “those with the condition don’t have a shortage of attention. They pay too much attention to everything. Most people with unmedicated ADHD have four or five things going on in their minds at once. The hallmark of the ADHD nervous system is not attention deficit, but inconsistent attention.”

Once I understood that he had ADHD, this meant we needed a plan. After many tears (mine) as well as a lot of research and discussion with experts (including our pediatrician and school counselors), the decision my husband and I made was to do a medicine trial for Jake. What does that mean?  We would give Jake one of the many great medicine options for treating ADHD and see how it affected him.

This was not an easy decision AT ALL.  I don’t want my child on medicine. I also don’t want my son to have a condition for which he NEEDS medicine. But he does have one – and we believed that the right choice for him -and our family – was to give the medicine a try and make a decision based on facts, evidence and our experiences, not out of fear or assumptions.

Let’s be clear – EVERYONE  has opinions on this topic. When we first mentioned Jake’s ADHD to friends, many suggested (with the best of intentions) that we do anything besides offer medicine. “Get him a trampoline” or “make him run around the house in the morning before school”.  By the way, these are all great ideas for a kid with ADHD.  But we did not believe that behavioral changes alone were going to be enough.

All medicines have potential side effects – and the medicines for ADHD are no exception.  Most often they include loss of appetite, trouble sleeping, and moodiness — and it may take some trial and error to find the right prescription and dosage for your child. That said, I don’t think drugs are the enemy. I work for a pharmaceutical company (Johnson & Johnson) that has countless people and financial resources dedicated to finding cures and treatments for patients. I myself take medicine that is LITERALLY keeping me alive.  So I started from the position that if medicine could help Jake, it had to be an option we considered.  A common pro-medication argument  that really resonated for us was “if you’re child had diabetes, would you deny them insulin?” Or “if your child had a problem with their vision, would let you get them glasses?”   We felt it was a lot to ask Jake to be more focused on his own. Based on what we knew about ADHD, we wanted Jake to have as few barriers as possible in reaching his potential – whatever that is supposed to be.

We started Jake on his medicine on a weekend and felt we noticed a difference – but the true test would come when he needed to concentrate at school, especially in subjects he didn’t like as much.  This is often how ADHD is caught – kids are able to mask it until the work gets harder and / or they become less interested.  So I held my breath to see how it would go. And literally the FIRST DAY, his teacher emailed me and said there was a DRASTIC difference in his behavior. He was a lot more focused, but still maintained “being Jake” – which was SO important to us.  And if I may brag for a moment, I will say that his evaluations all came back glowing, his test scores have improved, he is a completely different player on his travel hockey team than he was just six months ago.  And we have beamed with pride each time we have gotten unsolicited feedback from teachers or coaches that Jake has matured, that he helps others in class without being asked  – and this from teachers who had no idea he has been struggling with.

This all came full circle for us when a letter came home from school last week congratulating Jake for being named  one of the Students of the Marking Period in his new school.  We would have been super proud of him for this no matter what, but he was being recognized for having extraordinary student character, being a positive role model and displaying great work ethic. For any kid that’s great but for a kid with ADHD – it’s incredible!

As I said, I am crazy proud of our son so I started to recently wonder why I haven’t written about this before? I have shared some pretty intimate details in this blog, including my hair loss, side effects from chemo (namely “stomach issues”) and even some of the dark, dark thoughts that plague me on a regular basis. I have been an open book and I don’t regret it at all.  So why not this?  Was I embarrassed?

I have asked myself this question many times and I know that the answer is NO.  I love my son – no matter WHAT – and I am so deeply proud of him.

That said, despite an increase in ADHD diagnoses in recent years and some pretty famous people having it (such as Justin Timberlake, Will Smith, Terry Bradshaw, Michael Phelps and Simone Biles), there is still (sadly) a stigma associated with this condition.  I didn’t want Jake to be labeled in any way. But he can’t control his ADHD diagnosis any more than I can control my cancer diagnosis. And if someone judges Jake for having ADHD, that’s on them and not him.

I think I might also have hesitated because this really isn’t my story to tell – it’s Jake’s.  But I decided that, similar to sharing my journey with cancer, perhaps opening up about our situation and ultimate decision might help others.   I realize that our choice is individual to us – please know that I’m not writing to convince people to put their child on medicine. That is a very personal decision for each family and one I know is never taken lightly, no matter what side of this argument you land on.

ADHD doesn’t have to define Jake, anymore than my cancer diagnosis should define me. But while it doesn’t have to define us, it definitely is shaping who we are.  I hate that he and I have something like this in common. No, I don’t have ADHD but my body has also “betrayed” me. We both have something that we will be dealing with for the rest of our lives. And I’m so proud of the way that Jake has faced this head on and persevered.   Life is messy and parenting isn’t easy – whether it’s cancer, ADHD or the multitude of other challenges we each face as parents every day.  The good news is that it’s worth it.

#ADHDgameon