Saturday, October 27, 2012

Brand Name vs Generic -- Lessons Learned

The day started off normal enough. Bear was wild, Stitch was into everything, and I was gritting my teeth as I sorted through our bottles of medicine so I could give Bear his meds.

Then I stopped dead.

"Shit!" I muttered under my breath. I don't normally swear in my blog and I definitely don't normally swear in front of my kids, but realizing that you've forgotten to refill your child's ADHD meds is one of those times that brings out the worst in you. And for the record, no one heard me over Bear. No one can hear anything over Bear in the morning. Hence the profanity.

OK, no problem, I thought to myself. Bear and I are on the exact same dosage of the exact same medication, and I wasn't out of mine. Surely I could spare one in order for my boy to be able to get through his day. Now, let me be clear -- I don't go around giving people my meds. And I'm not one of those parents who says "Oh, we're out of children's Advil so I'll just give him a regular one...should be the same, right?" Again...we are on the EXACT same dosage of the EXACT same medication. The only difference is that his doctor specified no substitutions and mine didn't, so he's on the brand name drug and I'm on the generic drug. Theoretically, these drugs are identical and fully interchangeable.

Did you catch the key word in that sentence? Theoretically…

Well, they might be theoretically identical, but I can tell you beyond a shadow of a doubt that there is a huge difference between the two. My understanding in researching it is that while the active drug is identical, the time release mechanism is different, and that’s where the problems lie. (Note: From what I’ve read, this is the situation in Canada. My understanding is that both the active drug and the time release mechanism are identical in the US.)

What followed was one of the worst days that Bear has had in months…and months…and months. Here are a few highlights: punched someone in the stomach at school, spontaneous tears on and off all day for no reason (yes, there was a reason, but you know what I mean), total meltdown because there was no milk for his chocolate milk, aggression and defiance like I haven’t seen in ages. The chocolate milk was such an issue that despite the fact that The ODD Dad and I were both home, I had to call my dad and ask him to go buy us some milk. Bear was so upset over there not being any milk that he was violent, but he was violent enough that neither of us could leave to go get the milk – and no amount of explaining this was sinking in. By the end of the night I was fighting tears and emotionally exhausted, which is something that hasn’t happened in a long time.

So, what did we learn from this experience? Well, first off, I’ll be asking my doctor to switch me to the brand name drug, which was a valuable lesson. The unwelcome lesson was that Bear’s meds work so well that we’ve been lulled into a false sense of security about how well he’s doing. I sometimes feel as if a huge weight has been lifted off our shoulders and as if it’s going to be relatively smooth sailing from here on in. Then a day like this comes along, and I realize just how severe our poor little guy’s problems still are. Right now, rather than feeling good about how well his meds work (and yes, I’m very grateful for them), I feel as if I’m waiting for the proverbial “other shoe” to drop – the day his meds stop working.

Sometimes ignorance really is bliss.


Monday, October 15, 2012

8 Tips for Surviving your Child’s ADHD without Losing your Mind or your Sense of Humour

This week is ADHD Awareness Week, which seems an appropriate time to share my thoughts on surviving your child's ADHD. Granted, Bear is only 7 and we have a long way to go, but I think these tips can help no matter where you are in the journey. (For the record, I started this post days ago, but my own ADHD kind of got in the way and I ended up doing 23 other things instead.)

If you have a child with ADHD, then you know that there are days where you would not only happily sell your child to the highest bidder but might even be enticed to giving them away for free.

When Bear was first diagnosed, it was a relief. This wasn’t our fault. We weren’t bad parents. We weren’t to blame. There was something bigger than us at work here, and now we had to figure out what to do about it.

My instinct has always been to approach things with a sense of humour. If I can’t make it go away, I may as well have a little fun with it. It’s how I cope. Now that’s not to say I don’t allow myself to wallow every now and then or that I don’t take things seriously. I do, but my slightly warped sense of humour allows me to find the funny in some of the stuff we deal with. Thank God, cause we’ve dealt with a lot and while things are going really well right now, I know we have a lot of new challenges ahead of us.

So, how do you survive in the face of your child’s ADHD? 

1) Allow yourself to grieve

If you haven’t already done so, allow yourself to grieve. What are you grieving? The loss of the normal life you thought you’d have. The loss of the easy life that other people have with their kids. Your life will be full of challenges that other parents don’t have to face, and it’s OK to be upset about that. You and your child will probably face some tough times, and it’s OK to be upset about that too. Your child is full of potential, but there are obstacles that they will have to face to reach it. Life for us is different. My son didn’t set foot in a grocery store for probably about three years. Now he can come in if we’re just running in for a few things, but that’s about the extent of his patience and his attention span. And that’s with medication! That said, I can remember the first time I took him into Walmart after starting his meds. I would never have brought him with me, except we had to buy a present for the birthday party he was on his way to. We chose a toy and when we got to the front of the store, there was a long line-up at every cash. I wanted to cry. I nearly put the stuff down and left, but we were already running late so I couldn’t. So we got in line, and there he stood. And he waited. And he stood. And he waited. And he talked to me. And he asked if he could go look at something “just there.” And then he came back and stood with me again. And I wanted to cry again, but this time it was tears of joy because my son was able to function in a store for the first time in his life. 

Whatever you do, don’t let anyone tell you to get over it, it’s only ADHD. It’s not only ADHD. It’s ADHD, and only someone who doesn’t know anything about it will tell you it’s “only ADHD.” Is it life threatening? No, not in the way cancer is. But is it life altering? Yes, it certainly can be. Now, keep in mind that ADHD, like everything else, exists on a continuum. Some people have mild ADHD and will find their own ways to cope, but others, like my son, have severe ADHD that affects every single aspect of their lives. Studies have shown that 1/3 of kids with ADHD either drop out of high school or delay graduation. They also shown that anywhere between 25% and 40% of the prison population worldwide have ADHD. Given the fact that ADHD causes impulse control issues, anger issues, learning issues, social issues, these statistics shouldn't surprise us. So go on...I dare you to tell me that it’s “only ADHD.”

2) Let go of the guilt and the shame

Let me be very clear about this. ADHD is a brain-based disorder that you are born with. It is not caused by bad parenting. It may not be helped by bad parenting, but it is definitely not caused by it. So you need to let go of any guilt you may be harbouring about it.

You also need to embrace the fact that ADHD is a medical condition just like any other medical condition. And like any medical condition, it often best treated by a combination of medication, diet, and therapy. Some parents feel guilty about giving their kids meds, and I totally get that given that even papers like the NY Times and the National Post have published articles in recent months about ADHD being made up. The way I look at it is that my son has a medical condition that needs medicine to treat it and to be able to fully function in his life. If he had diabetes and needed insulin, I would give it to him, right? So why is this different? Yes, there are potential side-effects of ADHD meds, but there are guaranteed side-effects of not medicating my son.

You also need to embrace the fact that whereas some people’s children have seizures, ours have behavioural problems. The issue there is that behavioural problems can stem from a disorder like ADHD or they can stem from being a brat. And to the outside world, it can be difficult to tell them apart. Dealing with a child who is having a meltdown in public or who is cursing you up and down in front of other people can be extremely stressful. So the way I see it, we have two choices. We can either completely avoid public places or we can refuse to feel embarrassed. I do a little of both. I tend not to put us in situations where I know there’s the likelihood of a meltdown, like the grocery store. But if we do happen to be somewhere and we run into a problem, I refuse to let it get the better of me. Sometimes you have to repeat something to yourself like “I’m not a bad mother” or “my son has a mental illness.” Whatever works for you.

3) Learn about ADHD so you understand why your child acts the way they do

Learning about ADHD was one of the most important things I did. Bear's behaviour made a whole lot more sense once I understood how his ADHD affects his brain. Suddenly I was able to see him as a little boy who was reacting to a world that didn’t make sense to him or that was too much for him to process rather than an angry child who was doing his best to drive me nuts. Because doesn’t it just feel that way sometimes? I realized that his meltdowns were more of a cry for help than anything, and understanding that he couldn’t control his behaviour helped me to be more patient with him. That’s not to say there aren’t consequences for behaviour or that he isn’t held accountable, because he is, but I no longer take it personally.

It also helped me to let go of the embarrassment I felt about his behaviour. Because let’s face it, having a child with ADHD, especially if they have another accompanying condition, can be downright embarrassing.

You know what one of the major results was of our understanding our son’s ADHD? The yelling stopped. The atmosphere in our house changed. Because when you think your child is being deliberately disrespectful or purposely ignoring your directions, you tend to get mad. It’s normal. And when it happens day after day after day after day, you might start to lose your temper. I honestly didn’t even know I had a temper until we had kids -- or Bear, to be more specific. I used to be so proud of the fact that nothing rattled me. Things just rolled off my back. Then we had Bear, and soon I was screaming like a banshee. At bedtime TheODDDad used to go around and close the windows so that no one could hear me yelling. Same thing at bath time. There was never, ever, anything relaxing or even enjoyable about bath time.

So, here's a little ADHD 101 for those of you who are new to this or haven't had a chance to read up on it yet.

Imaging studies (so MRIs, and things like that) have proven that the brains of people with ADHD don’t work the same way that the “normal” brain works ("neurotypical" is the correct term, but I still like "normal"). The area in question is the frontal lobe, which regulates our ability to control emotions and impulse. As the clinical psychologist who first diagnosed our son explained, children with ADHD tend to be about 2-3 years behind their friends emotionally. So that means that my 6.5 year old actually has the emotional maturity of a 3.5 year old. But what does that mean, exactly? Picture a 3.5 year old who’s getting frustrated because things aren’t going his way. How does he react? Well, maybe he’s at a point where he can work through it sometimes. But not all the time. Maybe he still throws a tantrum. Maybe he gets aggressive. And that’s to be expected, because he’s still barely more than a toddler and he hasn’t yet learned to regulate his emotions. But take a 6.5 year old exhibiting the same behaviour, and you have a problem.

Children with ADHD have problems in school and in social settings. They have poor impulse control, leading them to act inappropriately and often causing them to lash out physically. They often have trouble making/keeping friends, and one reason is they often have difficulty reading social cues (facial expressions, tone of voice, etc). One expert likened it to living your life always communicating through email. You know how many misunderstandings arise from email! The emoticon was created just for that! If you think this sounds a lot like high-functioning autism or Aspergers, you’d be right. There are so many similarities in behaviour that a diagnosis of autism needs to be ruled out for a proper diagnosis of ADHD. Not only that, they often go hand-in-hand, so a child might have both autism and ADHD.

You know what else kids with ADHD have? A Teflon brain. At least that’s how it was explained to me. Nothing sticks. It is the classic “in one ear, out the other” situation. One of the main areas affected by ADHD is called working memory. Working memory is where we store information in the short term in order to use it. It’s how we remember to do things. So the “I told you 10 times to set the table!!!!” scenario where they then look at you as if it’s the first time they’re hearing this? That’s because it really is kind of like the first time they’re hearing it because they’ve already forgotten the first 10.

Working memory is also what helps us with the use of time and time management, which is why people with ADHD are often late for appointments and deadlines and ill-prepared for upcoming activities. So the “You’ve known about this assignment for three weeks and you’re just starting it the night before it’s due!?” argument, to which they usually answer “Well…I forgot.”? That’s why it happens!

So when you start to recognize why your child does – or doesn’t do – the things he or she does, it starts to make more sense. And rather than getting mad and thinking your child is just lazy or disorganized, you can take a step back and see it as a symptom of the ADHD. And that’s liberating. How much nicer is it to be able to say “Wow…he really struggles with time management. We’ll have to work with him on that and help him put some strategies in place that will work for him” as opposed to “I just don’t understand him. He doesn’t take school seriously at all. He’s incredibly lazy, never gets his work done on time, always forgets his books at school, and it doesn’t matter how many times I remind him!” One is a helpful thought, and one places blame where, quite frankly, it doesn’t belong. 

The same thing applies to all the disorders that can go hand-in-hand with ADHD. In our case, it’s ODD, anxiety, and SPD. If you didn’t already know this, ADHD is very often accompanied by other disorders, whether it’s ODD, anxiety, depression, bi-polar, autism…and the list goes on. Bear's conditions, especially the ODD, result in extremely hostile, defiant, aggressive, and sometimes even violent behaviour. When he’s throwing things at my head and screaming how much he hates me, it’s helpful to be able to remember that this is his illness speaking. There is normally something that has set him off and he’s reacting in the only way he knows how, basically because his coping skills didn’t develop any further. 

4) Try to find the good

I realized early one that some of the very behaviours that drive me nuts are also the ones that make my Bear so much fun. Bear feels everything “big,” so the highs are really high and the lows are really low. That can drive you nuts, when every little molehill becomes an insurmountable mountain that requires screaming and yelling and tears. Mostly his, sometimes mine. But that emotional impulsivity is also what drives him to run through a room calling out “I love you, Mommy!!!” as he barrels past. He’s liable to just about knock me over with a hug at any given moment – when he isn’t trying to throw something at me.

5) Do things differently

You may also need to learn to do things differently. As parents we tend to get locked into a certain way of doing things, and then we get upset when our kids can’t fit into that rut. For example, we tried going to the Santa Claus parade a few years in a row, and each year it was hellish. Everyone knows that you’re supposed stand there for ½ hour and wait patiently for the parade to come. Then you’re supposed to stand there and ooo and aaaaahhhh while all the floats and marching bands go by. I’m not sure if you’ve noticed, but kids with ADHD aren’t really all that good at standing. Or waiting. And they’re especially not good at doing both at the same time. But think about it…do you really have to stand in one place to watch a parade? Granted, you have to stake out a good spot when you’re at the Toronto Santa Claus parade, but that really isn’t the case where we live. So why not plan to walk the parade route? It’s a heck of a lot easier than fighting with your kids to stay in one place.

6) Look at yourself and look at your child’s other parent – who has the ADHD?

No one knows what actually causes ADHD, but they do know that there is an extremely strong genetic component. What this means is that if a child has ADHD, there’s a good chance that one of the parents has it as well. So, which one of you is it? In our case, it’s actually both of us. Why is this important to know? Because it’s entirely possible that your ADHD symptoms are making it even harder for your child to manage theirs. Say one of your main problems is that you are chronically late, so you are constantly trying to rush your kids. “Turn off the TV,” you yell to your child who doesn’t deal well with transitions. He ignores you. You’re now even later, and even though you know darn well that turning off the TV is going to cause him to blow, you do it anyway because you need to get going. But now he’s melting down, you’re getting angrier because just once you wish he could do one simple thing, and it continues to escalate. So who's the problem here?

7) Look after yourself

You have to look after yourself and take help when and where it’s offered. Raising a child with ADHD is incredibly difficult. It can be both mentally and physically exhausting. Sometimes it can feel like being in an abusive relationship, especially if your child has ODD, which ours does. The divorce rate among parents with a child under the age of eight who has ADHD is twice that of regular couples. I guess after eight it goes down or they figure you’re in for the long haul, because it goes down to normal after that. Not being on the same page when it comes to how to handle your child can be devastating to a marriage. If you need it, seek help.

I’ve had to swallow my pride and ask my mother-in-law for help. My ADHD really shows up in my ability to keep a clean house and to deal with clutter. She, on the other hand, makes Molly Maid look messy. She loves to clean, and after many times of her offering, I’ve finally taken her up on her offer to help me. It’s made a huge difference for me. If someone says “tell me what I can to help,” think of something! Ask them to watch the kids so you can go to library by yourself or go get a cup of coffee with a friend. You need to look after your own mental health because without it, you won’t be able to look after your child's.

8) Find a support network

The last thing on my list is that you need to find a support network. Having a child with ADHD can be very lonely and very alienating. But you’re not alone. There are some great online websites and blogs where you can get to know other people from around the world who are in the same boat. They cry on each other’s shoulders and they applaud each others’ successes.

These are the things that have worked for me. Everyone’s different, so you have to find your own copying mechanisms, but I hope I’ve at least given you some ideas to think about.

Wednesday, October 3, 2012

Let's Give Them Something to Talk About

It's Mental Health Awareness Week in Canada, and it's a great opportunity to get the conversation going. As parents, we're so very hesitant to share with people that our children have mental health problems. But why is that?

For one thing, we're afraid that they won't understand. Fair enough, they might not. But how is not talking about it going to help change that?

Secondly, we're afraid people might judge us or our children. Another good point. But let's be honest here -- children with mental illnesses that manifest outwardly in bad behaviour simply look like brats to the outside world and we, their parents, look lazy and negligent. Ergo, we're already being judged. So once again, how is not talking about it going to help?

Third, the term "mental illness" is pretty damn scary. It calls to mind the mental institutions of old and images of sociopaths and other people society says we should be afraid of. But are those images accurate, or are we buying into the very stigma we need to fight?

The fact remains that 1 in 5 children will suffer from a mental illness at some point, and not talking about it isn't going to make it go away. What it will do, however, is continue to alienate them and the people who love them.

Ask yourself this. If 1 in 5 children has a mental illness, why do so many parents feel alone? Answer? Because nobody talks about it.

So here's what I'm proposing. What if rather than hiding from it, we talked about it? What if rather than being embarrassed about it, we educated people about it? What if rather than complaining about it, we did something about it? 

As scary as it can be,I don’t think we’re going to change the perception of mental illness unless we embrace it.

Who's with me?