The Gluten Conspiracy

Don't worry, I'm not about to go off on some tangent about how gluten is the devil and the government is covering it all up in order to subsidize wheat farmers. Gluten is the devil, however, at least when fed to my child.

See, that's what all this has come down to. Well, not all, but at least the problems Bear has been having for the last few months.

Let me back up a bit. When Bear was first diagnosed with ADHD and ODD in the spring of 2009 (is that all????), my very cautious family doctor wouldn't start him on meds until we had his heart tested. Off we trotted to the local medical lab for the test, the results of which prompted a phone call from our doctor. The tests had shown an abnormality and he was referring us to a pediatric heart specialist for further testing. We knew it would be six months to a year before we'd get into the specialist and then probably another few months before we'd get any meds sorted out, so we decided to visit a naturopath in the meantime. (For the record, Bear's heart was just fine. The machine had been calibrated for adults, not children, so his results were quite normal. Grrrrrr...)

The naturopath suggested we test Bear for heavy metals and food sensitivities, so we did. Heavy metals came back normal, but the results of the food sensitivities showed that Bear was off-the-charts sensitive (no kidding...our naturopath had never seen results like this) for eggs, gluten, soy, sunflower, and casein. We eliminated everything and fed him nothing but water and grass for three weeks. Fine...kidding...but we did eliminate all the offending foods and stuck to that diet for over two years. The difference in Bear's behaviour was night and day. His aggression and defiance nosedived (nosedove?), and his ability to concentrate increased noticeably, all within a week. This was a whole new Bear.

Every now and then over the course of the first year we would either test Bear with one of the offending foods or discover the hard way that he had eaten some of the forbidden fruit. (Don't believe me? Read A Boy, a Granola Bar, and a Suspension.) He would immediately spiral back into days of aggression and meltdowns. We learned to cancel all plans and just ride it out. After the first year, we decided to just keep on truckin' with the diet -- no more trying to reintroduce anything.

As it happened, we were at my in-laws this summer and they invited us to stay for dinner. As we hadn't planned on staying, we had nothing for Bear to eat. Oh well, we thought. We hadn't tested Bear on gluten in probably a year, so why not try him with a sandwich and see what happens. The poor little guy was in seventh heaven with his peanut butter and jam on white bread.

The next day we waited for the big kaboom...and we waited...and we waited. So we gave him some more gluten. And we waited...and waited...and...nothing. We put everything back into his diet and we didn't notice any change in his behaviour. Hallelujah!!!! Suddenly, we were back to living like a semi-normal family. Bear ate like a horse; he put on pounds and grew inches. It was amazing. And still no problems.

School started, and no problems. If anything, he was doing better than ever before. The teachers and administrators couldn't get over this "new" Bear.

And then it started. The regression. A behaviour here. A behaviour there. About a week ago it became apparent that something needed to be done, so I called the doctor to get an appointment. Knowing it would probably be a few weeks (months?) before we could get in, The ODD Dad and I discussed putting Bear back on his diet. Should we? Shouldn't we? Would it help? Would he do it?

So we did, except this time we only removed gluten. Bear had the worst reaction to gluten, so we figured we'd start there. Within five days, Bear had re-emerged from under the cloud of anger and aggression he'd been living under for weeks (months?). My Bear. My sweet Bear. My loving Bear. My funny Bear. My precious Bear. My baby Bear.

He's back.

I missed him.

Forget the Recession -- Let's Talk Regression

There's no denying that recessions are bad things, but I'm willing to bet that the "R" word that really strikes fear into the heart of the ADHD/ODD parent (or any other parent whose child has a mental illness, for that matter) is a different one.



Forget the recession...let's talk regression. Regression starts slowly, with a few long-forgotten behaviours.

"Wow!" you say to yourself or to your partner, "We haven't had to deal with that in a long time. Remember when that was an everyday occurrence?" And you smugly pat yourself on the back for having gotten your child past that stage without having smothered the little darling in the middle of the night.

And then another behaviour rears its ugly head. Or perhaps you see that first behaviour more often, and you begin to wonder what's going on.

But the behaviour is sporadic, so you kind of forget about it in between episodes. Except you don't really forget about it, because you can't. Because you're the parent of a child with a mental illness, so the question about what's going on is always in the back of your mind. Because you analyze everything your child does...always...in an attempt to figure out which therapies are working and which ones aren't. And what helps and what doesn't. And what sets your child off and what doesn't. And what they can cope with today and what they can't. The watching, the waiting, the thinking...it never ends.

And then one day you realize that life has gone back to "normal." Except it's your old normal, the one you thought you had left behind. And you realize you've been tiptoeing around your child for weeks, not knowing what's going to set off the explosion. And it feels as if everything you've done, worked on, researched, endured has been for nothing. That you're back at square one, with no idea where to go from here.

This knowledge hits you when you're already exhausted from weeks of fighting and aggression, so it hits you like a punch in the stomach. And all you want to do is curl up in bed and cry, because you feel like you just don't have the energy to start all over again. I can tell you from personal experience that there are few things more disheartening than feeling like all the progress you've made over the months or years has suddenly gone out the window.

I'm going back to bed now, where I may or may not cry. (There's a good chance I will.) But once my pity party is over, I'll get back up and start all over again. Because that's what I do. I'm the parent of a child with a mental illness. That's what we do.

Thanks, Bitchy-Comment Leaver, for the Reminder

Every now and then, I'm reminded of just how important it is to keep speaking out about children's mental health, even if it's just to friends and family.

This morning I found a bitchy comment on one of my posts, which is a first for me. I'd love to share it with you, but I deleted it by accident. I swear it was an accident! I was so flustered as the first words assaulted my eyes that I accidentally deleted it instead of opening it. Trust me, it would have been way more fun to have left it there and let you guys go to town!

In a nutshell, RochelleL (yes, she left her name) slammed me as a negligent mother who is "pleased" with herself for having "helped create a tiny terror," a kid who has "trained mommy." The reason Bear is repeating grade 1 is all my fault because, after all, what kind of mother would allow her child to miss 60+ days of school. Gee, thanks for pointing that out, RochelleL. It isn't as if I wrote an entire post to that exact subject (read Forever in Grade 1?).

It was obvious from some of RochelleL's references that she had read at least a few of my posts, and yet this was the picture of me that she had been left with. At first I was really angry, with all kinds of nasty names going through my head. Then I was hurt. How could someone come to that kind conclusion about me? Then I didn't care. I see stupid comments on other people's blogs all the time, so I guess it was just my turn. Then I giggled. If that's what she thinks about me from reading about us, what would she think if she saw us during one of Bear's public meltdowns? Can you imagine the look on her face? Priceless!

And then I was inspired. People like Rochelle are the reason why we need to keep talking and educating about children's mental illness. I'm beyond caring what Rochelle thinks about me, but I'll be damned if I'm going to let people judge my son.

For the record, TheODDDad and I frequently receive compliments from complete strangers on just how polite our "tiny terror" is in public. He says please and thank you and even says excuse me when he's walking past someone. My beautiful boy, despite his many challenges, knows how to treat people with respect. And that, Rochelle, is more than I can say about you. He has a mental illness. What's your excuse?

Love those Questions

Bear seems to have hit a stage where he's asking a lot of questions. He's always been inquisitive, but now his questions are becoming more mature.

Case in point: There's a dwarf (yes, that is the correct terminology in 2012) who works at our local grocery store. As might be expected of a 7-year-old boy, Bear is intrigued by him. This became rather embarrassing when we'd go to the grocery store because Bear's head would swivel and he'd start to giggle every time he saw him. Despite my best efforts to explain that God creates everyone differently -- some blond, some brunette, some short, some tall -- I still ended up fielding comments like "Did you see him? He's funny!"

Then came the other day, when Bear casually walked by this gentleman with little more than a glance his way.

"YES!!!" I thought to myself as we continued down the aisle. Maybe we had moved on to something more interesting. Wouldn't that be nice?

Then it came.

"Mom..." he started with that tone of voice I know so well, the one that means there's a question coming. I groaned inwardly, figuring something highly insensitive was about to voiced.

"...how does he reach things?" he asked seriously, looking around the store at shelves towering above us.

You could see the wheels turning in his sweet little head, and my heart swelled with pride at his very mature and logical question.

"Good question, Bear," I said. "I guess he uses a ladder just like we do when we can't reach something." Bear nodded thoughtfully and then took off in the direction of the toy section, his curiosity satisfied for the moment. 

Then there are times like the other day, when I'm reminded just how young he is.

"Mom..." he began as he stared out the window at the crescent moon.

"...if you were on the moon, how would you stay on?" he asked with all the seriousness of a little boy with an incredible imagination. "You'd slide right off, and then how would you get back on?"

Oh, little Bear...I love how your mind works.

I Hate McDonald's Playland

I had an hour with my thoughts yesterday afternoon as I drove Bear to his therapy appointment. Technically, I wasn't alone, but Bear was wrapped up in his movie, so I had time to think. In my mind, I wrote a great blog. I had it all worked out -- what I would write and how I would write it. (You look surprised. What, did you think the blog fairy appears and writes them for me?)

Then yesterday afternoon happened, and suddenly I had a whole new blog to share with you. Out with the old, in with the new.

For whatever reason, Bear was just wild yesterday. I knew it before we arrived at therapy and it was pretty obvious when we were there. Despite this, I caved to his whining and took him to McDonald's after our session. We always do something special after therapy, despite the fact that he loves going there. Why am I rewarding him for doing something he already enjoys doing? No clue, but at least we get to spend some one-on-one time together. Normally we go somewhere and play checkers, but yesterday he was dying for McDonald's playland.

No problem, I thought. He'd play for a while, burn off some energy, and all would be hunky-dory. AHAHAHAHAHAHAHAHA!!!!! (For the record, yes, that is maniacal laughter.) When it came time to leave, Bear went into complete ODD mode, which is something we haven't seen in a while. Despite my reasoning, threatening, and pleading, Bear remained in the play structure, knowing full well I couldn't get him in there. Of course, that isn't enough for a child with ODD. His refusal to comply with my reasoning/threatening/pleading was punctuated by name calling that reverberated around the room and by faces made at me through the plexiglass windows of the structure. Someone asked me how old he was, probably figuring I'd say 4 or 5. Her face dropped when I said 7, so I had to launch into the whole ADHD/ODD/mental health explanation.

I eventually walked away from the structure and hid myself by the door, where Bear couldn't see me. As soon as I disengaged, he snapped out of it. Now came the remorse and the panic, and he came flying around the corner with tears streaming down his face. Just as I would a toddler, I wiped the tears, gave him a snuggle, put on his shoes, helped him into his jacket and mitts, and we walked out of there hand-in-hand, chit-chatting away.

I'd love to say that was the last of that particular behaviour, but that would be a lie. The name calling came and went all the way home, as did the tears. I even had to pull off the road at one point to comfort him. It continued at Stitch's daycare where, despite knowing better, he ran around the parking lot, dodging cars. With Stitch in my arms, there wasn't a whole lot I could do except holler at him, which only egged him on. Home saw me carrying him into the house, with his arms and legs wrapped around me, as he sobbed on my shoulder.

I have no idea what the problem was yesterday, but I do know this -- it was bigger than him.

I know something else, too. We won't be going to McDonald's when Bear's having a bad day ever again. Mommy learned her lesson the hard way.

My Son, the ETL Kid

I will never, ever, ever forget the day my gynecologist informed us that we would most likely never have children of our own and that we should start considering other options. Until then, nobody had ever said the dreaded word: infertility. But let's face it, when you're in your early 30s and you've been trying for more than two years to get pregnant, you pretty much jump to that conclusion yourself.

I remember sitting there, talking to the doctor so very calmly. We discussed IVF and why it wasn't a good fit for us. We discussed further surgery and how it wouldn't likely improve our odds of getting pregnant. We discussed adoption and how that was probably our best bet. And through all this I felt TheODDDad's eyes on me, although I couldn't figure out why.

I remember smiling and thanking the doctor for all her advice on our way out. I remember holding hands with TheODDDad as we walked back to the car. I remember him opening the car door for me and helping me in. I remember laughing to myself at how gentle he was being with me despite how strong I obviously was. And I remember falling to pieces in the time it took for him to walk around the car and get in the driver's seat.

The doctor had confirmed what I had figured out a long time before -- that children were not in my future (or so I thought at the time). That I would never know the feeling of lying in bed with TheODDDad's hand on my stomach, feeling our little one move. That I would never have a child with TheODDDad's eyes or smile. And I was devastated.

Once the tears subsided, self-preservation kicked in. I'm a researcher and a writer, so I knew exactly what I needed to help me through: a book. At the book store I perused the shelves, which only served to make me angrier. It seemed that every book was a "how to" book that offered false hope to desperate women -- how to eat your way to pregnancy, how to exercise your way to pregnancy, how to meditate your way to pregnancy, how to relax your way to pregnancy. And then I found it, the book that would become my lifeline. This book validated everything I was feeling and everything I was going through. It helped me deal with my emotions and gave me tips on talking to friends and family members about what I was going through. It was written by someone who had been through this herself, and it made me realize that I wasn't alone in what I was feeling. And that is what gave me hope. Not hope that I would get pregnant, but hope that I could get through this. That I would be OK.

One of the lessons I took away from my experiences with infertility is that there is no more powerful feeling than knowing you're not alone in what you're going through. There is also no feeling so alienating as believing yourself not only to be alone in what you're going through but to be responsible for it. As parents of children with mental health issues, that's very often a place where we find ourselves, especially as we begin the journey to understanding our children. We feel alone, trapped, judged, and to blame. And those aren't good feelings.

Recently I was asked to review a book called Easy to Love but Hard to Raise. If you've noticed, I don't review products or take part in give-aways. Not normally, at any rate. But Adrienne Ehlert Bashista and Kay Marner are both writers, bloggers, and mothers like me...like us...so I was interested in reading their book. That, and I got the book for free.

What I discovered was a book full of stories from parents like me. Real parents. Real stories. Real children. Real laughter. Real tears. Real love. It's not a book that offers false hope to desperate parents -- how to feed your children to "cure" them, how to discipline your children to "cure" them, how to play with your children to "cure" them, how to work with your children to "cure" them. Rather, it's a book that validates everything I've been through and everything I see coming towards me (duck!). That tells me that I'm not alone in this. That tells me that I'm going to be OK. That we're going to be OK.

And a book like that can be a lifeline.

If you'd like your own copy of Easy to Love but Hard to Raise, leave me a comment sharing one thing that makes your child easy to love and one thing that makes them hard to raise. The winner will be drawn at random. The contest closes on November 16th. If you can't be bothered to do that, head on over to Amazon to order your own copy.

[Note: Other than the free book, which I had planned on purchasing anyway, I was in no way compensated for this blog. All opinions are my own. It takes a hell of a lot more than a $13 book to buy me, but go ahead and try.]

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.

 

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.

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?

Things That Go KABOOM!!! in the Night

Just when I think things are going smoothly, something goes kaboom. Or perhaps I should say someone goes kaboom. Specifically, Bear goes kaboom.

KABOOM!!!

These episodes come on suddenly, and we're never quite sure what causes them. We know from experience that there's always a trigger, but we also know that his out-of-control behaviour could be a reaction to something that happened hours before, something that Bear doesn't even realize bothered him.

Tonight's rage resulted in Bear putting a second hole in his door. Why? Because I said it was too late for him to go play in the backyard. Once upon a time I knew to steel myself for a meltdown when I denied a request, but those days are few and far between now. Maybe we have the meds to thank for that. Maybe it's a maturity factor. Most likely it's a combination of both.

The fact is that I used to know what was coming, and there was a certain amount of comfort in that. But now when these episodes occur, I feel as if I've been blindsided.

KABOOM!!!

Marvin the Martian wouldn't need to complain if he lived at my house.

Help from Unexpected Places

Having a child with special needs, whether physical or emotional, can be incredibly alienating. All too often since starting my blog I've heard from parents, mostly moms, who feel alone on this journey. They often have no one to talk to, no one to rely on for help and comfort, no one to laugh and cry with -- no one who understands. Friends drop away, family members judge, schools criticize, and marriages crumble. The stories are heartbreaking.

But every now and then someone comes along who reaches out to us, often unexpectedly, to tell us it's all going to be OK. Today's "reach out" moment is brought to you by Elizabeth Aquino, blogger at a moon, worn as if it had been a shell.

Just to warn you...I watched this video with tears streaming down my face.

Note: This video was shared with me by someone who has reached out her hand in friendship and support. Thank you, Kiki, for being my "help from unexpected places."

Speaking Engagement -- I Am Not a Bad Kid!!!

I'm honoured to have been asked by the Diocese of Ontario of the Anglican Church to give a presentation in Kingston, Ontario, on September 15th. Actually, I'm giving it in conjunction with my minister, the Rev. Dr. Barbara Robinson, who has been instrumental in creating a warm and inviting environment for Bear and our family at our church. She is the mother of a child like Bear, although he's an adult now, so she has the ability to look at the challenge of integrating special needs children into the church from a really interesting perspective. If you are in the area, I invite you to come join in the conversation.

Confessions of a Negligent Mother

This morning, right after dropping Bear off for his first day of school, Stitch and I headed to the doctor. Stitch is almost 2 1/2 years old, and a real little ball of happy toddler energy. Like all little boys, he loves to run and jump and climb. He's full of mischief and curiosity, the mischief usually a direct result of the curiosity. He thrives on "huggles" (half hug, half snuggle) and kisses, and falls asleep every night with my arm wrapped around his middle, his little bum tucked into my abdomen. He scrambles out of bed in the morning with a smile on his face, and that smile rarely leaves for the rest of the day. Toddler tantrums are best handled by poking him in the tummy, which normally provokes fits of giggles.

From the moment he was born, we knew Stitch was different from his big brother. As he's gotten older, we've become more and more sure about that. He just goes with the flow, without a care in the world. It's magical...

sun + sand + water = happy toddler

So why, then, did today find us at the doctor, catching up on immunizations that he should have had two years ago? Because I'm negligent? Some might say so. Because I'm stupid? Some might say so. Because I'm gullible? Some might say so. Or because I was terrified of having to watch my beautiful, bright baby boy disappear before my eyes? I'd say so.

In my real life I'm a writer, editor, and public speaker. That means I know how to research the heck out of any topic I'm interested in, and I do. Some people dream in technicolour...I dream in Google. So yes, I'm perfectly well aware that the link between autism and children's immunizations has been debunked. On the other hand, I'm also well aware of all the anecdotal evidence from parents who are certain that their child's autism is directly linked to their immunizations, specifically the MMR vaccine.

It was with great trepidation that I had Bear immunized when he was a baby, but I did. The logical side of me knew that the risks posed by not having him immunized outweighed any possible risk from the immunizations, but the emotional side of me was terrified nonetheless. I watched him like a hawk for weeks afterwards, but there were no signs of autism. I breathed a sigh of relief.

But as he started getting older, he started to exhibit more and more behavioural challenges. At 4 1/2 years old, he was finally diagnosed with ADHD and ODD. By that time he was out of control -- aggressive to the point of violence at home, unable to function at school, constantly being sent home, unable to participate in any extracurricular activities or weekend fun -- and we were overwhelmed. Stitch was a whopping two months old when Bear was diagnosed, and all my Mommy protective instincts went into overdrive for both my babies.

At that time, I felt like I was barely clinging to my sanity. Bear's violent outbursts were constant, to the point that we installed a lock on Stitch's door so that we had somewhere safe to put him, out of the line of fire. We walked around on eggshells, terrified of provoking an outburst. Would this be the one where someone got hurt? We rarely left the house as a family, and dreaded anything we couldn't get out of. The future looked bleak both for Bear and for our family, and I felt like I couldn't handle any more.

Stitch received his first round of immunizations, the ones I knew were safe, but we stopped there. The next round included the controversial MMR vaccine, and this time the emotional side of me won out. I just couldn't take that risk...I just couldn't handle any more...so I put it off...and off...and off...

Now here we are, two years later, catching up on Stitch's immunizations. Today's vaccinations included the MMR vaccine, which the logical side of my brain tells me is safe. The logical side of my brain also tells me that if the vaccine does play a part in the autism story, at least Stitch is older and his brain is considerably more developed that it would have been two years ago. The emotional side of me, however, is going to be watching him like a hawk. Forever.

Back to School and the Alphabet-Soup Parent

Tomorrow is back-to-school day for Bear, and I have a headache. No, really. I have a headache. Granted, I get a lot of headaches, but I'm pretty sure the fact that I have a knot in my stomach as well means that my headache is stress induced.

Why so stressed, you ask? Um...did you miss the part about tomorrow being the first day of school?

Going back to school can be difficult for any kid, but it is especially difficult for kids who don't deal well with change. For kids like Bear, who have conditions like ADHD, ODD, SPD, ASD, or anxiety, the first day of school (or week, or month...) can be pretty traumatic. A new classroom, a new teacher, new sounds, new smells, new people in your class, old friends not in your class, a new desk, new rules, new work, new expectations -- these things aren't sources of excitement for kids who fear change. Rather, they are a source of major stress, and stress tends to manifest outwardly in behaviour problems.

So what can parents of alphabet-soup kids (kids with ADHD, ODD, SPD, ASD, etc...) expect on the first day of school? We never know, and that's the source of our anxiety. Perhaps there will be meltdowns at home, before school. Or perhaps all will go well until we get to school, at which point the dam will burst and all that fear will come out. Or perhaps we'll get a phone call half-way through the day, asking us to come get our overwhelmed and out-of-control child. Or perhaps he'll manage to keep it together until he walks in the front door after school when, safe at last, the slightest trigger will set off a major incident. Or perhaps the first few days or weeks will go fine, lulling us into a false sense of security, until something -- that dreaded, unexpected something -- sets her off, releasing all the stress the poor little thing has been building up.

As parents of special needs children, we know something is coming...something bad...but we don't know what or when. That's why parents of alphabet-soup kids dread school starting up again. Can you blame us?

So what can other parents, teachers, family members do to help? I found some advice on Four Sea Stars that, although it refers specifically to autism, is appropriate for all our special-needs kids.

I promise to smile at you if you promise to smile at me.

To Bee or Not To Bee

As I type this, TheODDDad is outside lopping the heads of my sedum plants, just as they're starting to bloom.

Plop.

Plop.

Plop.

As the beautiful flowers fall to the ground, bees and butterflies all around the neighbourhood are crying out in distress. OK, that might be a slight exaggeration since I don't know if bees and butterflies actually have feelings, but you get my point.

Every year my sedum plants are abuzz (sorry for the pun, but I had to) with activity, and every year I pat myself on the back for supplying a safe haven for our winged friends. The fact that I don't have to do anything to the plants except, well, not dig them up, doesn't dampen my sense of pride.

This beauty was hanging out on my sedums last fall.

Then his buddies joined him...and therein lies the problem.

Then came this year.

This year I went to TheODDDad and instructed him to behead my precious flowers, the very ones I look forward to seeing every year. I know...you're asking why I would do such a crazy thing. I'm glad you asked.

Bear has always been slightly afraid of bees and other bugs that sting, but no more than the average bear. (Sorry...It must be the Kahlua I put in my coffee this morning...kidding!!!) For whatever reason, that slight fear morphed into a major problem this spring, although we have no idea why. At one point it was so bad that Bear wouldn't leave the house unless someone walked out first to check for offending bugs. If we were going somewhere in the van, he would wait inside the house while I went out and opened his door, at which point he would dash out and jump into the van.

"CLOSE THE DOOR!!!!" he'd shriek if there was the slightest pause between him jumping in and the door closing behind him.

Sometimes playing outside with his friends provided enough of a distraction to allow him to forget his fear for a few minutes, but other times he'd end up running into the house sobbing because he had seen a shadow that may or may not have belonged to a bee. The worst was when he would want to come in the house but spotted a bee (or wasp...or hornet...or other stinging/non-stinging bug that may or may not have been a stinging bug...) near the door. He'd run into the middle of the street (quiet street, thank goodness) where he'd stand, calling my name in panic. If I didn't respond, I'd find him still standing there a few minutes later, sobbing and shaking, still calling me in desperation.

"Why didn't you come when I called you?" he'd demand accusingly through his sobs. "You were ignoring me!!!!" My explanation that I hadn't heard him or had been busy with Stitch never seemed to be good enough. All he knew was that I hadn't come when he needed me. It was heartbreaking.

We did everything we could this summer to help him conquer his phobia, even resorting to a couple of sessions of hypnotherapy to see if that would work. Unfortunately, Bear was a less-than-cooperative hypnosis subject, so it didn't seem to help much. The therapist had to try to go in through the back door of Bear's subconscious, but I think it was shut as tight as the front door. Guess this shouldn't be too surprising for a kid with ODD.

Back to the sedums. We didn't plant any flowers this year so as not to make life any more difficult for Bear than it already is, but there was still the matter of the sedums. Sedums are a perennial that flower in the early fall, and the flowers last right through until October. The fact that they're just steps from both the front door and the side door means they have the potential to cause real havoc...so they must go.

I hated to have to do it because I really love watching the butterflies and the bees, but in this house it's Bears before bees.

Maybe we'll be able to welcome them back next year.

Forever in Grade 1?

There are only 10 more sleeps until Bear goes back to school, and I'm not impressed. In fact, I'm actually dreading summer being over, which is funny since the thought of Bear being home every day for two months nearly had me in tears back in June. Summer has been a real problem for us in the past because Bear stayed home with me while all his friends participated in summer programs. Bear could have done that too, but his anxiety always got the better of him. This year, however, none of the kids on the street went to camp, so he's had lots of friends to play with. Not only was he not bored and driving me nuts, but he wasn't even in the house. Bonus!

But now school is about to start, and I find I'm dreading that even more than I was dreading summer. Bear should be going into grade 2, but instead he's repeating grade 1. In many ways, it's my fault that he's having to repeat his year, although I'm trying not to allow myself to feel guilty about it. Bear missed a total of 60 days of school last year, which is absolutely insane. Each one of those missed days required a decision by me to keep him home, which is why I say it's mainly my fault. In that 60 days were two weeks where he didn't fall asleep until 4 a.m. or 5 a.m., so I kept him home. Then there was the week I kept him home to "home school" him (or was that two weeks?). Then there were the days when he was so angry and aggressive that I felt it was better for everyone if I simply kept him at home. Then there were the days where his anxiety was so intense that I couldn't bear the thought of forcing him to go to school. After all, what could one more day hurt?

It makes me sound terribly negligent, doesn't it? Keep in mind that there were also many, many, many days where I pinned him down to get him dressed, or took him to school half dressed, or carried him out to the van kicking and screaming, or carried him into the school kicking and screaming, or took Stitch into the school for safekeeping and then returned to the van with two or three teachers as back-up.

School, apparently, isn't our thing.

So when all was said and done, Bear had missed so much school that he simply wasn't ready to move on to grade 2. So what to do then? We could move him into grade 2 anyway so as not to crush his self-confidence, but then he would flounder and his self-confidence would be crushed anyway. Not exactly a great option. Or we could keep him in grade 1, which may crush his self-confidence, but the work he struggled with last year would now be easier, so that might build his self-confidence. There was really no easy answer, but TheODDDad and I went with the latter option.

The school, bless them, has put Bear in a split grade 1/2 class, where he'll be with some of his grade 2 friends but will be doing grade 1 work. My hope is that he won't even realize that he and his friends are doing different work. If all goes well, he'll end up doing grade 2 work too.

If all goes well...that's the catch. I'm not trying to be defeatist or negative, but I don't think things are going to go well. I had the opportunity to observe Bear at a occupational therapy appointment the other day (more on that another day), where he had to sit at a table and do some very simple drawing and colouring exercises for about five minutes, and it just about killed him. He managed about two minutes, but after that he left the table pretty much every minute, rolled on the floor, wandered around, and complained about how boring and stupid it was. I can pretty much predict that reading, writing, and math are going to be a lot more boring that what the OT had him do, so I'm not holding out much hope for a sudden academic breakthrough.

I wonder if there's a limit to how many times a child can repeat grade 1...

A-Shutterbugging We Will Go!!!

There's something about being at the cottage that makes me want to get out my camera. It doesn't always happen, mind you, because I tend to be chasing children rather than catching them on film. (I just showed my age by referring to "film," didn't I?)

I've been promising Bear for a long time that we would go "shutterbugging." When he was younger he used to say he wanted to be a shutterbug when he grew up, which is something I'm delighted to encourage. Anything that holds his attention and makes him feel good about himself is fine with me.

The other morning he was a little bored because his friend next door was still eating breakfast and none of us wanted to go down to the beach with him (he's still too young to hang out at the beach by himself), so I suggested we go shutterbugging together. I bought a pretty fancy camera for work a few years back, so that freed up our point-and-shoot. Bear is allowed to use it, but we've never gone out on a picture taking excursion together. The other morning seemed like a great time, although I have to admit I had an ulterior motive. While Bear was taking his pictures, I figured I might get a chance to take some good pictures of him.

Here's a sample of what I got. They're not fabulous, but I had to take them when Bear wasn't looking. He was not in the mood to be the subject of my pictures.

Taking pictures of the water.

Taking picture of the neighbour's car. 

Cottage: Where dogs are as important as children.

Trotting down the lane, camera in hand.

Checking out what his butt looks like. Trust a kid.

All in all, our first shutterbugging experience was a success. I'm sure there will be more in our future.

Tucking Summer into Bed

Tonight I tucked two happy, dirty little boys into bed. Should they have had baths before bed? Probably. Do I care? Nope.

Because tonight I tucked summer into bed. I tucked in the smell of dirt, sunshine (yes, it has a smell), water, sand, sunscreen, and chocolate ice cream. If laughter has a smell, then I smelled that too. That, my friends, is what little boys should smell like after a day at the cottage. It is the smell of happiness. It is the smell of memories being made. It is the smell of childhood.

Good to go, Daddy!



You've Come a Long Way, Baby!

I'm amazed sometimes at just how fast time flies. I know they say that time flies when you're having fun, but apparently it flies when you're not as well. It may not feel like it at the time, but suddenly that time has passed and you're not sure where it went. One day you find yourself looking back and realizing how much things have changed.

Bear is a prime example of this. Bear was first diagnosed with severe ADHD and ODD at a level rarely seen in a child his age in June 2010, so just over two years ago. Although the diagnosis merely confirmed what we already knew, it still sent us into a bit of a tailspin. How would we cope? Could we find the strength and the patience to be the parents he needed us to be? Would his life ever be normal? Would our lives ever be normal? Would he ever graduate high school? Would he end up in jail?

And then came the treatment questions. Should we medicate him? Should we medicate us? (Kidding, but it would have helped some days) Should we look into alternative treatments? If so, which ones? What should we try first, pharmaceuticals or alternative treatments? Or should we try them both at the same time?

Then came the appointments with the mental health counsellor, our family doctor, the psychiatrist, and the naturopath. The information was overwhelming, and we felt lost.

To top it all off, we had a newborn. "A lot of people with kids like Bear decide not to have another child," the clinical psychologist who first diagnosed Bear told us when we met with him to hear his verdict. This, as two-month-old Stitch snoozed peacefully in his car seat beside us. Gee...thanks.

A few weeks after Bear's initial diagnosis, we headed up to the in-laws' cottage for what was supposed to be about five or six days. TheODDDad was on parental leave for three months, so we had been looking forward to this little escape for a long time. Day one passed normally, with Bear being "Bear," which means there was a whole lot of yelling, threatening, and door slamming. Day two...same thing. Day three...same thing. And then we noticed that my father-in-law was getting a little cranky as well. Three days of Bear was wearing on him, especially once Bear started turning on my mother-in-law as well. (I should tell her to take it as a compliment -- he's meanest to the people he feels safest with.) My four-year-old telling his grandma that she's stupid did not go over well with my 70-year-old father-in-law. He held it in, but you could tell it was taking a toll. We left on day four.

Fast forward two years to the other day, and we're getting ready to head up to the cottage for a week. We've managed a week up there now that Bear's medicated, and things have gone smoothly, but I always kind of wonder if we're pushing our luck.

Suddenly the phone rings, and it's my mother-in-law.

"Laura," she says, "I've been thinking, and I don't know why you and the kids aren't staying up at the cottage for another week. TheODDDad can drive back home, go to work, and then come back and get you the following weekend."

I think my jaw just about hit the floor.

"Um...," I stammered. "Have you run this idea past Dad yet?" My mother-in-law has a tendency to make decisions and extend invitations without asking my father-in-law first, so I was expecting her typical "well...no..." when confronted.

"Of course!" she reassured me. "And he can't figure out why you didn't think of it either! It would do you and the kids a lot of good to stay up here."

So in just over two years we've gone from cutting vacations short to being invited to stay longer.

You've come a long way, Baby Bear. Momma's proud of you.

Falling Behind

I don't know about you and your children, but every now and then I tend to forget just how behind my son is in terms of his emotional development. My brain knows that kids with ADHD tend to be 2-3 years behind their peers in this area, but I guess I've just become used to his behaviour. And with nothing else to compare it to, Bear seems "normal" to me. His normal. My normal. But sometimes I am reminded that what we consider normal, well...isn't. You wouldn't think this would be a surprise after almost seven years, yet somehow, it still comes as a shock.

Take this morning, for example. Bear has two friends who live right across the street from us: a 6 1/2-year-old boy and a 10-year-old girl. These kids are very used to Bear and his behaviour, and they very rarely so much as bat an eye when he starts to get upset. The fact that they have a 3-year-old brother might help, because they're still used to temper tantrums.

This morning, as often happens on Sunday mornings, Bear and his two friends were playing downstairs. Stitch is sick and was asleep, so I had warned the kids that too much noise would find them outside. After the fifth warning (they really weren't being too loud, but I figured the more warnings, the better), I decided it was time for the two kids to go home for lunch. In all fairness, they had been here for about two hours and it really was lunchtime, so I didn't think this was going to be a big deal.

Guess what...I was wrong.

Bear promptly dropped to the floor and began to wail, tears streaming down his face. You know...like a 3-year-old. What followed was a full-blown my-heart-is-broken you've-ruined-my-life how-will-I-go-on tantrum. Because I sent his friends home for lunch. Not for the day. Just for lunch. With the understanding that they would be back as soon as they finished eating. Which they were.

And as I watched Bear's friends, one only a month younger than he is, happily trot off home without so much as a "just five-more-minutes???" it struck me that he's falling further and further behind his friends in terms of his social development.

So far it doesn't seem to be interfering with his peer relationships, as evidenced by the seven kids happily playing street hockey in front of our house (a second set of Bear's friends just came over from down the street), but it's just a matter of time.

Soon they're going to start to notice, and what then? Will he become "that" kid, the one no one wants to play with because he's "weird"?

This could get a whole lot harder before it gets better.

Contest: The Happy Mama Conference and Retreat

I've never done this before, but today I'm honoured to welcome a guest blogger. I'm a big fan of Kay's and the blogs she contributes to, so I'm happy to share this. Kay is sponsoring a contest to send one lucky mom (sorry dads...moms only!) to The Happy Mama Conference and Retreat in North Carolina this July. The conference is an amazing opportunity to spend a weekend with other moms who get what we go through on a daily basis. Not only will you hear some great speakers, but you'll get pampered as well. Notice it's a conference "and retreat"!? I have to admit that I nearly didn't share this post because I've entered the contest myself and would really like to limit the competition, but that just seemed wrong. If I don't win (and I have less of a chance now that I've told all of you about it!), I'll be saving my pennies to go next year. Because trust me, I'd be there in a second if I could!

Note: The contest closes tomorrow, so don't put it off!!!!




Take Care of Yourself in a Big Way at the Happy Mama Conference & Retreat: A weekend getaway for moms of kids with ADHD, ASD, FASD, and other brain-based disabilities 
by Kay Marner


This mama ain’t been very happy lately. In fact, my never-ending worries about my 11 year old daughter, Natalie, who has ADHD, sensory processing disorder, anxiety, and is on the fetal alcohol spectrum, have put me in a real funk. Most days, my bed starts calling my name by mid-afternoon. I’ve had zero motivation to work or do most anything else. I’ve felt like avoiding any and all social interactions. This funk has been severe enough, and lasted long enough, that I decided I had to make a conscious effort to do something about it—to take better care of myself. So, I made a few small changes in my daily routine. I started going for a short walk several days each week. I pulled my vitamin and mineral supplements out of the cupboard and recommitted to taking them daily. I gave myself permission to spend more time reading for pleasure. I’ve been scheduling a few lunches out with friends.

I firmly believe that when you’re living with the stress of raising a child with special needs, you have to make a conscious effort to take care of yourself. After all, as the saying goes, if Mama ain’t happy, ain’t nobody happy. Even small investments in your own well-being, like those I listed above, can make a difference in how well you cope with day-to-day challenges.

Yes, small is good. But big is even better! So, I’ve also pledged to do something significant. I’ve registered to attend the Happy Mama Conference & Retreat, a two day getaway especially for moms of kids with special needs.

The Happy Mama Conference & Retreat will take place July 28–29, 2012, at the Rock Barn Golf & Spa, in Conover, North Carolina. Here’s what the retreat is all about, as described on the Happy Mama website, www.if-mama-aint-happy.com:

What: A CONFERENCE that focuses on your needs as the mom to a child with a very real, but invisible, brain-based disability, like ADHD, ADD, OCD, ODD, FASD, PBD, SPD, PDD, or one of the many other overlapping conditions that make parenting your child an extra challenging situation, and a RETREAT, where we’ll provide you with wonderful food, spa opportunities, fun activities, and camaraderie with other moms who know exactly where you’re coming from.

Why: Because parenting children with invisible disabilities is an extremely stressful, isolating, and emotional job and one which can impact your health and well-being in a negative way.

The retreat, hosted by DRT Press (publisher of the book I co-edited, Easy to Love but Hard to Raise) and the website {a mom’s view of ADHD} (founded and edited by Penny Williams) and supported by a growing list of sponsors, including CHADD and the Catawba Valley Medical Center, will offer the perfect blend of education, support, and pampering.

Saturday’s speakers will cover: “Parenthood, Stress, Health, and Resiliency,” “Advocating for Your Child in School,” and “How to Be Happy: Calming Techniques for You and Your Child.” Sunday will be devoted to fun and pampering, which may include spa treatments, relaxing by the pool, gem mining, hiking, yoga, horseback riding, or kayaking.

Doesn’t that sound fabulous? I can hardly wait!

By interacting with other parents of kids with special needs via the Web, I’ve learned that support from others in my situation is the best support there is. My ADDitudeMag.com blog, “My Picture-Perfect Family,” is one avenue for those interactions. To celebrate the 4th anniversary of that blog, and in honor of the support and community we parents of kids with special needs offer to each other, I’m running a contest. I will sponsor one lucky mom’s registration, travel and lodging expenses (not to exceed $1000, some meals included, some meals, activities and miscellaneous costs at winner’s expense) to attend the Happy Mama Conference & Retreat. For more information, and to enter the contest, click here. The contest ends at 5:00 pm EST on May 30.

If you are interested in attending whether you win this contest or not, please don’t hesitate to register now. Registration is just $129 until July 1. If you are “in the business” of ADHD, FASD, ASD, or other brain-based disorders and wish to become a retreat sponsor, email happymamaretreat@gmail.com for their sponsorship package.

In the meantime, take a few steps, big or small, to take better care of yourself. You work so hard to bring happiness to your special child. You deserve to be happy too.


*****

Kay Marner, a freelance writer and editor, is the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories (DRT Press, 2012). Marner contributes regularly to ADDitude magazine, and her ADHD parenting blog, “My Picture-Perfect Family,” appears on ADDitudeMag.com. You can reach her at kay@kaymarner.com

Pretty Things Can Wait

Every Mother's Day for the past few years my father has sent flowers to the three women in his life: my mom, my sister, and me. That might sound a little strange to you, but I think it's beautiful. Mom's flowers are to thank her for the great job she did raising us. (Hey...we turned out well!) My sister and I receive flowers to thank us for being such good mothers to our children, Dad's grandchildren. My sister's children are 15 and 18, so the hard work is behind her. It's now up to them to take the lessons she's taught them and to find their places in the world.They're both really good kids, so she can rest easy that she's done her job well. I, on the other hand, am still in the midst of the formative years, so the pressure is on.

My sister's flowers have a place of honour in her dining room, on a lovely buffet with a pretty white runner. Mine are hidden in my room, on top of my dresser. At least they are now that I've moved the toys, books, diaper cream, and assorted other child-related things off "my" dresser to make some room for them. And even then, they still only got a corner.

As I stood in front of my dresser tonight I was hit by a pang of jealousy that I can't display my flowers like my sister can. For a second or two I was actually consumed with resentment of the fact that all my pretty things have had to be packed away, safe from little hands. The two headless figurines now hidden behind my flowers are a testament to lessons learned the hard way. But as I stared around my disaster of a bedroom, with its dirty diapers on the bed, toys strewn about the floor and out-grown clothes piled in the corner, the absurdity of it all struck me.

For I am a mother -- Mom, Mommy, Momma -- to two adorable monkeys. They are the reason for both receiving the flowers and for not being able to display the flowers. Without them and their dirty little faces, their pudgy little hands, their silly little giggles, and their soft little kisses, there would be no flowers. There would be no me...for that is who I am. That is who I was made to be. Mom...Mommy...Momma to these two precious little boys.

Pretty things can wait.

Mommy Still Needs her Kisses

As I buckled him into his booster seat, his sweet face beckoned me to kiss it. Unable to resist, I placed a gentle kiss on one soft little cheek. He frowned a tiny bit, but I caught a glint of smile in his eyes. Knowing I need to take advantage of these moments when I get them, I cupped his face in my hands, looked deep into his eyes, and said "I love you so much, Bear."

"Yay!" he responded, which is our "thing." "Yay!" I answered back, burying my face in his soft cheek again and smothering him with kisses.

"Oh, Bear," I said. "Someday you're going to be big and you're not going to want me to give you kisses."

"Yes I will, Mommy!" he protested. "At least I think I will. I don't know. Maybe."

Oh, my baby Bear...please don't grow up too soon. Mommy still needs her kisses.

What's Your Message?

I'm honoured to have been asked to address a group of women this week who many or may not know anything about children's mental illness. In case you weren't aware, May 6-12, 2012 is Children's Mental Health Week, so the timing couldn't be more perfect.

My goal is to share a bit of what it's like to be the parent of a child with a mental health challenge, but I'd love to have the chance to share a bit about what you think, too. With that said, here are a few questions for you. I know my answers to these questions, but I'd love to hear what you think as well.

So, here goes.

1) What message do you feel needs to get out there? What do you want people to know?

 2) When your child is acting up in public, what is the most helpful thing someone can do? (ignore? smile reassuringly? offer help?)

 3) What can friends/family do to help?

I've asked these questions over on TheODDMom Facebook page as well, so feel free to go check out what's going on over there as well. If you haven't joined us yet, you'll find the link to the right of this blog.

Thanks, everyone. I look forward to hearing from all of you.
 

My Boy -- A Man of His Word

"I'm not going to school!!!!" he shrieked at me this morning. This after he had snuggled with me and smothered me with kisses.

"You're the best mommy ever!" he had informed me.

But then it came time to get ready for school, and things changed. He changed.

"If you make me go to school, I'm not going to listen!!!" he warned me. Ya, ya, kid... we've been through this before.

"That's fine," I told him. "But I still have to take you to school or I get in big trouble. Whether you listen is your decision."

His tirade of abuse continued in the van on the way to drop off Stitch at daycare. Bear's school is normally my first stop, but something told me that might not be a wise decision this morning. Glad I listened to my instincts.

When we arrived at Bear's school, he was out of his seat belt and in the back of the van before I had even turned off the radio. I've learned from previous experience to stow our "stow-n-go" seats when he's in this kind of mood. It makes it easier to crawl in the back of the van and drag him out. If I don't he hops over the seats and then back over them as I run around the van like a fool. Today he pulled a new trick, though, and scooted to the front of the van, hopping out one of the doors before I could grab him. I have to say I'm surprised it's taken him this long to think of that.

Off he trotted to the front doors with me trailing behind, thinking that perhaps this was going to go better than anticipated. Wow...I couldn't have been more wrong.

As soon as we were inside the doors, Bear let loose. He started kicking the metal window frames of the entrance way, which reverberated loudly. The school secretaries can now tell at a glance what kind of morning Bear and I have had, so one of them dashed for the teacher who works with him. Bear adores her, but this morning he lashed out at her as well, calling her names and kicking at her. Another teacher who works with him was drawn by the commotion, and between them they wrestled him away. Actually, they carried him, but that's nothing new.

Twenty minutes later the phone rang at home. Bear had thrown two chairs, hurled Lego around the room, and spit on the floor. Both teachers were still with him and it wasn't going well. Could I come get him?

Back at school, I crouched down to talk to Bear, who was hiding out under a counter. I held my hand out to him and reassured him that he was OK, that Mommy was here and we'd help him calm down. He took my hand and crept out.

"I told you I'd do this," he reminded me as he glowered at me, "and it worked."

Well, can't say he didn't warn me.

Mom's Income -- The Real Cost of Childhood ADHD

As I sit here in the middle of the afternoon, chaos reigns around me. On the table beside me sits a stack of bills that I'm trying to juggle payment on -- I have to decide which ones need to be paid now and which ones can wait until next payday. In the living room Stitch is playing, happily throwing blocks around and laughing madly as they bounce off the furniture. Down the hall Bear, who should actually be at school right now, is playing his Leapster, the fact that it's an "educational" game allowing me to fool myself into believing it can be classed as "work."

I stare at the bills, willing them to just disappear. Disappearing in a puff of smoke would be preferable, since then there'd be no trace left of them. Money gets a little tight in the ODD household because, even though TheODDDad has a pretty decent job, and for that I'm grateful, I work from home part-time and currently bring in about half of what I would be earning if I worked full-time. We manage to pay the mortgage and the bills, but there's not a whole lot extra (if any) left at the end of the month. We'd cut back on our spending, except there's really nothing left to cut. We have basic cable and neither of us owns a cell phone. We have friends over instead of going out. When we do go out, we've been known to ask my niece to babysit for free because we can't afford to go out and pay her. (For the record, my almost-16-year-old niece is one of the most important members of our support network. She has been on the receiving end of Bear's behaviour more than a few times and knows how to deal with him and laugh it off like a pro. Because she's seen it firsthand, she's one of the few people who truly "gets it," so she's always happy to help if it means we get out of the house.)

The fact of the matter is that we really need to be a two-income family. We need to be, but we aren't. We need to be, but we can't be. I realize there are a lot of families in the same boat given the state of the economy, but the economy isn't our problem.

So why then, you ask, aren't I out bringing in more money? Well, if you must know (you're so nosey!), we have a child with special needs, and just about any mom with a special needs child will tell you how difficult it is to hold a full-time job AND do everything you need to do for your child. Something, somewhere, has to give, and it's very often the ability to hold a full-time job.

Think I'm exaggerating? A recent study published in the journal Pediatrics revealed that overall earnings of mothers with a child with autism are 56% lower than mothers whose children don't have any health limitations. This is likely due to the fact that mothers of children with autism often have to leave the workforce altogether or take lower-paying jobs in order to properly care for their children. Interestingly enough, the study showed that only the mother's income was affected, not the father's.

Granted, the study looked at mothers of autistic children, not children with ADHD. But while autism and ADHD are two completely unrelated conditions, they can be very similar in their outward manifestations. In fact, a proper diagnosis of ADHD often involves ruling out autism. Both can cause behavioural problems, problems in school, difficulties in social interactions...etc, etc...and necessitate all kinds of interventions and specialists. Based on my own experiences and those of other mothers I know whose children have ADHD (especially when there's an accompanying diagnosis of ODD, anxiety, or any of the other conditions that often go hand-in-hand with it), I would say we're in the same boat.

Bear's challenges mean that he rarely gets to school before 10:00 a.m., if he gets there at all. His anxiety means that summer programs and daycares are out of the question. Phone calls from the school come weekly, although at one point they were almost daily. When he does make it to school, I don't know from one minute to the next when I'll be called to come get him. Suspensions are fairly rare now, but they were a rather frequent occurrence at one point. Until last week, we met weekly with a counsellor to work on his anxiety issues. Although that's over for now, there will be more behavioural interventions as he gets older that will require meetings and appointments. Add in appointments with doctors/specialists and meetings at the school and you suddenly find that you are almost unemployable at a traditional 9-to-5 job. You are an employer's worst nightmare -- someone who may or may not show up for work on time (or at all), who may leave in the middle of the day on a moment's notice, who receives personal phone calls at work on a regular basis, and whose mind isn't on her job...ever.

I'm fortunate in that I have skills that allow me to work from home and to bring in enough money to makes ends meet, but let's just say that Freedom 55 isn't exactly in our future.