I'm too scared to say that word.
"Attention Hyperactivity Disorder (ADHD) is not new: it was first described almost 100 years ago, and the beneficial effects of stimulant medication have been well known for over half a century.
"Today when we talk about ADHD we refer to a slight but demonstrable difference in normal brain function that causes a clever child to underachieve academically and to behave poorly, despite receiving the highest standard of parenting. This cluster of behaviours were once called Hyperactivity, then Attention Deficit Disorder, and now Attention Deficit Hyperactivity Disorder.
"With so much current interest in ADHD one might think that we are in the midst of an epidemic. But ADHD is occurring no more frequently than in the past - we have just become more skilful at recognizing a very real condition that previously was missed and mis-diagnosed."
Dr Christopher Green - The new Understanding of ADHD
As many people know, our family took a sharp turn down a completely different road this time last year when our youngest son was diagnosed with Aspergers. I will forever be grateful to a teacher who dared to have the conversation with us and a principal (and staff) who supported us immensely throughout that time (and beyond!!). There are others who were also very supportive, particularly those with children with Aspergers/Autism who went through the painful journey themselves.
But what many people don't know is that our son was also diagnosed with ADHD. This is something that is quite common with Aspergers/Autism and probably due to the same parts of the brain being wired differently. But a few weeks ago I realized that I'm quite okay with telling people that my son has Aspergers but rarely tell anyone that he has ADHD. In fact, the Asperger badge we often wear with pride - though at times it's incredibly hard, frustrating and emotional. But when it comes to ADHD, I refrain from telling people. And dare I ever tell them that our son is now medicated!
Why?
It's a simple yet complicated answer. Certain words in our culture evoke certain emotions. Words have power and with them unwritten understanding which can be both positive or negative. Words conjure up a picture. What I've noticed is that when you mention the word Aspergers/Autism it brings with it a certain amount of empathy, understanding and acceptance (and hopefully not pity). I often disagree with posts I see on the internet telling people not to be judgmental of Aspergers/Autism. Some people are (though they are usually judgmental of the behaviour than they are of the label and it more often than not comes down to lack of understanding or knowledge of the disorder) but 'most' people are quite empathetic and really do try to understand it. But when you mention the word ADHD it's like opening up a can of worms of negativity, judgement and dare I say it - disapproval. It's like once you mention the word ADHD, you find yourself in the 'bad' parenting category with a child who needs a good smack on the bottom. And yes, I have seen and heard comments that say exactly that!
And then we have the whole medication debate which is another level in itself. What astounds me is that those with the harshest and loudest opinions have never lived with a child with ADHD! Are there people in this world who lack parenting skills? Yes. Are there children who are undisciplined and out of control because of it? Yes again. But to group ALL children with these behaviours in this category is both wrong and very ignorant. Yet people do it all the time. And the parents who have their children on medication say nothing and they usually are the ones who are parents who need commending for their commitment and patience because the job they do is often so very hard.
Have you ever stopped to really think about what it feels like as a parent to give your child stimulant medication every day?
It's worth thinking about.
This confronted our family and I have to say, it was one of the most painful decisions I was faced with as a mother. Let's quickly put a few misconceptions to bed first. Stimulant medication is NOT speed - contrary to what people think. It's a synthetic 'form' of the components of amphetamine (yes my past history as a drug and alcohol counsellor comes in handy!). I usually explain ADHD like this. There is a part of the brain that is sluggish and not firing the way it should. As a result, the part of the brain which controls emotions and behaviours over-fires to make up for the deficit. This causes the hyperactivity, poor impulse control, lack of concentration, poor organization skills and everything else that goes with ADHD. Stimulant medication targets that part of the brain which is sluggish, bringing it to equilibrium therefore leaving the other parts of the brain to 'calm down' and function as normal. It might not be a medical explanation, but it gives you an idea as to why stimulant medication works. And another thing, stimulant medication is NOT addictive nor are there any withdrawal symptoms.
I will be honest with you. I hate the fact that every day I have to give my son a synthetic drug. I hate that it is being pumped into his system to help him be calmer, think clearer, concentrate at school and manage his behaviour.
I hate it I hate it I hate it.
So why do I do it?
Because this is not all about me. I've sat back and watched my own child not be able to sit down in school, not be able to learn though he is quite intelligent, have huge meltdown's and anger outbursts daily which often lasted for hours and have difficulty with friendships. It left our family in crisis, walking on eggshells and wondering when the next meltdown was going to occur.
And then you add Aspergers on top of that and you have a walking human bomb.
So in some ways you end up stuck between a rock and a hard place. Live in crisis, head in hands crying at the end of each day because of your failure as a parent, with an angry, defiant and difficult child - or medicate with the hope of at least some peace and equilibrium in the family. Not only that, but the sibling must also be taken into account and his ability to cope with a brother behaving like that. And then there's the child who lives in a chaotic world, unhappy, angry and a social outcast. It's as much about him as it is about all of us.
Was there really a choice?
We knew we had to give medication a try because the one thing we could not risk was that we would resent our own child. Tut tut - would any of us really do that? Resent our own child? Never! But live with a child with ADHD long enough and that's the risk. I adore my children and I am their greatest advocate - anyone who knows me knows that I don't need to convince anyone of that. But the risk of resentment was growing and the future for an un-medicated child is a very uncertain one. Lack of education, lack of connectedness with family and peers and social deviance is just a few things that face a child with ADHD who is not given the intervention they need. I couldn't risk that for my own child so in some ways I think the medication issue was taken out of our hands. He has to function in society and I have to function in the family.
I can't tell you the difference medication made to our family. It's funny in a way but there are days when I do forget. Recently life has been hard with our young one as his anxiety has increased and life has been difficult for him. But I think I've forgotten what it's like to have him un-medicated and I'm not about to be reminded! Usually within half an hour of him being out of bed in the morning I'm reaching for the bottle! It does come with a few side effects which varies from child to child. One of the biggest side effects is that it takes away his appetite making it very difficult for him to feel hungry. On top of that as part of his Aspergers he often eats only a handful of food items for a long period of time. He fixates on a few foods and will only eat that for a long time until he has another positive experience and changes. He also often won't eat 'communal' food (food he thinks others may have touched or is shared) and has issues with certain tastes and textures. This means that we are constantly having to have his weight checked and he sometimes has to take medication to stimulate his appetite.
So will you do me a favour? Next time you hear the word ADHD or medication, before you heap judgement on a parents head, stop and think about what it would be like for us and our children to live with this very real and difficult condition. My greatest wish is that one day I'll have the guts to say, 'my child has Aspergers and ADHD' but I think that's a while off yet. I'm not even sure whether I've come to terms with it all myself. Recently the full reality of him having Aspergers has hit me - but that's for another blog.
For me, this is a very personal and difficult blog to write but one I felt I needed to do because it's such an emotive subject. ADHD has been around for a hundred years, it's definitely nothing new. Maybe it's up to us parents who have to live with this day in day out to speak out and educate those around us to the reality of this condition. I'm not sure whether the worlds idea of ADHD will ever change - one can only hope it will. I think the world's view of Aspergers/Autism is changing so who knows!
Oh, and can I finish with this? Within 2 weeks of taking medication my son was asking for it. Why? Because he likes taking drugs? NO! Because he knew it helped. He knew he felt calmer. He knew he could better cope with the day. He knew he could sit down and do his work at school. He knew he had a better chance with his friendships. He knew he was happier.
So for that reason alone, I'm thankful.
"Today when we talk about ADHD we refer to a slight but demonstrable difference in normal brain function that causes a clever child to underachieve academically and to behave poorly, despite receiving the highest standard of parenting. This cluster of behaviours were once called Hyperactivity, then Attention Deficit Disorder, and now Attention Deficit Hyperactivity Disorder.
"With so much current interest in ADHD one might think that we are in the midst of an epidemic. But ADHD is occurring no more frequently than in the past - we have just become more skilful at recognizing a very real condition that previously was missed and mis-diagnosed."
Dr Christopher Green - The new Understanding of ADHD
As many people know, our family took a sharp turn down a completely different road this time last year when our youngest son was diagnosed with Aspergers. I will forever be grateful to a teacher who dared to have the conversation with us and a principal (and staff) who supported us immensely throughout that time (and beyond!!). There are others who were also very supportive, particularly those with children with Aspergers/Autism who went through the painful journey themselves.
But what many people don't know is that our son was also diagnosed with ADHD. This is something that is quite common with Aspergers/Autism and probably due to the same parts of the brain being wired differently. But a few weeks ago I realized that I'm quite okay with telling people that my son has Aspergers but rarely tell anyone that he has ADHD. In fact, the Asperger badge we often wear with pride - though at times it's incredibly hard, frustrating and emotional. But when it comes to ADHD, I refrain from telling people. And dare I ever tell them that our son is now medicated!
Why?
It's a simple yet complicated answer. Certain words in our culture evoke certain emotions. Words have power and with them unwritten understanding which can be both positive or negative. Words conjure up a picture. What I've noticed is that when you mention the word Aspergers/Autism it brings with it a certain amount of empathy, understanding and acceptance (and hopefully not pity). I often disagree with posts I see on the internet telling people not to be judgmental of Aspergers/Autism. Some people are (though they are usually judgmental of the behaviour than they are of the label and it more often than not comes down to lack of understanding or knowledge of the disorder) but 'most' people are quite empathetic and really do try to understand it. But when you mention the word ADHD it's like opening up a can of worms of negativity, judgement and dare I say it - disapproval. It's like once you mention the word ADHD, you find yourself in the 'bad' parenting category with a child who needs a good smack on the bottom. And yes, I have seen and heard comments that say exactly that!
And then we have the whole medication debate which is another level in itself. What astounds me is that those with the harshest and loudest opinions have never lived with a child with ADHD! Are there people in this world who lack parenting skills? Yes. Are there children who are undisciplined and out of control because of it? Yes again. But to group ALL children with these behaviours in this category is both wrong and very ignorant. Yet people do it all the time. And the parents who have their children on medication say nothing and they usually are the ones who are parents who need commending for their commitment and patience because the job they do is often so very hard.
Have you ever stopped to really think about what it feels like as a parent to give your child stimulant medication every day?
It's worth thinking about.
This confronted our family and I have to say, it was one of the most painful decisions I was faced with as a mother. Let's quickly put a few misconceptions to bed first. Stimulant medication is NOT speed - contrary to what people think. It's a synthetic 'form' of the components of amphetamine (yes my past history as a drug and alcohol counsellor comes in handy!). I usually explain ADHD like this. There is a part of the brain that is sluggish and not firing the way it should. As a result, the part of the brain which controls emotions and behaviours over-fires to make up for the deficit. This causes the hyperactivity, poor impulse control, lack of concentration, poor organization skills and everything else that goes with ADHD. Stimulant medication targets that part of the brain which is sluggish, bringing it to equilibrium therefore leaving the other parts of the brain to 'calm down' and function as normal. It might not be a medical explanation, but it gives you an idea as to why stimulant medication works. And another thing, stimulant medication is NOT addictive nor are there any withdrawal symptoms.
I will be honest with you. I hate the fact that every day I have to give my son a synthetic drug. I hate that it is being pumped into his system to help him be calmer, think clearer, concentrate at school and manage his behaviour.
I hate it I hate it I hate it.
So why do I do it?
Because this is not all about me. I've sat back and watched my own child not be able to sit down in school, not be able to learn though he is quite intelligent, have huge meltdown's and anger outbursts daily which often lasted for hours and have difficulty with friendships. It left our family in crisis, walking on eggshells and wondering when the next meltdown was going to occur.
And then you add Aspergers on top of that and you have a walking human bomb.
So in some ways you end up stuck between a rock and a hard place. Live in crisis, head in hands crying at the end of each day because of your failure as a parent, with an angry, defiant and difficult child - or medicate with the hope of at least some peace and equilibrium in the family. Not only that, but the sibling must also be taken into account and his ability to cope with a brother behaving like that. And then there's the child who lives in a chaotic world, unhappy, angry and a social outcast. It's as much about him as it is about all of us.
Was there really a choice?
We knew we had to give medication a try because the one thing we could not risk was that we would resent our own child. Tut tut - would any of us really do that? Resent our own child? Never! But live with a child with ADHD long enough and that's the risk. I adore my children and I am their greatest advocate - anyone who knows me knows that I don't need to convince anyone of that. But the risk of resentment was growing and the future for an un-medicated child is a very uncertain one. Lack of education, lack of connectedness with family and peers and social deviance is just a few things that face a child with ADHD who is not given the intervention they need. I couldn't risk that for my own child so in some ways I think the medication issue was taken out of our hands. He has to function in society and I have to function in the family.
I can't tell you the difference medication made to our family. It's funny in a way but there are days when I do forget. Recently life has been hard with our young one as his anxiety has increased and life has been difficult for him. But I think I've forgotten what it's like to have him un-medicated and I'm not about to be reminded! Usually within half an hour of him being out of bed in the morning I'm reaching for the bottle! It does come with a few side effects which varies from child to child. One of the biggest side effects is that it takes away his appetite making it very difficult for him to feel hungry. On top of that as part of his Aspergers he often eats only a handful of food items for a long period of time. He fixates on a few foods and will only eat that for a long time until he has another positive experience and changes. He also often won't eat 'communal' food (food he thinks others may have touched or is shared) and has issues with certain tastes and textures. This means that we are constantly having to have his weight checked and he sometimes has to take medication to stimulate his appetite.
So will you do me a favour? Next time you hear the word ADHD or medication, before you heap judgement on a parents head, stop and think about what it would be like for us and our children to live with this very real and difficult condition. My greatest wish is that one day I'll have the guts to say, 'my child has Aspergers and ADHD' but I think that's a while off yet. I'm not even sure whether I've come to terms with it all myself. Recently the full reality of him having Aspergers has hit me - but that's for another blog.
For me, this is a very personal and difficult blog to write but one I felt I needed to do because it's such an emotive subject. ADHD has been around for a hundred years, it's definitely nothing new. Maybe it's up to us parents who have to live with this day in day out to speak out and educate those around us to the reality of this condition. I'm not sure whether the worlds idea of ADHD will ever change - one can only hope it will. I think the world's view of Aspergers/Autism is changing so who knows!
Oh, and can I finish with this? Within 2 weeks of taking medication my son was asking for it. Why? Because he likes taking drugs? NO! Because he knew it helped. He knew he felt calmer. He knew he could better cope with the day. He knew he could sit down and do his work at school. He knew he had a better chance with his friendships. He knew he was happier.
So for that reason alone, I'm thankful.
You guys are amazing parents and you are dong a fantastic job! Loved reading this post, it's so honest and true. Someone going through this same issue will be immensely blessed reading this!
ReplyDeleteThank you Beulah!! That's why I write sometimes very personal and emotional subjects because I know there would be many parents out there feeling the way we do. My hope is that it gives them hope and releases them from the guilt of parenting a child with these types of needs. Bless you my friend!!
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