Tuesday, 7 January 2014

ADHD Awareness? How about Acceptance and Acknowledgement?

I have read a few posts on Facebook this week about it being "ADHD "Awareness" Week. To be honest I have no idea whether that applies to the UK or the USA but it actually makes little difference. Here, we are aware of ADHD every. single. day. From sun up to sun down - and well beyond. Oh to be "unaware" of ADHD and the impact it has on our family for a brief hour. Such unimaginable bliss.

I've (almost) given up ranting and railing against those who postulate that ADHD is simply "bad parenting".  My "Dear Libby" piece  was written well over two years ago and even the "Horizon" documentary did little to dispel the persistent myth that parents are responsible for this disorder. Society is blind to what it is reluctant to acknowledge, or has no answer for.


You would think the three children I have apparently parented "well" would provide some kind of evidence for those who seek to judge, but no. When H was younger a mum from his class actually had the gall to say to my face that since I "clearly couldn't control my son I shouldn't have been allowed to have more children". I can't see her saying that to the mum of a child in a wheelchair,  but that's the problem with invisible disorders.

We are shockingly poor at acknowledging disorders of the mind in the Western World. The stigma attached to something we cannot see or easily prove is abhorrent, it often seems that blaming someone is the default option. But there was a time when bacterial infection could not be proven, the dark days of the Middle Ages when Bubonic Plague swept across the known world were scary times - but parents of children with ADHD, and those suffering other mental health issues are still to a large extent living in that world. A medical diagnosis carries little weight in the eyes of the majority, you just can't tell people what they don't wish to hear.

So more than awareness of the very real disorder that is ADHD, I would rather have acceptance. Acknowledgement that it exists, that it is no one's "fault" and those living with it are not failures, bad parents and in any way to blame for their children's condition.
I have four children, one of whom has ADHD. He actually has quite a large collection of diagnoses, none of which are anyone's fault. He was given a rubbish hand in the lottery of life in several respects, but most of the time I choose to focus on his strengths - which are far greater in number but all too often get drowned out in the ASD/ADHD noise which surrounds him.


Understanding why your child behaves as he does IS important, incredibly so. But coping with it - living with it day in day out is another matter. H didn't sleep through the night until he was nine, and "bedtimes" are still ridiculously late. To be honest, I have no idea whether he sleeps through now at almost 12 but he no longer gets into bed with us or comes in multiple times to inform us that he can't sleep. He used to wake around 5am (irrespective of the hour he went to sleep) but thankfully it's later now. He is either difficult to get out of bed, or goes screaming and yelling round the house in search of someone - or some cat - to chase or annoy. He has described his head as "fizzing" and "jangling" and I can well believe it. Without medication he would not be in school, with it we walk a precarious tightrope between fixed term exclusion or internal isolation and just about hanging-in-there-by-the-skin-of-our-teeth. But we cope. Just about.

When he was younger we had to instal catches at the top of every door upstairs to restrict opening whilst not closing them to keep his younger siblings safe. He has trashed his room multiple times and broken doors whilst kicking them, lying on his back on the floor. Now he is older he does calm down much faster, but the raging hormones of adolescence mean the outbursts have taken on a new strength - plus he has grown hugely over the past year. I have had to take a Unisafe Course to learn how to keep myself and his siblings safe in the past, and even when completely unaggressive he has landed himself in A and E several times because he can be search a whirlwind of hyperactivity. This inattentiveness and impulsiveness has metamorphosed from a physical to mental type with age, so his mind flits constantly. Better than his body perhaps, but this denies him the satisfaction most children on the Autism Spectrum gain from a deep obsession over a favourite subject. H will become the world expert on a specific subject - then drop it for something else. Constantly.

So each night as I go to bed and prepare for the next day I wonder if I can get up and do it all again, because without a doubt mornings are the most difficult time of the day. By the time you see me, even at 8am outside school I will have been up over two hours and battled for most of that time to get him ready and out of the door, feeling like I have run a marathon, climbed Kilimanjaro and towed a bus. If I snap your head off, take something the wrong way, or appear to ignore you it is because already at 8am I am over-loaded, over-stressed and over-emotional. And that's only one reason why it's such an isolating condition, and not just for me but for H and for the whole family. Never mind the difficulty going anywhere, the stares and looks of pity and or disapproval as your child fails to behave as society expects. He's only been to one birthday party in his life, until recently had no play dates, and has had to leave activity and activity that we have tried to involve him in. There is support for so many disabilities these days, but the invisible ones are all too often still neglected.

So having told me it was "too hard" to try and behave this morning, after making one of his siblings cry and lashed out at another, thrown objects around the room and wiped his breakfast down himself and the sofa, chased the cat outside in bare feet through the mud and having been cleaned up, dressed and ready to go H asked me-

"Are you cross Mummy? It wasn't the worst morning. It could have been a LOT worse".

Yes. It could.


“This post is an entry for #MorningStories Linky Challenge sponsored by belVita Breakfast. Learn more atwww.facebook.com/belVitaUK.”
H and Dorothy Whiskers review Belvita Morning Biscuits here, thanks to BritMums for our free samples!

36 comments:

  1. Oh I LOVE this post. It's giving a true and honest picture for what it really is like, and the sad thing is you are not alone, there are many more parents like this. Who can 'parent' extremely well (who's the expert on that anyhow? Certainly not Supernanny) but who feel judged and blamed when in reality it's out of their hands. Acceptance would be great (personally I don't feel we should forget about the awareness either, as there's a whole heap of people who have NO idea) and just a lot less judgi-ness from people please. Wishing you some more sleep and hoping you have a good 'support network' (don't you just love these phrases?! at least I didn't use an acronym ;)) x

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  2. Thanks Steph. Yes, awareness is *really* important, I very much wanted to push the acceptance side as it often feels like it's us against the world with this - and like you say, I am by no means alone. xx

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  3. I agree with you, so many times people have said to me or infront of me that they think adhd is not a real condition, and even autism. I look at them like "err... what the.....???" and they quickly add "oh, I don't mean your child! But many of the badly parented children claiming to have adhd" It must be so infuriating! Knowing how difficult and longwinded it is to get diagnosis and support, I just dont think people can easily "fake it" that their children have adhd as many people (even teachers) seem to be sometimes peddling.
    Definitely more acceptance and understanding is needed

    anna (intheplayroom)

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  4. Thanks Anna. Yes, I agree with you, I was a teacher and a a professional you need to respect diagnoses and work with them - they are, after all, made by other professionals!

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  5. thanks so much for sharing, i think like others have said awareness is the key xx

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  6. Hoping over fromt he Blog Supprt FB group. I like this post. I am autistic and have made many posts aobut autism and the need to accept and acknowledge it. I recoon that awareness really means acknowledging, however.

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  7. I think it is quite hard for people who never came across and simply just think that. I hope they read it and understand this awareness.

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  8. Hi,
    This is an interesting post. I have autism and have often written about a utism acceptance and acknowledgement. I reckon that's really what some people mean by awareness though.

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  9. Thanks Astrid. I disagree though- the media have made many people aware of the existence of ADHD but there is still a lack of acceptance and acknowledgement that it is a very real condition which has a massive impact on families.

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  10. An excellent post. My eldest has recently (finally) got his ASD/ Aspergers diagnosis. I have had to endure 15 years of people assuming he was naughty, poorly parented and it is so hard. Just because you can't see it doesn't mean it's not there.

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  11. I relate to this so much. My son has Aspergers and is now 14. When he was young we knew something was amiss, but professional after professional refused to commit to just what it was. We eventually got a diagnosis, but long before that I started helping my son in ways I knew would help him personally, and his ways of understanding and doing things. Like ADHD (which I have no doubt he would have been dignosed with if he were in the primary education system now), it is something which can have a real impact in the classroom, and proper understanding is needed to help children get all they can from their education. It takes alot of people making alot of noise for things to move on, so I commend you for that. Very well written piece :-)

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  12. Thanks for all your comments - very much appreciated.

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  13. Oh gosh, you are AMAZING!! I can't imagine what you must go through each day. xx

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  14. Sounds like very hard work. Unfortunately a lot of people still see ADHD as just naughtiness so it is great when people living with it have a place to tell it like it is and raise awareness.

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  15. My younger brother has ADHD. We didn't really know much about it before he was diagnosed but my dad and step-mum have had amazing support for him x

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  16. One of my older children had suspected ADHD for a while, I took him out of school for a year and home schooled him before returning him to mainstream education.I remember it all being a really hard time - and that it was looked at as a 'fancy' name for being naughty which of course is utter nonsense. Total respect to you x

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  17. You sound like you are doing a marvellous job under the circumstances. Acceptance is a good thing to concentrate on, I was mortified on your behalf at what they other parent said to you!!

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    1. One of those occasions when you are speechless at the time but can think of a LOT to say later!!!

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  18. What a great post. I am sure there are many, many people who are so grateful that people like you are getting this out into the open and talking about it...

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  19. Great post and thanks for raising awareness. I see a lot of misunderstanding around ADHD so the more posts like this, the better x

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  20. Goodness, I can't believe there are still people around who think it is bad parenting! I know several fabulous parents who struggle with a particular child, and I've noticed that where it is recognised and correctly supported, the children concerned respond really well. I have no personal experience of this at all, but you're right that society as a whole needs to accept ADHD for what it is if we are to move forward

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  21. I think the blogging community does a great deal to raise awareness - but that's is often where it sadly stays. It must be awful for you and I can understand your need for acceptance and wider acknowledgement. Absolutely. Hope you get more of it all - you're a marvellous mum X

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  22. Such a thought proking piece. My little girl suffers an invisible condition and the constant explaining is just exhausting. It is also so hard on the siblings. Stay strong.

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  23. What an honest insight into living with and caring for a loved one who, through no fault of anyone, has an incredibly difficult condition to live with. I agree with you on the acceptance and understanding, but sadly the first step in getting closer to those is awareness. The big problem is that it is easy to create awareness, however the understanding and acceptance takes an age.

    Sounds like you are doing a fantastic job x

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  24. Someone sent an Anon comment about ADHD awareness week being in the autumn not now. I tried to hit publish from my phone but we've had a power cut and it's gone missing. ... Thanks for the info though. I don't think it makes a difference to my Blog post tbh, people are always ADHD bashing, there was a big article in Times 2 at the weekend and there has been a spate of comments over the net since then.

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  25. I've read a couple of posts in the same vein this month. I too cannot believe people think this way, sadly with SEN everyone has an opinion, often unasked for. Thank you for enlightening a few more.

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  26. What a well written and honest article. it's really useful to be able to get an insight into the realities of day to day life.

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  27. Do you know what I hate most about this post?
    That so many people could be like me, reading it nodding my head, knowing completely what you mean. I hope that one day attitudes will change.

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  28. Good article. I'm facing a few of these issues as well..


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  29. These are the very best blog posts - the ones that tell it like it is and help to raise awareness by doing so. Thanks so much for sharing. Commenting for myself and on behalf of BritMums and thanking you for taking part.

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    1. Thank you Kate, that's really kind of you.

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  30. Incidentally, I like the way you have structured your site, it is super and very easy to follow. I have bookmarked you and will be back regularly. 
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