Monday, 23 May 2011

ADHD Myth and Reality

Since J was diagnosed iwith ADHD (along with ASD, Dyspraxia and Hypermobile joints). I feel I have waged a constant internal war with those who think ADHD is all rubbish and an excuse parents have dreamed up to excuse bad behaviour. "It's a myth", "just an excuse for letting a child run riot", "it's rubbish and about poor parenting", "we didn't have all these children diagnosed like this when I was a child", "it's all about getting extra benefits out of the system", they get their kids labelled and then they claim benefits (amazingly these people think it is THAT easy) etc etc etc.

I have heard all the above and more since J was diagnosed, maybe because I have read about the condition and made myself aware of the history and theories behind it. Sadly the above comments are not restricted to strangers and much to my irritation and sadness have come from members of J's family. And I say "irritation and sadness" because if J does not have his family behind him what hope is there that anyone else will support him.

Other little gems regarding his Dyspraxia and ASD have been "he's not THAT bad", "let's teach him to use a knife and fork right now" (as the Occupational Therapist has struggled I doubt YOU will have greater success) which also blatantly suggests the advisor in question has little opinion of my parenting skills.

But back to ADHD. There appears a concerted effort by the powers that be currently, to label anyone disabled and claiming DLA as a "scrounger sponging off the State". The Daily Mail and The Telegraph are cases in point and in no time you nave those who have swallowed their copy of the Daily Mail for breakfast spouting forth about those with disabilities for daring to claim the benefits they are ENTITLED to.
This is bad enough without getting the same people - and there are now thousands of them, onto the subject of the "hidden" disabilities. Evidently people like me are responsible for fecklessly allowing our children to run riot and we the then "get them labelled" to excuse poor behaviour. They are then full on in their condemnation of such parents "claiming benefits". They completely ignore the fact that many parents claiming DLA for a child might also be working and paying taxes, after all that does not fit with their narrow world view.
If only getting a diagnosis were that simple, in actual fact J was not diagnosed until he was over the age of 7 and even then it took time for the speech and language therapists, occupational therapists, educational psychologists and community medical officers to decide that J would benefit from being assessed by the social communication team. Once he was seen and assessed though the specialist team had no hesitation in diagnosing J with ASD. Getting a diagnosis of ADHD, although this was strongly suspected from the assessments which had already taken place took even longer, and was not formally diagnosed until other assessments had been completed.

So reading the continued propaganda being published by an increasingly Tory controlled press is disheartening,. I can tell myself that they are all arseholes ignorant people with a narrow world view, but this does not take away the fact that there are an awful lot of them with many hundreds of thousands of readers who hold an equally narrow world view. It is the. I feel depressed, it is then I despair, it is then I wonder about J's future life in a world which has decided his disability does not exist. All I can see for him is a future of isolation, an oddball with a made up label according to an increasingly intolerant and selfish population and a future of mental health problems as a result. It is then I want to cry.

Tuesday, 17 May 2011

The fuzzy wuzzy foggy reality!

Sometimes life is just too overwhelming and I don’t know where to begin. It’s a bit like looking through a smudged glass, all a bit misty and foggy and hard to see the reality. I find it hard to FEEL the reality, that’s what it’s like being me and what it has always been like. I told a counsellor once that my life and head felt like an un-tuned TV – all fussy and noisy without clarity. I don’t think she knew what to make of it or me.


All I can say is “it’s always been like that” because it has and I don’t know how this will ever change.

Some time ago (around 5 years ago) with yet another bout of serious depression I was given a new drug and the dose was increased. It was coupled with a beta blocker for anxiety - another issue which has always plagued me. I took the tablets for a week and then they kicked in.....lovely. For a few blissful days I experienced what it must be like to feel normal, I was alert, wakeful, controlled, calm and able to cope with the world. The disordered eating stopped and I had unending patience with James who I found challenging and difficult in the years before diagnosis explained his odd behaviours. It was wonderful.... and temporary, after around one week I returned to my normality which is foggy and unfocused.

I have had endless discussions with my GP regarding these issues and suggested ADHD/ADD. I have suggested Dyspraxia (which I am certain I fit) all to no avail, she will not refer me anywhere because I am an adult. Not only am I an adult but I am an adult “who has achieved and achieved well”. Yes I am but how much more could I have achieved  or how sooner could I have achieved things if the issues which have plagued me all my life been identified in childhood with a definite diagnosis.  There was lots of vague talk about my brain” working differently to other children”, just what did they mean? Meetings with an Educational Psychologist in childhood placed the blame firmly at my Mum’s door because her marriage had broken down despite the fact that it was my father who had left my mother high and dry. Great! If in doubt blame the mother, thankfully those days are gone.

My argument is that dyspraxic children grow into dyspraxic adults with the same challenges to their day to day lives. Likewise J is not unlike me as a child according to my Mum, let me think how many labels J has....and how much support he receives which was not there for me.

Interestingly I have learned this week that I had delayed speech and language development as well as difficulties with socialisation in school, the child who was bullied because she didn’t understand how to relate to the other children effectively, the child who was scared of flies and balloons which went BANG and left me feeling shaky, the total and utter disorganisation, the dislike of some wools next to my skin, the dislike of lots of background noise, facial blindness  meaning non-recognition if someone was seen out of contaxt and many of these issues remain. Not for no reason am I a tad isolated at times, not for no reason do I find it easier to relate to my cat who is more predictable than I find people to be sometimes.

Sooo... my GP will refer me nowhere and I am not accepting it, I am taking matters into my own hands and have a private appointment with a Clinical Psychologist in July. I want answers to the difficulties I have had all my life and which I still have even though I have learned many coping mechanisms. It will be interesting to see what she comes up with...if anything. Even no answer from her will be an answer of sorts. At the very least I hope it will give me some insight into this feeling of being overwhelmed and foggy.

Thursday, 5 May 2011

Music, Medication and Amazing Relatives

I promised to report back on the medication so here it is...... it works. No idea of the how's and why's, just know that J's concentration levels are much improved and the only thing we've done differently is the pills.

A first music lesson has been successful and J learned the notes C, D and E which he has been slowly torturing me with ever since. And the same day as the music lesson J's class did "long jump" practice ... and J won!

Which leads me neatly on to famous relatives. It's a little known fact ( until now) that J has as a fifth cousin ( so very distant then) an athelete by the name of Lynn Davies who in 1964 won an Olympic gold medal for Great Britain in the Long Jump. He managed a distance of 8.23m which has never been equalled by a British athlete since. J wanted to know if Mr Davies aka "Lynn the Leap" had "jumped as far as I did"? My answer of "just a bit further dear" did not impress J who has serious winning "issues".

On the subject of famous relatives J's fourth cousin is the model and actress Lily Cole who is reported to currently be the 6th richest woman in the UK. Would you think me bad if I asked
her to be J's Godmother when he is baptised later this year?

"Yeah I know you've never met us but you were the first person we thought of - honest".