ADHD veterans needed desperately! (long)

[cariboo]

Today I've finally had to come to grips with the fact that ds(5) has true-blue ADHD & that it's an illness as debilitating as any other, perhaps more so.

He's on Concerta with a Ritalin top-up at 4pm but although the drugs help, they're far from being a cure. He's also in psychotherapy, soon to be 2X week. I lived with the hope that the docs had it wrong, that he would grow out of it but that's just not happening.

It's a stigma & either people flat out don't believe ADHD exists & that ds is a victim of bad parenting or they tell me that ds has too much lead in his system & I'm going about treatment the wrong way.

Today he had a ski lesson - private, one-to-one. His instructor was so angry by the end of the lesson that he was practically shouting at me. Ds meanwhile had skiied off (he's actually pretty good - 1st lesson & snow-plowing off on his own), come to a flat bit & collapsed, face-down. After having defended ds & myself to the instructor, I went to ds & found him sobbing his heart out in the snow. It was excruciating. I ached for him & felt like screaming & lashing out at the entire world. I gathered him up in my arms & rocked him, feeling all the anger & shame drain out of me in sympathy for his frustration & impulsivity.

What can I do? His school doesn't want him, his friends don't want him, even strangers don't want him. He looks like a little choirboy but my God, what a temper!

I need support from anyone who understands & is living the same nightmare or similar. How to endure this ambivalence of pity, love, compassion, frustration, fatigue, anger...? What with dd(8) diagnosed in October with epilepsy, dh being made redundant just before Xmas and ds doomed to self-medicating later in life with heroin, coke, speed. That's what I found out today. That kids with ADHD usually crash & burn at adolescence. I can't bear it but I have to.

Oh God, that sounds awful. Different set of issues here, but those days when everything just comes to smack you in the face all at once...........
I am sorry, wish I could say more, but someone far more useful than me will be along soon, and I didn't want to leave you unanswered xxx

Hi I didnt want to read and run.

Im so sorry your having a tough time. You sound like a very caring mummy and wife. I wish I could help more, but just wanted to say take care.x

i understand, i understand,i really do understand. my son was diagnosed with ADHD at 4.5 and he has just turned 13.this disability is so misunderstood and is continually bashed in the press-noone ever questions whether to medicate someone who is epileptic(sorry, no offence meant), but EVERYONE has an opinion if your child has ADHD even the bag lady(again no offence meant), but it is sooooo wearing.this disability is exhausting, and affects everyone in the family. you are right, medication helps, but is certainly not a cure. life can be miserable for children with ADHD-they are often in trouble at school, home, and making and sustaining friends is very difficult-can you imagine feeling noone likes you all the time? what does that do for your self esteem? my son too looks like any other 13yr old, but certainly doesnt act like one. he has high levels of anger and aggression-tonight we had two panes of glass smashed and he was screaming with rage in his room. my husband and i vere between wanting to strangle him,(we dont, before someone calls S.Work),and wanting to hold him and take away his pain-we cant, as he cannot express himself emotionally other than through rage even though he too has had psychotherapy. in most cases, adolescents only alchol and substance misuse, if they are NOT on medication, so dont dwell on that. pick your battles... start by sticking one of those ski poles up the instructors bottom, and dont justify yourself or son-he has a disability-its just not stamped on his forehead. make sure the school is meeting your sons needs, and not just treating him like a naughty child-get your Educ. Dept. involved if necessary. my son just about managed mainstream primary school, but is in an Independant secon. school, and is at least happier there, and they dont make abig drama out of his behaviour.one of my other sons has Dyspraxia, and both are on the ASD spectrum.and, oh yes, my husband is now not working and is also fulltime carer to help with my son.yes things are hard to endure but we do, and so will you and your husband. i help run a support grp- is there one near you? its a great place for sounding off and a mine of uesful info. the main support grp and info source for ADHD in Britain, is ADDISS-they have a great reading list. one last thing-LAUGH-if you dont, you will end up self medicating-now theres a thouhgt. wheres that bottle of wine?

Thanks bigpants1. It's good to have your support & feedback, even if it doesn't sound very hopeful. We live in Switzerland & ADHD is barely recognised here. I had to fight for over a year to get ds tested, diagnosed & then to find an available psychotherapist (most are booked up for months & won't even put you on a waiting list) & finally to get her to agree to try ds on meds. I thought they would have more of an effect on his behavior than they actually do but it's certainly a big improvement.

How do you control your ds' aggression and anger? How does he cope in society? Can he tell you what makes him feel the way he does?

And btw, I have ADD which was only diagnosed in 2007 & suffered from mood swings & depression all my life. Once I was fortunate enough to get a diagnosis, I started Ritalin myself & it's transformed me. I don't know how I would have had the strength to cope with ds (& dd) without it. But what I have is very different from ds.

hi i am total agreement with bigpants1.
I have a 9 year old son he was diagnosed with ADHD at 5 years he has been through many educational settings and transisitons in his little life. The more problematic ones being mainsdtream school, they have this stigma that ADHD is due to bad parenting and you can see it in their faces that they think you are just making excusses up. My son is on 36mg concerta xl and no its not a cure but it does help him greatly to concentrate and remain calm when in school. He attends at the moment a PRU school (pupil refer unit) which he is safe and happy there and is in the process of another transision to his 3rd mainstream school which i feel is going well. They have advertised and employed a special needs assistant just for my son. To enable this though you need tyo qualoify for the statementing process, not sure if this is a facility you have where your from but is worth looking into. ask your sons school to support you by putting him on an IEP individual education plan where they can set a couple of positive targets for your son to meet.Also my son is under CAMHS childrens and adolecents mental health service, though i have had a battle with them and difference of opinions (with the fight) i wouldnt be where i am today with my son without them.
Just last week (through lots of pushing and not giving in )my son finally had an ADOS test and proved what i have been trying to tell professionals for the past 5 years that he was ASD. it showed up that my son is well within the range for autistic spectrum disorder. When i mentioned this to one of my sons previous mainstrweam schools (his younger brother attends now and has to put up with the stigma of my eldest son) its amazing how quiet they have become and i feel like i have won this one, keep fighting for your sons sake it will pay off eventually.

DS1 is 16yrs, he has ADHD too.

I absolutely understand what you are going thru, i had a few times where i either wanted to sell him, or smash his head thru a wall. I think my sons worst years were between 7 and 9yrs but it varies for all. I was chatting with a mum the other day whose son is 14 and she says that his behaviour is the worst its ever been, and although she loves him dearly, she really dislikes him at the moment - a feeling i well remember.

During those 'dark times' i used to take any time i could - be that 10mins locked in the loo with a bar of choc! Begged family to have him as often as I could persuade (i was often met with 'but im tired and hes hard work' nah...REALLLY???) and made sure that that there was something to look forward to at the end of every day, however small it was.

I home-ed DS1 from yr6 (aged 9) and although it was extremely hard going, the change i noticed first was the decrease in anger - i suppose because i had removed all competition and as he was an 'only' at the time he got undivided attention 24/7, which is what he craved. It certainly IS NOT the answer to everyones problems but it helped with my child, although im surprised sometimes when i think back that we both made it through in one piece! but i also feel that we are closer as a result.

I can honestly say (through all that we have been thru) he is the nicest 16y/o ive ever met.Hes polite, he cares, hes helpful and doesnt complain too much, hes generally a happy chap, yeh he gets moody occasionally, but who doesnt??? but He is also developing a wonderful sense of humour!

He is however still incredibly impulsive, and somewhat anxious, but he is learning (slowly!) and he is quite 'young' - he likes playing with lego and 'superpower' type games in the garden (so long as he wins of course!)and still likes to have his own way, and still needs an itinerary which mustnt be deviated from! Because of this he doesnt really have any friends as yet but Im sure thats just a matter of time and it doesnt seem to bother him. Girls arent really his thing just yet. But we do occasionally talk about 'families' and how he will make a good father and husband when he older and married, which i truly believe he will be when hes ready. We have also chatted about contraception in passing, i feel its never too young once you know the basics.

We have also covered alcohol and drugs. He understands that he has ADHD, and what this means (in very basic terms). So when we were discussing alcohol and drugs i told him the truth, that i couldnt say exactly what sort of effect it would have on him, but in all likelyhood, it wouldnt be good. He knows what a coca-cola rush feels like and doesnt like it too much, he says its makes his head feel wierd and 'rushed' and he cant think very well. I explained that coke doesnt normally affect other people like that and really dont know what alcohol and drugs might do to him, incidentally he doesnt drink coke. He asked me what drugs and alchohol feels like to other people, i said that i didnt know and that some say its just like your dreaming, and others say its like your brain is on fire. He didnt like either option to be honest, but i was as honest as possible but erred on the side of caution. I also explained that it was likely because of his brain chemistry that it would affect him more and the effects would probably be more harmful, as his brain has to work twice as hard as everyone elses, so could probably be damaged more easily. I dont actually know if this is true.... but it could be.

This tack might not work with many kids, but it has with mine. perhaps when hes older he will give it a try, and fingers crossed he may be careful - after all ASD works in mysterious ways :p

I'm feeling very at the end of my rope. If anyone could give me some encouraging words, I'd be incredibly grateful.

I've been where you are now (I think). I often feel at the end of my rope. My child is not medicated and we struggle daily with his behaviour. A friend of mine (who also has an ADHD child) recommended a book to me. I read as much as I needed to to give me a different perspective. I don't know if I'm allowed to link to amazon, but they have the book:

www.amazon.co.uk/Edison-Gene-ADHD-Hunter-Child/dp/1594770492

I really can recommend it. It helped me look at him through my own eyes (rather than the eyes society tells me I should ).

There is a foreword that you can read on amazon here:

www.amazon.co.uk/gp/reader/1594770492/ref=sib_fs_top?ie=UTF8&p=S00P&checkSum=92zsH%2 BPVqLacQ7190SQywaCesF2SV9g5mAg%2B5EE5UWA%3D#reader-link

It may help in the (very) short term. I hope it does.

Not good at posting links. Sorry:

www.amazon.co.uk/Edison-Gene-ADHD-Hunter-Child/dp/1594770492

BPVqLacQ7190SQywaCesF2SV9g5mAg%2B5EE5UWA%3D#reader-link

I've just read through your first post again. You don't mention how old your DS is. My DS had a terrible temper which would escalate into a flying rage. This changed when he turned 12. I don't know if it was an age thing but he seems to accept himself more easily now (the temper was caused by his own frustration). I think part of his self-acceptance came from me - when I made a conscious effort to also accept him for who he is (irritating, annoying, frustrating but ooooh so lovable).

Also, when he does something amazing (and he does quite often) I make a huge thing about it. These children know they are different - they're far from stupid - and they need to know that the difference can actually be a good thing. This childhood stage is the hardest part of ADHD - our job as parents is to try and help them become rounded and balanced adults. That's not easy with normal children, especially these days. I also found that if I can under-react (as opposed to react or over-react) this can have a calming effect on my DS, to the point that we can actually have a sensible talk about his behaviour. If that makes sense.

Thank you, SaraHM. My ds is 5.5 yrs & a great big boy for his age - almost as tall as dd who is 8.9 - & this is an additional 'handicap' for him as he's always expected to act according to his height & build.

I used ds' scheduled appt with his psy today & poured out all my fears, guilt, confusion, etc. It helped enormously to lighten the load. Dh, although he loves us, is an older dad (already has 2 adult dds) & very "pull yourself together/stiff upper lip" iykwim. None of this psychology nonsense! So I do often feel very alone with these worries.

I would love to be able to get ds off his meds but realise that he needs them (I know he suffers from the anger & chaos his outbursts provoke, to say the least) for now, anyway. I'm hoping the therapy & my continued reassurance that I love him unconditionally will get him through.

Cariboo, it sounds like you are doing the very best you can under difficult circumstances. I have difficulties when my DH over reacts to DS's behaviour. It causes more unecessary stress, but there's nothing I can do about DH (he's only a man lol) and I have come to accept that I cannot change that. It's good that you could pour out your heart to the psy. I have also found that being able to voice your fears to somebody often helps to lift the load a bit.
Your heartache now will all be worth it when he turns into a man and realises what you've done for him. Hugs for you.

cariboo-Sorry this is a bit off topic but, I'm curious about your diagnosis of ADD. I suspect that I may have ADD too(it would explain a great deal) and don't know where to go at this point. I've also read that it is very difficult to get a diagnosis as an adult in the UK. Do you have any tips or suggestions?

Sorry not to have answered sooner jelly but I've been spending more time on FB & less on MN... like a kid with a new toy!

We are lucky to have private health care through dh's job & it was only after years of therapy with the same psych - who knows ALL about me & has tried me on at least 5 different drugs, including an anti-psychotic - who eventually made the connection between my emotional problems & ADD. It's harder to diagnose in girls/women because they're generally not hyperactive. My psych tried Ritalin on me more or less as an experiment. Switzerland is not exactly progressive with mental disorders but at least you can ring up any specialist you want in the phonebook for an appointment. I know that with the NHS this is far from being the case so I don't know what to suggest.

Hopefully someone in the UK will be able to give you some advice! Good luck.

Hi Cariboo,

My younger brother has ADHD/Aspergers/Oppositional Defiant Behaviour. He is now age 12 and extremely hard work, hates wearing clothes and can sometimes reduce my mum (and others) to tears. Can be a bit Jekyll & Hyde, one minute he loves the very bones of you next he can't insult/swear/annoy etc enough.

A big part (we find) about him is impulsivity. Acting before thinking (or acting especially to get a reaction) Also the aftermath of such behaviour (once the bad deeds have been done and thought about he is beside himself with remorse and anger for his actions. One example was he said he wished my mum would just f* off and die (this is said quite often) and then can't understand why he had wished it in the first place. If it's confusing/hurtful/hard and tiring for us, I wonder how he feels.

However, as he has got older he seems to be able to control his behaviour better (around friends etc) and it has been over a year (touch wood) since he has had to be picked up from school due to his behaviour, this used to happen at leat once a week.

Have you looked at any support groups? Have a read here www.adders.org/

Lea

i actually would be cautious with support groups. when i as younger i was orced to attend them, the idea of like helping like.

what i saw was behavioral copying and i dont think it was consious on the parts o the aspies, sometimes where one would wring his hands everyso often , another would pick up on this and copy it to thereown actions.

in adiion to aspie i was diagagnosed with adhd and put on ritlin. much as its a good control drug bear in mind that its based heavily off of speed and can have long term effects not desirable.

in terms of adolesence i would recomend findong out what interests they have and try to focus there energys in that regard leaving them to loat isnt a good method .

saddly im not much on memorys about what i did to deal with a lethal, (litterally) temper as a preteen, but ive mellowed out over years.