now both dcs are SN... hard to cope

[cariboo]

Some of you know that my dd(8) was diagnosed with frontal lobe epilepsy last month & that ds(5) has been having severe behavioral problems for about a year. Diagnosis probably ADHD & so he has been having psychotherapy once a week more or less since last spring. No improvement at all so far. I'm so desperate from his behavior (think Donny in The Wild Thornberrys) plus the side effects that dd's drugs have had on her behavior that I had my 1st panic attack today after 4 yrs of being free of them. I'm seeing ds' psych on Tuesday & am now determined that he be given Ritalin. I just can't cope with any more atm. I'm terrified of breaking under the strain - it ISN'T an option! - how can I keep myself sane? Advice pls

Goodness, you need a large cup of tea/coffee and some good friends to talk to, I'd think? Can send virtual cuppa.. and there's lots of people here to listen. You're doing the right thing by asking for help for yourself. Sounds like you could do with some respite care. Has anyone suggested some? Definitely worth going to GP with a mobile phone short video of behaviour at its worst and explaining that you're absolutely not coping and need help right now. If they think it's not important, they'll probably wait for bloomin' months. Others may have practical ideas and more facts to hand...

hi is it neuro logical disorder.....?
my son has developmental delay and mild autism, we got help with behaviour and cognitive skills etc doing a dan diet which is a biomedical intervention through supplements. even with seizures this can be helped
look up treatingautism.com
it doesnt just help autism it helps all neuro disoders, that's why my son is on it.
youdo it with a dan doctor {defeat autism now!}
you could begin by getting a really good multi vitamin like kirkmans super nu-thera in capsules or liquid fish oils omega 3 like nordic naturals or eskimo or any other with no sugar etc.,
don't buy it in boots as they all have sugar or addictives, buy it from the nutri centre at www.the nutricentre.com
ritalin can help but its not very good and shorten life spean please look up these books
recovering autistic children by dr bernard rimland isbn 0-9740360-1-3and conquering autism reclaiming your child through natural therapies by spephen b. edelson isbn 0-7582-0184-2 the dan does work thir official web site in the uk is the one above but the one below is america where you can do an atec test on your child please see www.autism.com
there are low therapies such a reflexology from your local carers centre you should join....

p.s. the books can be bought at the nutri centre as well see the phone number on the web site....

Both of my children have autism and we have come through a LOT to get where we are today (A pair of bloody FAB kids!! ) it is hard.

I can't tell you how to get through it, I can only tell you how I coped (and cope!) and hope that maybe something is of use to you. (either because you agree with it or because it is so clearly wrong for you that you realise you'll be very happy by doing the exact opposite!) That's why I am using 'I' instead of 'you'.

1 - sense of humour - I HAVE to find something to laugh at about it, that does more than any other thing to keep me sane!

2 - keep telling myself that my role is to help them, that they are the people who have the disability and my focus is on supporting them, not on thinking about myself. Now before you think "What a martyr" It is in MY best interests to do that because it helps me to not get stuck in the 'oh poor me what a tough life what a terrible hand I have been dealt' iyswim. and to just concentrate on meeting their needs, instead of bogging myself down with how tough it is. Of course I have my moments - and I normally share them on here and bore you lot to death! but I pick myself up and give myself a shake and refocus.

3 - research! I seek out info on autism all the time. I seek to become an expert! I seek out any things that might help, and I try them. It makes me feel like I am doing something.

4 - admit when it is hard and seek help, support and a shoulder to cry on. There is NO shame in saying "help" if it gets too much. And it is FAR better to say "i am going to crack" than to keep it in until I do!

5 - I remember that I am only human.

Hi there. My DS was diagnosed ASD at age 4 and I can remember the terrible pre-diagnosis times clearly (3.5 yeras ago).

You need lots of support at this time, have you had any contact with the carers centre? They're very helpful in my area (West Lancs) or are there any local support groups which you could attend?

I find that contact with others in a similar position helps me to maintain my sanity, and there's usually a few people who have been through the same issues and can give you advice.

Remember, the situation WILL get better!

Hi, Brilliant advice from Hecate! My ds des not have autism but does have challenging behaviour (angelman syndrome), number 4 is probably the hardest but also the most important. No advice sorry, just letting you know you are not alone in feeling the way you do. Hope things work out. x

great post from hecate
everyone on this board is more or less in the same boat, raising a child with special needs is f*cking hard, raising two or more is - I can't imagine, I only have one (with autism).
you cope because you can.

There is a very cheesy saying that I focus on when I am really struggling and in danger of wallowing in self-pity to the point of not being able to do anything else
something along the lines of 'my child chose me because I can do this, because I am the best person in the world to look after him'.

i understand how hard it is, DS1 (16y) is ADHD and it has been sooooo hard, some days were worse than others - but TBH none were 'easy', DS2 has problems of his own too, DS4 is going thru tests, and DS5 is autistic but only 2y atm, so not that horrendous yet! and at least 2 of them are coeliac too... Im not trying to 'outdo' you, i just want you to know that you are not alone.

Eventually the one thought that kept me sane and that i clung on to was "this is NOT personal, this is how HE IS" I think the worst years were when he was 8y, i really could have either punched him hard but i didnt i hasten to add! or given him away, which i didnt do either - but now he is a fabby chap to be with now hes come thru 'the other side'.

the only other life saver I have is something that I look forward to EVERYday, wether it be a jigsaw, a magazine (bit expensive) a book, a soap on telly (tape it if need be). MAKE SURE you get YOUR 30mins that you can look forward to, whatever it happens to be. so even at the worst point during the day, you can grit your teeth and look forward to 'your reward' because you are a good mum, you must be otherwise you wouldnt care, or be asking for help. And a slightly bigger treat once a week: going shopping on your own, bubbly bath with candles, film and chocs, curry night! again whatever... so that when the daily treat looks like its not enough tho it will do for the time being, the weekly treat will still be there - and dont be fobbed off thinking, ahh well maybe I'll do it next week... YOU have been a good mum all week and YOU DESERVE IT!

Like others have said, it will get easier, and you will be a stronger person for it. A lesser person would not have coped so well, and your children are lucky to have you.

sorry to ramble {{{HUGS}}} for your journey.

Hi Cariboo, I too only have one sn child ( ASD and ADHD)! We have to wear so many extra hats as sn parents ( mum+ advocate+ sn tutor+ researcher+ therapist+ educator+ whipping post!+ ++) Tipsy is right it will get easier with time! It may not help to know but I found supporting Ds at age 5 and fitting in with school (with its expectations, over excitable busy enviroment and lack of support) particularly difficult!
Ds is a cross between Donny, Pippy Longstocking and Tiger (Poo), and keeping him safe never mind out of trouble has been a challenge!! Ds likes all these charactors!! Ds responded well to eskimo oil (from age 3) and still needs this so I would second trying similar if you havent already. Support groups can be helpful but can be hard to get to with younger children- some have telephone support which suited me better and frankly were a lifeline to me at times.
How to stay sane - (I think I just am!) - Yes the sense of humour helps but I think for me getting some time away fron ds was essential and a short spell at work doing something that I could do well kept my head above water!!My other way of coping was ( like Hectate) to get as much knowledge as I could to help me support my child.

As far as medication is concerned well if you have tried all the nonmedical interventions (behaviour modification, oil and diet) and you still really fear for your child then why not. I know that many feel strongly about Ritalin but for some children it slows them down and by giving a window in which to learn to think before acting can be a literal lifesaver for the child. The statistics for longterm results with medical and behavioural support (as opposed to non medical only) show that it is worth serious consideration. Ds has responded well to medication although it took a while to find a helpful brand and presentation. He is now 9 and can be a real sweety.
Would you like a list of books I found helpful?((Hugs)) Magso

You know, I am hugely sceptical about the value of psychotherapy for ASD and related problems such as ADHD. Lots of psychiatrists have no idea at all about these conditions, and look for social causes when they are in fact, a brain dysfunction or difference, like epilepsy. I suspect your son would be better with behavioural support, and possibly medication, not psychotherapy.

Mabanana I would agree! Although I don't quite know the difference!
I would say the single most helpful thing for ds was medication! Without it behavioural modification techniques (from books)would have had less (any?) effect. Actually medication affects lots of other things - oddly ds fine motor and motor planning skills improve too! Actually it took a while but it was lovely to see him developing listening skills and impulse control- the first time I saw him pull a punch Wow!!

Well said Mabanana! I see it all the time round here as we live in the "home of psychotherapy" where Freud used to live. Not saying that it never has a role as I think it can be very useful in some situations for some conditions but NOT this situation.

P.S. I've been to a few conferences etc at The Tavistock and more than once I've seen something like "mother depressed, child's behaviour deteriorating" and you can see what conclusion they draw from THAT, but they should look at it the other way round, "child's behaviour deteriorating, mother depressed", sounds different doesn't it?

Depression is a normal reaction to upsetting events (child not developing as expected). Do these Freudian dinosaours really expect parents to throw party and crack open the champagne when they see signs of developmental disorder ? Probably they themselves could not even cope with their darling dc not fluffing up the towels after washing their hands. I couldn't stay at a conference like that !

Thanks for all the support. I haven't been on MN since my OP because I'm struggling with myself. It's been suggested (rather firmly) that I go into a clinic for some "rest". I'm resisting because, although I'm not a very good mother atm, I'm still my dc's mother & I can't abandon them by going into hospital. As dh said, "it's not as if you're physically ill" (actually he said running a temp). And the dc know that mummy is not actually ill. Just bad-tempered, sad, unresponsive & tired.

I saw ds' psych yesterday & she's suggested we try him on ritalin. He had 5mg this morning & mg at lunch. He's still at school so I don't yet know if it's had any effect; positive, negative or none at all.

My closest friend who, bless her heart, has never suffered from depression or anxiety, gave me a stern talking-to yesterday. She said I'm the strongest one in my family & I've got to pull myself together for everyone's sake. This is true. I just don't know if it's possible right now. Is it better for me to be away from the children for awhile & hopefully get better or stay at home but have them terrified by my random fits of anger, sadness, etc.?

Dear Cariboo, I really feel for you and hope you're feeling a bit better soon. I've no idea whether it's better for you to stay home or to seek help elsewhere, but hopefully my post will bump you so someone more knowledgeable will answer.

Oh cariboo im so sorry i really didnt realise that you were in such a 'place', im sure that your friend is lovely and loves you to bits - but its really NOT A CASE of 'pull-yourself-together-ness'! Im certain that if it were that simple, then you would have 'done it' by now {HUGS}

This kind of clinical depression needs professional help, and i have to argue with your DH, you do in fact have an illness, although one that is not bacteria based, it is an illness and you do need help. You need to get better to help yourself and your children. I really feel that if rest place is being offered, it would be good for the family and especially for you, to get back on your feet. Your children will be well taken care of, and you are NOT abandoning them, they need their mum to be well to take care of them like I know you would want to.

take care, {{{HUGS}}} for your journey XXX