Sort of about me not coping and things...Long..Sorry.

[CKelpie]

I have a 9 yr old who has dyslexia, possible dyspraxia, borderline ADHD according to the specialist but worse according to his teacher.
He has poor concentration, no concept of cause and effect and is very immature for his age.

I have to constantly remind him about things he needs to do like brush his teeth, wash his face, do his trouser zip up and so on.

I let him cook his own readybrek in the morning but I measure out the powder and milk in little containers and I have shown him how to use the microwave such as which buttons to press and not putting anything in except the bowl etc. I have written the cooking instructions out very simply for him and yet unless I am there telling him to do it, he will just eat it raw! The list of things like this is endless.

I posted the other day about him helping himself to sweeties from the supermarket - he left the wrapper on the floor so we took it to the counter to pay. I was shocked and crying about it that night when I posted.

But tonight is the real shocker. I was sorting out a wash and checking his pockets and I found a wrapper for a calpol sachet. Alarm bells went off and I went to check the drawer where I keep the medicines and found that he had been helping himself to calpol fastmelts. I have been on the phone to the NHS tonight to see if he needs to go up to the hospital and they have worked it out that what he has taken is within the max for a 24 hour period but from what he tells me he has been eating them over a few days so they think he is fine. They also checked against his weight. I burst into tears on the phone when she told me that - I was so scared he had done something serious.

The thing is, he keeps doing these ridiculous and stupid things and when I ask 'why?' or 'what were you thinking?' all he can say is 'I don't know'. He makes me want to scream, quite often I do.

The nurse was asking why he might want to harm himself and I had to explain that suicide wouldn't even occur to him. He just doesn't think at all about what he is doing. I once bought him a watch and he was really chuffed with it, he took it up to his room and cut the straps off.

She suggested I make an appointment with the doctor tommorrow, to get him checked out but then she said she wants me to talk to the doctor about getting some help with him. I told her he is getting help at school with extra funding and she said I should ask about what help is available to me. I am a bit stunned by that. I don't know what to think. I think she is saying I might not be coping with him. My mother said as much at christmas, she thinks I need to take the pressure off myself. She said I can't keep doing it on my own.

I thought I was doing all right but it seems I can't even keep up the facade any more and I'm really, really scared about what is going to happen.

I don't want hugs please but I really need some words of wisdom and can anyone tell me what sort of help she is talking about? Do they think I can't manage? does anyone else's dc sound like mine? What does he need?

And the question I really didn't want to ask is are we starting down the route of them taking him away from me? I couldn't cope with that, as much as he makes me scream in frustration and cry at nights I absolutely can't lose him.

O babe, I am so sorry that you are having such a hard time.

You are doing the classic mummy thing of thinking you must be failing because you need help. But I am amazed how you cope without help. You can clearly not let him out of your sight literally for seconds, you must be permanently exhausted. The Calpol thing is a wake up call, the stuff is dangerous.

Maybe it is time you stop keeping up the facade. I had to recently for very different and irrelevant (here) reasons and had to let some friends 'in' and it was very scary but also good.

And you don't have to love or like your son any less because he needs help and you need help. It is not his fault, nor is it yours.

Can your mum help? Can she have him a day or an afternoon a week so you can just breath?

And it does seem to me that he is not particularly borderline in something. So maybe you need to find the energy to push for further assessment.

More than anything try to be kind to yourself, you deserve it, you have come a long way on your own.

xx

The Calpol thing has scared me badly, I was on hold for ages, I must have been tensing a lot because my neck and shoulders are aching now.

My mum lives abroad but she helps out when she can with holidays etc.

I work full time so it's not like we don't get a break from each other - I'm just worried about what 'help' might entail. Do they think he is at risk because he had access to the medicine tub?

I have had him assessed for various aspects of his behaviour and development - the ADHD is to be assessed again in a few months time, I wouldn't let the specialist discharge him last time. He is currently on the waiting list for occupational therapy.

His block of funding at school is due to end in July so I plan to ask for more at parents evening. I'm worried he will leave school without choices.

Thank you for your kind words.

CKelpie, a few personal thoughts. I'd agree with madmouse that your ds is not borderline. Don't know what they've missed, but these behaviours from him are a clear sign that he needs specialist help and support for himself. Somehow the 'danger' and self-care bits of his brain are just not connecting up to the 'common sense' bit.

The probability of anyone taking him away from you must be close to zero, from what you've written. Otherwise almost every child in the UK would be in care by the time they're three, as almost all of them manage to do stupidly dangerous things when we least expect it. If you were deliberately giving him an overdose of medicine, yes. Him finding it and doing this for the first time to your knowledge, well that's nothing more than a 'phew, thank goodness he has a sensible mum who knew it was dangerous and has stopped it!" moment.

Him and you needing extra help isn't any sort of failure on your part. He's growing up, and that means there's lots more things for him to handle. This is the point where extra needs become clear.

Heck, I know how much help I need with things, and though I have to pay privately or rely on family and friends, it's made a big, big difference to my life as a person with an ASD, dyspraxia, arthritis etc.

What are his social skills like, can I ask? How does he cope with sudden unexpected visits or surprise chaotic social gatherings or parties etc? What are his hobbies and interests?

Sorry thantyour having bad time, I dont have any practical advice (I always seem to find myself saying that!) but I just wanted to send you some virtual hugs.

You ask what type of support the nurse meant? Well what would help the most? Discussing how best to manage the behaviour that worries you with experienced others or experts? Respite? clubs for ds? Time for you? Those are the sort of things that would help me ( my son is 9 with ASD/ADHD/MLD and needs 24/7 second by second care also - he is very impulsive and also takes chocolate and drops the wrapper Hansel and Gretal style!). You will probably need to look for support yourself - although you could speak to the gp about official support. Respite would need to come through ss.
I wonder if a support group( eg ADHD)would help - as sometimes just being with other parents with similar concerns is supportive. They often meet monthly. Some have a telephone support line if getting out is difficult. Some run tailored courses or fun activities for the kids.
My son (no organisational skills yet) has several picture sequence charts to remind him in which order to do things like wash his hands (including switch off tap!), get ready for school, have a bath. Perhaps a make breakfast sequence would help your son. Social stories can be helpful too.
Actually you sound like you are managing very well. Hopefully taking ds to the gp will reinforce how dangerous taking fastmelts willynilly is. We have recently had a kitchen flood, and did not immediatly replace the cuboard locks on the new bits and ds has been helping himself to all sorts including (my) throat tablets !

Thanks for your replies, I am just in from work so sorry for not replying sooner. I have an appointment with the doctor shortly.

His is ok with changes to our routine, he seems to be able to take them in his stride eg I had to arrange alternative holiday care for him at half term - it was new and different and he absolutely loved it.
I think he struggles a bit socially - he doesn't 'get' the rules sometimes and wants to adapt it to his own version. He cheats a bit at games

If he sees his friends out side of school and they say Hi sometimes I have to prompt him to respond. He seems unsure of that situation.

I will see what the doctor says about the whole thing. And will have a look for support groups and things.
I have created morning and bedtime lists for him with some pictures but any further ideas with that would be useful.

Must dash.

His liver is not inflamed nor tender and the DR also checked his weight against the max dose.

She looked back in his records and it seems he was discharged from the specialist re the adhd but was referred to the community paediatrician (sp?).
She mentioned ss at one point but I confess, I moved the conversation on from there. I feel a fear of having them involved - stigma I guess. But also I know my ex would use it against me.

Amber I think I need to make a list of specific examples to show what exactly his behaviour is like. I think generalising has not given the full picture so far.

Magso The picture sequence charts sound like an excellent idea. I will have a look for more info and also for some kind of support group - I think the Dr is going to send me some details too.

Frasersmum, Thank you.

Well, that's a relief that the medicine doesn't seem to have done him any harm. And please don't beat yourself up about it. Accidents do happen. And now you will know that he can't be trusted around medicine so you will be able to be extra careful.

My ds got hold of my blood pressure medicine when he was 5. I found a half-nibbled beta blocker on the floor and had no idea how many he had taken (fortunately only the one). Went rushing into his school in a dreadful state to find out exactly what he'd done.

It is a relief Cory, I am gobsmacked that he took the tablets, he does know that medicine can be dangerous - I mean I have said it to him before.
He likes the taste and in the past has asked for more but I explained why he couldn't. I thought it had sunk in.

I got the Dr to lay it on heavy with him too so he doesn't think it is just me. (A little background - in the past his father has told him that he doesn't have to do as I tell him - undermining me basically) She told him that he was safe and fine but she also told him he could have died if he had eaten more.

Thank goodness he is fine! Sounds like the GP did a good job of telling him straight!

Hi there

my 9 year old son has dyslexia and dcd (very similar to dyspraxia) you are not alone on this, my son also has to be reminded of things continuously and does the craziest of things at times, he can't read other people emotions so often doesn't know when a warning is being given, he has no road sense and often walks out in front of cars of behind cars that are reversing, the list goes on, anyway my son gets loads of help, he see an occupational therapist who helps him cope with everyday life, she is heaven sent, he also see a language therapist who helps understand the world and what's going on around him, he get extra help in class and is always accompanied one on one when taking part in school outing and trips. i feel for you but my advice is to take all the help you can get, there is no shame in this, all of these people are there to help you and your son have easier lives, do not feel guilty, you are not to blame, you can only do your best and you do not have eyes in the back of your head, don't give yourself a hard time, your son will be fine and one day you'll repeat this episode back to him and you both will have a giggle about it.

He did have speech therapy as a baby Leamac but it was roughly a 10 week course. I will ask about a language therapist as I think his understanding of the world around him is hard come by. Thank you for that tip.
I can relate to the cars thing - I hardly let him out on his own and worry all the time. I feel like he ought to have a taste of independance though so force myself.
Ours is a private road and at the bottom it is a very quiet road along to the local play park and sports centre.

He has a watch that my mother got from the RNID, it buzzes instead of beeps for an alarm so he can't ignore it.

I have asked for help, both on here and from my GP and I feel loads better for it. I am going to see about local groups as I really want to talk to people who are dealing with the same problems. I need to learn from them/you and I think it will help ds to understand his struggles too.

I told my mother tonight about his calpol event - she says my brother did something similar as a baby with aspirin but was also ok - he doesn't have any special needs so was just being explorative.