DH disabled, (CMT) DS has LD and poss ASD, where to find support for DH..

[signandsay]

Hi, I'm more active in SN kids forum, but wondered if anyone here had any ideas to help my DH.

Basically he has X linked CMT, muscle wastage advancing but still walking, although now going for wheelchair assess, lots of falls, lots of pain and chronic fatigue.

DS (3yrs) has Mod LD and possible ASD, very active, big, strong and determined.

DH is feeling quite low and as he puts it 'like a crap dad' can't run round after DS and also finds signing to him difficult.

He says he shouldn't have had kids, (which really upsets me)

I would really like him to have contact with other dads in similar positions, (or heaven forbid see someone to talk about how he feels!) but he is being very 'bloke' about this and is unwilling to put feelers out,

Any ideas, or advice?

PS he is v 'techie' so online stuff he might
find do able.

many thanks

Have you got a Childrens Centre near you? Find out if they have special events for Fathers.

Hi, thanks for that, will see what they do, only things I have seen so far is dads with the kids and he can't do that, can't follow DS round in case he freaks out, or bites to say hello, (DS not DH!) and also other people's littlies are quite squashy if DL lands on one when he falls,

we have had SW assessment, (I am SW in previous life, so think the SW that came got a bit of a rude awakening )and hope he should get DP to 'support parenting role' (I am doing all other care needs) so maybe he could take support worker to group to keep eye on DS... Wonder if there is group for disabled parents maybe....

Someone mentioned disabled parents network...? will check back through threads and see what's there.

thanks, you have made me think.

I don't have any suggestions as such, just wanted to post a message of support.

Dh is disabled following a stroke 10 years ago. Luckily for us, his abilities and confidence have grown more over the years as he has learnt to cope with things and as the dcs have got older and a bit more independant. He can now take them out on his own and is learning ways of keeping them in line(!)

I think a support worker to your dh to 'aid/support his parenting' must be the way forward. How you access that though, I don't know!

Could Surestart be a help with a volunteer?

My dh is the same as yours and would never want to attend a support group or counselling either.

thanks for taking time to post, really appreciate it.

Hmm sure start... interesting idea, will look into that thanks

Got some Good news! DH got 4 hrs direct payments a week agreed today, result of Community care assessment.

we may have to pay half, depends on financial assessment, (hoping not!) but even so, good news

Can use for support worker to help DH with DS also for himself stuff too, (eg someone to take him to hydrotherapy and wait with him,in case he gets into diffs) we have lovely 19 yr old lad at our church (at local college) knows and 'gets' our DS, babysits for us occasionally and know he is desperate to learn to drive, so may use to employ him, then all benefit, DS gets to play with him (fun) broke lad gets his driving lessons paid for, DH (and I) get time.

Also gonna be sneaky...
have found local user led group looking at pain management, looking sfter self, dealing with feelings, etc etc, but as DH was IT bod before retirement, he might be more willing to get involved with them to give his 'IT expertease'... (as they are looking for that at the moment too)

might make him more willing to take that step.....

That all sounds very positive and getting your dh in to the user group by him giving them advice is a fab idea. He can use his skills and get to know them all.

Hope it all works out well.

Do you know about www.dppi.org.uk

they offer practical information. I havent had much to do with them for a few years so I dont know what they are up to now but its worth a look.

My OH has MS and our middle DS has mod LD and other issues.

OH is VERY good at doing all the tv, computor games type stuff that I hate doing. You dont have to be able to run around and play footie to be a good dad. Unfortuantely its one of the things that ignorant twonks pull out of the hat when talking about disabled parents.

Thanks, kinda nice to know someone else in same position, will go an have a look at dppi,
Yeah i tell him that we can find other male models to do active stuff with DS if that's what nec, as he is retired from work now actually has more time with DS than many men get, and DS although not very sociable / good with interaction clearly loves his dad loads.

thanks again chegirlshadabloodynuff

sign my OH spends so much more time with the kids now than when he was 'well'.

When our big kids were little he was either working or out with his brothers (he was pretty young, in his defence).

Now he is home every weekend, all weekend. He still works but its better for him to work in the evening so he has been at home with our DS3 since he was a baby. He is very hands on, I hardly ever change a nappy these days .

Its not all brilliant obviously. But I know my OH is a really good, loving dad with lots of time for his children. He is also MUCH better than I am at doing things at a child's pace i.e. not rushing about like a loon trying to fit everything in.

It would be nice to be able to go to theme parks etc but OH will not even think about using a scooter so thats out. But there is more to life than Alton Towers.

Know what you mean re scooter, up to now we have not been allowed to say the word wheelchair, ( it is called a 'w' if we have to mention one)

but he is going for w assessment soon, (well he is thinking about taking to the dr who can make the referral... ) but at least that is a development.