Mumsnet Talk

Hello Mumsnetters,
I am a disabled parent with a degenerative neurological condition. I have a healthy 19 month old child. My wife works. I get DLA medium care, high mobility. The condition and the drugs leave me wiped out about 1400hrs. My wife does not get back from work until 1830hrs. Does anyone have any idea about what help is available to me and how to go about obtaining it? Is there anyone in the same boat.

Kind regards,

D.

Might be worth getting in touch with your local council and the adult social care team. I'm just going through the process of getting a care package in place before the baby arrives.
They can assign you a social worker and then give you an assessment to see if you're eligible for some help and if you aren't they can point you in the right direction.

The council can be a bit tricky (i.e helpline not that helpful) but I'd recommend getting in touch with the disabled parents network as they are brill, very friendly and have masses of info. They can even help you battle the council if they are being difficult.

I was a bit hesitant especially the whole 'social services, social workers' thing (images of me being a crap parent before even the baby is born!) but they were really good and have solved a lot of problems.

Is that any good for you?
Jen

Jen,
Thanks for the response. I'm really hung up on the social services becoming involved you hear such horror stories! I'll give the disabled parents network a call.
I've greatly reduced my medications on the quite just to keep going, but how long I'm able to sustain the damage is unknown.
If you do not mind me asking are there any similarities between our situations?

Kind regards,

D.

I have rheumatoid arthritis and fibromyalgia. I'm going to be a parent in a few weeks time and was medically retired last summer. I came off the majority of meds over a year ago as they would cause problems with the foetus. Not being on meds meant it effected my ability to work but becoming a parent was more important so I am reliant on my husband to earn the money. I get low rate care and high rate mobility on DLA.

I was worried about involving social services because of the horror stories and the 'stigma'. But it is classed as adult social care not child social care (the part of the council where they can take the child away). My MW wanted to write in my maternity notes that social services are involved but I made sure she wrote that a care package was in place with adult social care (I was worried once I had the baby an over enthusiastic medical person would get the wrong end of the stick and not let me bring the baby home if she wrote just SS).

When they show up to do the assessment the social worker doesn't show up in a van with 'assessing a crap parent' on the side either!

Hope you've managed to have a chat with the DPN as they are helpful and will send you lots of info.

Take care
Jen

HI, what's this Disabled persons network? It sounds useful

Hi all.

I have decided not to go down the getting a carer in route, just personal choice. I have some interesting thoughts though that might help.

DPN is good there are many options out there, it is finding them.

I have Juvenile arthritis by the way in case any one is wondering and husband has Psoriatic arthritis. Most of me is plastic, the stuff that isn't is going to be and the things that are when I was 12 and 16 are due for serious upgrades!

Here are some suggestions:

Canine Partners- What a god send! They train highly trained dogs to open washing machine, load it up and shut the door, even press start button with nose. My dog can do chip and pin, withdraw money for me at ATM machines, she helps me get my baby son undressed, she helps me retrieve his dropped toys, she will go and get a book of the shelf for him if I am sat with him on my lap. She can leg it downstairs to get a ringing phone and have it back to me before answer phone machine triggers. These dogs are just fantastic and without mine looking after my son would have been harder work.
www.caninepartners.org.uk/

Second option, Playschool, don't know how old your child is but these are excellent, a good two or three hours of fun fun fun tires them out ready for a good long sleep in the afternoon! They are often ran in village/town halls, community centres. They are smaller than nurseries and have a more one to one feel for your child.

Nurseries, by the time your child reaches three you are entitled to some free hours of nursery time, can't remember how many, think it is something like 15 hours. Might not be so don't quote me, all nursery and Playschool offer a fantastic way of your child meeting friends, you don't have to do the physical work and in fact you could go home and have a nice nap.

Baby bounce and rhyme at Libraries, go on go for it! This exhausts little toddlers or babies out nicely too, you meet people, it involves no more than sitting on a chair, they don't expect you to sit on the floor, chairs are there for every one, you rattle some musical instruments, sing some funny songs. My son was always fast asleep for at least an hour afterwards!

If you have difficulties using child rearing equipment then there are options:

REMAP: - an organisation of old boy engineers who happily come in and convert something you already have to be more useable by you so they addapted a mothercare cot for us and it is fantastic.
www.remap.org.uk/

Or DPN who offer a lot of advice on specialist equipment for disabled parents in child care. However I don't want to buy a £2000 cot when I can go to Mothercare and buy a £50 one and get REMAP to alter it for free!
www.disabledparentsnetwork.org.uk/

I am a Psychologist and was disgusted at the lack of professional input or knowledge available for disabled parents, about how to go about every day child rearing tasks. I am trying to help other disabled parents and change that for mums and dads to be. I have a blog with ideas such as the above and more. I am supposed to be setting up a website where other disabled parents can swap ideas, sell their baby equipment they found useful to other disabled parents etc. At the moment it is just a blog with info and my journey:

disabledpositiveparent.blogspot.com/

Above all I try to promote that any parent who gives their child time, reading to him,cuddling him,singing silly songs to him is far more important to a child's development than filling your child's diary with social events or running around like a headless chicken. In the 60s and 70s babies didn't have Karate classes to attend! We just had Playschool and that did us, the rest of the time was play nicely with your toys and my mother gave us set time where she would read and teach us to read and we loved it.

Failing all that get a Baby Einstine DVD from Amazon, they are cheap on there at the moment, they keep a young child transfixed and this means you can sit down with a cup of coffee!

Baby Einstine dvd from Amazon: www.amazon.co.uk/Baby-Einstein-Mozart-Music-Festival/dp/B0000934BJ/ref=sr_1_1?s=dvd&ie=UTF8&qid=1321529041&sr=1-1

SunnyCarrie