Trying to cope with child with ASD and help disabled parent...

[runikka]

Good evening

I havent posted for a while but wondered if anyone is in a similar situation.

I live with my husband and two beautiful children, including one who has been diagnosed with autism and non-verbal. Both our children are under four. We both work full time and have a fair old journey (50 mile round trip) every day to work. We do this on limited sleep, our ds has frequent night waking at present. Life is pretty stressful and full on.

To add to this equation, my mum has MS and her mobility is deteriorating rapidly. She falls all the time and is now struggling to keep her house and herself in order. She lives about 20 miles in the opposite direction to where I work. She lives in a small, extremely cluttered house which my little boy has taken a severe disliking to. We can just about get him to go in the house but to leave our side, forget it! It is not really safe for toddlers anyway because my mum collects every type of nicknack imaginable and as an adult its hard not to knock something flying...try letting our two year old daughter loose lol
Basically, it is almost impossible for me to spend enough time with her to help her sort out what she needs too and keep the children safe.

I would love for her to move closer but she likes where she lives and I respect that. Her mobility could be improved if she cleared the crap to give space for grab rails/wheelchair access/walking frame but she insists its okay. We find it hard not to trip over in there and she can hardly lift her feet and falls on average once a day. However, again this is what she wants.

I just dont know what to do. I cannot cut my working hours to help her because we have a big mortgage. We have also recently taken on a nanny to look after the children whilst I work because this was the best option for our little boy to be able to develop a routine. We are also trying to fund ABA and with every scrap of income it is a major stretch. She has two carers but is not happy with what they do. She only sees things from her perspective and can be quite a difficult person to get along with and there seems to be no compromise that she's happy with...this not making things any easier.

I am an only child and my nan/uncle seem to have distanced themselves from my mum in the last few years. My parents are divorced and my dad et family are always willing to talk to me about this but they cannot help because they do not get along.
My dh and I are still trying to come to terms with our son's diagnosis and I feel I really need to be able to concentrate on my own small family now but cannot just abandon my mum but what do you do when it is all so one-sided. She wants help but nothing I can offer is good enough

Bump

what a difficult situation. have you had a frank discussion with your mum about what she wants from you and what you can give? i think you can only point out to her the ways that you can help and be ready for when she wants to accept the help you can give.

I wonder if her GP is able to refer her to the falls clinic at the hospital? If they're aware of the situation, they might be able to put pressure on social services to lend a hand? Really not sure. No way should you be having to handle all this pressure on you at the moment - there needs to be some help. Would the MS Society helpline be able to help in any way?

Sometimes the kindest and most loving thing is to say "no, I can't cope, but this is what we can put in place to help you instead". If your mum can't respect that, then that is her choice. It's reasonable for you to need to care for yourself and your own family too. Very reasonable indeed, and very loving. Don't doubt that.

''She only sees things from her perspective and can be quite a difficult person to get along with and there seems to be no compromise that she's happy with...this not making things any easier. "

That can be common in many older people - it's not called a second childhood for no reason. She is not being selfish any more than a 2 year old is capable of being selfish but the demands are too much for any person to meet. You just have to be as honest as you can about how much you can to help and try to get her to understand you have no power to do any more however much you want to. What do the carers say about all the clutter ? Can you ask them to find out if there would be any more help to get a proper clear out for the sake of her safety ?

sorry cyberseraphim I disagree. unless I am missing something (ie beginning dementia) she is very well capable of being selfish

runnika my mil was a bit like this (she is now in a nursing home back in Holland). when she lived on her own her house was placed so that she could only go shopping by car .we asked her to get on the waiting list for a care home/sheltered home she liked so that when she needed it it would be available. we warned her that with us in the Uk we would not be able to jump in. she refused, making all sorts of excuses, like I can't afford it (nonsense in Holland it is all means tested)and when I asked what she would do when she could no longer drive she answered 'perish' which made me feel she was manipulating dh.

then of course she did break her hip, became forgetful and with lots of support from social services and the like had to chose between to nursing homes. all she said was 'I need my son, he needs to make the decisions'.

I love her to bits. she is a fab mil and having lost my mum 11 years ago I am close to her. But this just was not necessary.

I would say treat her like an adult. outline what you can do and if not to her liking, sorry...And if she criticises what you do, don't do it. Your kids need you too!

Many thanks for your replies. It is much appreciated.

My mum's MS nurse did arrange for the occupational therapist to visit to discuss ways to reduce the number of falls, walking aids, how to get up from chairs, not overdoing it. The problem is my mum is also hard of hearing and gets very confused following instruction but doesn't say so at the time. She also wont give in to the fact that she is limited to what she can do and will still attempt to get on steps to put up pictures etc because she wants it done straight away and not when I can get there to do it.

Through direct payments she has recently been able to take on someone to help with the housework for a few hours a week but she expects so much from them in such little time. I really feel she needs a full time carer or at least to be in a warden assisted place but she adament she likes her house and would prefer to struggle a little and stay there.

It's not only her struggling though ... I don't know how hard or easy it would be for you to point this out to her...

Awful situation. Just exactly what you don't need

Excellent advice to treat her like an adult. Absolutely right. If you begin (carry on!) treating her like a child things will NOT improve!

I know the 'reeling from diagnosis' feeling very well. Totally useless sypathy coming your way .....

Have you considered doing this as an aibu? You might get extra good advice?

have you asked the pct for home an or buy shopping, she will be entitled to it as it sounds like she needs the help,a carer would be ok to come in a few hours each day, you'll have to explain you cant come as often as you would like what with travel 2 children and one on the special needs registrar, i have a son with asd,and i have a father with parkinsons but his wife looks after him so i go every two weeks either on my own or with my son, i know its difficult, a carer seems to be your only asnwer as you don't really want to move her to supported lodgings which isn't that pleasant sometimes. there are lots of agencies,
one i used for my grannie was auntjessicacares, but there are cheaper ones..

hi runnika,ps coming to terms with a diagnosis is difficult it took me sometime contact-a-family
are great as they have parties and outings and coffee mornings and autism focus groups.
treatingautism.com make families aware of recovering children through biomedical treatment,which works along side programs like aba. it is a nutritional based way of detoxing and clearing up the leaky gut, and implementing
a gluten and casein free diet.
look up several books
at the www.nutricentre.com [book shop]
for
recovered children by stephen edelson md
children with starving brains by dr.jacqueline mccandless
dylan's story [www.mothernecessity.com]
there is another great book enyzmes for autism
by karen de felice

and the american site where you can view videos of recovered children at the dan conference 2004/5 www.autism.com
biomedical grants are available to parents from caudwell children.com also klike aba is the sonrise program at www.autismcenterofamerica.com