Family life

leaannep85

Hi everybody, ive never posted in this section before and not really sure what i expect in terms of magical answers, advice or slating of people just having a hard time at the moment and dont know where to turn.

i'm married with 3 children, twin sons and a toddler daughter. my twins have serious medical problems, chronic lung disease, Global Development Delay, Complex learning needs, serious learning disabilities, autism, speech problems, dairy allergies, lactose intolerances, exzema and they dont sleep so on sleeping medication as well as lots of other meds and 1 DS has serious behavioral issues at moment. they attend a special school which is brill for them. my daughter is going through the terrible twos at mo and copys her brothers which is resulting in her and my son having competions on who can hit their head against the wall the best at the moment (although my daughter hurts herself my son does not feel pain so does it for longer and harder then my DD)

i dont have much help as my husband has no family and my mum and dad are seperated -dad has bi-polar and cant look after himself so i need to help him too as he lives near me and my mum lives around 30 mins from me but is being tested for MS and is currently going blind so cant help me either.

i'm finding it really hard to cope at the moment, im depressed and have a bad back from having to carry my sons a lot so its not healing, ive got a specialist and just had an mri am on strong medication which doesnt help as much as i would like and am in pain a lot. im also depressed and have seen dr and they have gave me meds for this. this isnt helping my relationship with my hubby as i snap at him a lot, we dont get time away from the home together, argue and i cry all the time so im not suprised if he doesnt want to be with me.

ive referred myself to social services for support and recieved there assesments where they have wrote everything out but have said there is nothing they can do for me and wonder if this is correct? they said theywere not closing the case but theres nothing they can do and when my sons turn 8 they cud get a night away a month but thats 2 years away. they said to go bk to consultant for extra meds for the boys to get them to sleep but there on adult meds already and consultant last time i saw him told me i wud have to get used to it. because of there problems they cant be left alone as they dont understand about danger.

i just dont know what to do or where to turn as im struggling and falling apart more everyday, is there anybody else i can ask for help apart from social services?

purpletoenails

Hi there

Do you have a Home-Start scheme near to you? They are a voluntary service that can help you with a bit of extra support as long as you have one child under 5. You can refer yourself to them, or your doctor/health visitor or social worker can refer you. Have a look on their site (google home-start uk as I'm not allowed to post links yet) to see if there is one near you.

PT xx

Brighton_belle

Couldn't read and run OP - that sounds really really really tough!
The factyou are coping at all with all that is amazing and I dispair there is no obvious help for you so far.

I hope you get more suggestions from people better placed than me experince wise

steph7163

Hi Hun

Just wondered if there is a surestart centre near you that you could contact - our local ones provide a lot of support for families, ranging from playgroups to volunteers in your home, also you mentioned that your sons attend school - would it be worth getting in touch with them they may be able to put you in touch with support group etc ...
Hope you are able to sort something out soon hun

stephx

CuppaTea

The surestart and homestart ideas are great, i can recommend both. However you may be like me and live in a black spot for these sorts of services, homestart find it hard to get funding as the area is considered too wealthy, but its not really just out of poverty so gets overlooked. Surestart can't get a look in as they are too busy dealing with inner cities, less wealthy areas and just haven't got the funding to go into areas where i live. From my exp only they tend to be focused in larger towns and cities rather than smaller towns. But then i think my town in particular lacks all sorts of decent services, even somewhere to buy toddler tights in the middle of winter requires a 25 min car drive to asda. Since woolworths shut, we only have peacocks to buy kids clothes in and their ranges are minimal.

Anyway, i digress, i apologise as that isn't helpful to you. I'm sorry i can't really advise practically, but I can throughly recommend posting here for emotional support. Im sure more advice will be along shortly.

Best wishes OP.

shy-but-need-help

Not sure how it will help with the bigger picture but if you break it down into individual issues and address those individually, ask them to help with specific issues as it maybe no organisation can help with everything but different departments/organisations might each be able to help with specific issues.

One I picked up on is you mentioning your dad is bipolar and can't look after himself, that is quite a selfish approach from him baring in mind everything else you have going on in your life. Many people with bipolar can make the decision to make the effort to be "functional bi-polar", it is not an easy process and it most likely wouldn't be instantaneous but many of BP suffers can function in terms of looking after their own needs with the right medication, counselling and support. Is your dad pushing for a reassesment of his medications to find himself the most suitable ones for leading a functional life? or is he just going with the status quo and the assumption you will pick up the pieces (I know this sounds harsh but I have BP and I made the decision to be functional bipolar, the route to the most suitable combination of medication and therapies isn't a quick one but it is a possible route and in the long term it would help you as your childrens needs won't go away) It may be one avenue to explore. Also do you have any siblings who could help share his care if modifying his medication and therapies isn't an option? Could you contact his mental health team and tell them about the other issues in your life at present and tell them you are not the most suitable person to be his carer.

mumoftwo

Have you applied for Disability Living Allowance for your twins? With the extra bit of money you might be able to "employ" someone for a few hours a week to help you with them, so not all of the caring and pressure is on you alone.

pigpen

Do you have a KIDs near you? They offer support to families with children with disabilities.

Is there a local Autism group?

Have you spoken to the boys school? Surely there is someone there who could offer advice or a bit of guidance or support.

Have you tried charities such as banardos? They offer differing support in different areas so I'm not 100% certain they can help.. but it is worth a try.

As far as SS go.. write a list of the things you need to help you get by.. respite, appliances, reins, etc... they CAN help but they won't offer anything you have to say 'i need this to help my family' and they will do it.. if the person you speak to says no.. take it higher... you get nothing without a battle.

Do you get DLA for them? If not then apply!!! You can apply online.. it is a pain but worth it!

Have you applied for direct payments? These can be used to pay for respite which wil give you a break and some time with your daughter.

If you get DLA are you getting the tax credits for children with disabilities and carers allowance?

I'll come and edit if I think of anything else (need the loo so speedy typing!!)

Oh.. disability council at the main childrens centre (usually the one where they do hearing tests/physio etc).. give them a call..

shell_girl

The Learning Disability Helpline will be able to offer you advice and info about what services are available in your area, and what assesments you and your boys are entiled to. From the top of my head you should be entitled to a Carers assesment, and it sounds as if you should look in to DLA for your boys.

The issue is that most local authorities have four categories of 'need', and with current funding issues most have had to restrict their services to the top two (in some cases one) tiers of need. Unfortunately this means that many local authorities are having to say to people 'yes we recognise you have a need for services... but we cannot offer you those services'.

Call the LD helpline on 0808 808 1111 tomorrow, and ask for their support in challenging the local authority to provide you with more help.

jammie1

I have a son that sounds very similar he is 5. (I also have 2 daughters 2 years old and a 5 month old). We have had to research a lot of support ourselves. We also contacted the disability team within social services and the first person we saw said she couldn't do anything until he was 6 (year one) as there was just no services available, then she went on mat leave and was replaced. The new social worker came out to meet us as we our case was kept open but nothing was happening. He very quickly managed to organise a play scheme for two days a week in the school holidays and our son is being supported one on one there by Barnardos paid for by social services. So it might be worth asking to speak to a different person on the team. Our assessment came out high need due to my dh's disabilities too I am registered as his carer and also work.

During our own research we found that on a saturday morning there is an activity session at a community centre in the town 'pipa' and they can support children with disabilities there.
We also just happened to mention that we would like swimming lessons around his head teacher but the only one for children with special needs was on a sunday evening at 6.30pm! Not suitable for a child with a full week of school ahead of them. Anyway within 24 hours she had organised one on one swimming lessons with a swim teacher experienced with disabled children and had organised funding through something called 'me too' not sure if this is a local thing or not.

Are you in touch with other local parents in a similar position, one of the soft play centres near us has a sessions just for children with disabilities so their parents can get together too. I haven't actually made it to one as it happens to fall on a day I work after school.

Can your childrens school not point you in the direction of any help, my son is currently in main stream school with full time one on one support. Surely as a special school your school will have a great deal more experience that ours. I am also registered with our local carers resource and they have helped with advice, filling in DLA forms etc.

Not sure I have helped but we have found you need to keep asking everyone possible

Jacobs_Crackers

Hi Leanne, it sounds like you're having a really tough time at the moment.
You've already been given some really good advice, but another place you could possibly get support from is your local children's hospice. Many people have an incorrect picture in their minds that children's hospices are full of doom & gloom (being a hospice) but please believe me when I say they are beautiful & happy places with staff who are full of smiles or a shoulder to cry on when needed. Most, if not all hospices have a community team, which can support you at home, either while you are resident or allowing you to go out for the day. Otherwise, you may like your twins to stay at the hospice for a few days (with or without yourself) giving yourself a slightly longer break. To be accepted to the hospice service there would be a criteria they would need to meet, & the hospice would request from the GP & consultants supporting medical information. Have a look (if/when you get chance) at the Children's Hospice UK website - http://www.childhospice.org.uk/ for more information.
I have got no personal experience with having children with medical or physical disabilities, but have got professional experience & have seen first hand how hard life can sometimes get for families.
I wish you all the best & hope you are able to find the support you need & deserve.
JC.
x