Help. Disabled Mom struggling looking after child

I know there's quite a few people on here who have a lot of different knowledge and experience so i'm hoping I might be able to get some help and/or advice please?

I'm in the process of trying to sort out some child care and if I do that, it'll certainly help a lot. But, as a disabled mom i've struggled but i'm now getting to the point where i'm finding it almost impossible to manage.

What concerns me most is the well-being of my little one and i'm acutely aware that if I could, I would be doing a lot more than I am doing. However, a part of me is very reluctant to raise my concerns with anyone 'official' because what would happen if someone decides that I can't actually care for my little one properly? I'm worried that I will be deemed a bad mother and little one considered 'at risk'.

Does anyone have any experience of this sort of thing?

I'm probably a bit over protective in some ways, I can't bear the though of little one being out of my sight, I even have a night light on constantly so that I can see him when he's asleep. This is probably sounding a bit mixed up, sorry. Basically I know I need help, I can't physically manage, but i'm frightened of being totally open and honest with my gp and health visitor. When I was talking to the lady on the phone who was filling the DLA form in for me I told her that I can't really say how bad things are because I have a young child and she said that they don't have anything to do with social services or anything like that, is that true?

I know there's quite a few people on here who have a lot of different knowledge and experience so i'm hoping I might be able to get some help and/or advice please?

Hi Bonny!

I'm in the process of trying to sort out some child care and if I do that, it'll certainly help a lot. But, as a disabled mom i've struggled but i'm now getting to the point where i'm finding it almost impossible to manage.

 

What concerns me most is the well-being of my little one and i'm acutely aware that if I could, I would be doing a lot more than I am doing. However, a part of me is very reluctant to raise my concerns with anyone 'official' because what would happen if someone decides that I can't actually care for my little one properly? I'm worried that I will be deemed a bad mother and little one considered 'at risk'.

Firstly, what is it you're doing, and how does it affect your ability to care for little one? Secondly, what would make you think that you weren't caring well for little one?

Does anyone have any experience of this sort of thing?

Pretty certain some will! How old is little one by the way?

I'm probably a bit over protective in some ways, I can't bear the though of little one being out of my sight, I even have a night light on constantly so that I can see him when he's asleep.

Thats not unusual; I'm still the same with my 14 year old as well as my 3 year old! You're just a parent; it's what we do!

This is probably sounding a bit mixed up, sorry. Basically I know I need help, I can't physically manage, but i'm frightened of being totally open and honest with my gp and health visitor. When I was talking to the lady on the phone who was filling the DLA form in for me I told her that I can't really say how bad things are because I have a young child and she said that they don't have anything to do with social services or anything like that, is that true?

Now we get to the bit you need to know about love. The DLA unit in Blackpool have nothing to do with Social Services at all, but if you feel that you're struggling, why not say here, in confidence, and maybe we can help.

In which way are you struggling?

Hi Bonny,

Hopefully you will find other people on the Forum in a similar situation to you. It may also be worth getting in touch with the Disabled Parents Network, who are excellent http://www.disabledparentsnetwork.org.uk/

I can understand your worries about social services, but there are disabled parents out there who get help from social services; in my experience, disabled parents and parents of disabled children (understandably) worry too much about the authorities deeming their child to be 'at risk'. Disabled parents are entitled to help from Sheffield social services if they

experience, or will experience, substantial difficulties in carrying out or maintaining essential parent/family responsibilities

Remember, if you did decide at any point to approach social services, it's adult services who should be dealing with you, not children's services, as it's you who is disabled, not your child.

Hi there, firstly, thanks for your replies.

Little one is just over a year old now. I find it very difficult to use my arms and legs - I lifted the pushchair out of the boot of the car in January of this year and hurt my right arm (elbow and wrist) and have struggled with it ever since. In order to help manage I bought a very light pushchair and I use my right arm as little as possible. Using my left arm has now resulted in the same sort of extreme pain in my elbow and made it really difficult to do a lot of basic things. So, lifting little one out of the cot for example means I have to hook my two upper arms under his armpits and lift him towards me so my body can take some of the strain while I put him on the floor. Some days it's taken every single ounce of strength I have to lift him.

How we work it at the moment is OH gets up for work and gets little one up, gives him his breakfast and changes his nappy then puts him on the bed with me - then OH goes off to work. So that's where we stay, he plays on the bed and I fall asleep, he usually falls asleep too after a while. Then around mid-day I mix a bottle for him (OH has puts a bottle of boiled water and a measured amount of milk powder out on the bedside table). On bad days, we don't leave the bedroom. On better days we make it to the living room and on really good days we've been out in the car. When OH gets home from work he takes over looking after little one and making the tea etc. Most days I don't get to eat or drink between OH going out in a morning and coming home in the evening. But I do have good days, and try to make the most of them by at least getting out of the house - that brings it's own problems but they're not relevant to this particular posting.

Little one is at that very clumsy stage as he's just started walking. He's had a few falls and lots of bumps and bruises. I know I should be making him a meal at lunchtime but most of the time I can't. He should be going to toddler groups and places like that but I can't get to them. I can't let him have run of more than one room at a time because I can't chase after him to see what he's doing so we generally are confined to either the bedroom or the living room and I keep a selection of toys in both rooms.

Changing his nappy is very difficult - just bending and leaning forward is painful and difficult. I took him to the baby clinic once - when he was 6 weeks old. Since then it's been the Health Visitor who comes out to me.

Before I had him, it didn't matter that I couldn't get out of bed a lot of the time but obviously now things are different. OH is reaching breaking point as he works quite long hours, because he can't stay away overnight, when he's working in other parts of the country he has to travel home and then leave again very early the next day. He also has to cook a meal when he gets in, takes over looking after little one including bathing him and putting him to bed. He also does all the housework and walks the dog. I worry about OH because I know he's finding it all very difficult and I can just see a major catastrophe on the horizon because I think everything is just going to fall apart. It feels as though we're managing but only by a very fine thread and the slightest thing could just be the last straw.

Hi Bonny,

It does sound like you are struggling. It would be worth pursuing that DLA claim, if you were thinking of using that to pay for childcare. You also have the option of trying to get help from social services, although I understand why parents in your situation are nervous about doing so. Help from social services can come in the form of a "direct payment", which is where they give you cash instead of services, and you can make your own arrangements with it. This can include getting support with parenting, and there is an example of that here http://www.dppi.org.uk/journal/52/viewpoint.html

It might be worth talking to the Disabled Parents Network about your worries in asking for help. They might be able to put you in touch with other people in a similar situation, and give you advice.

Hi there barnsleybroker, i've not heard of that 'direct payments' before so i'll look into it. I'll also contact the network too and let you know how I get on. Thanks again

Hi there barnsleybroker, i've not heard of that 'direct payments' before so i'll look into it. I'll also contact the network too and let you know how I get on. Thanks again

Hi Bonny,

I should clarify that to get a direct payment, you still need to have an assessment from social services, and they need to agree that you qualify for support from them. However, if you do qualify for support, they MUST offer you a direct payment as an option, and will direct you to an organisation that can help you set it up.

Good luck!

Hi I am a disabled mother with chronic M.E and have had many of the problems you have. Firstly I am a big fan of Homestart. It is a purely voluntary organisation and can be very supportive. Secondly have plenty of safety gates and a large playpen. There are various kinds which can keep your child safe but which you will not have to lift your toddler in and out of. Not all nappies are the same. I used old fashioned terry nappies myself but with waterproof pants that fastened at the side so I didn't have to do a lot of lifting. An occupational therapist might be able to suggest somethings to make life easier. Your G.P. could refer you. I must admit car seats were my biggest problem. I've always used an electric scooter to get around. When my children were small I used a babysling. When they got older I used reins harness fastened to my belt when they were sitting on my lap on the scoota. Make meals up on your good days and freeze. Give your child a lot of finger food that he can feed himself. Make sure he has plenty of stimulating toys. Car boot sales and charity shops are great for these. Make sure you have a lot of clothes for changing so if you've been too tired to do the washing you still have clothes available, again car boots are great for extra clothing. My youngest is now 11. They are all healthy bright children and have not suffered from me being disabled if anything they have had the advantage of a mother being at home all the time. They have had closer physical contact as I didn't use pushchair so they weren't a distance away. Homestart could drive you to a suitable mother toddler group or just play with him while you take a break. All new mothers are anxious whether or not they are disabled. It's perfectly normal. Only poor mothers don't worry. I'm afraid parenting is one long worry but it's worth it.

Bonny - we still need to have that chat. Do you fancy popping round one night ? Or even easier I'll come to you or come & get you x

Duckweed thank you so much for posting. It's heartening to know that other people have been through the same thing - and survived! LOL

I have a lady that comes from homestart once a week. I think policy must have changed a bit though because they're not insured to take us anywhere in their car. But, she's watched little one sometimes so that I could have a bath (I never, ever imagined just having a bath would be such a luxury)!

I'm the 'strong' one in the family. So I always have to push myself 100% particularly when OH is around as if i'm down, he tends to get down. So generally I put a 'front' up when he gets home from work - but it's probably taken me all day to work up to it! In that respect I have to be fairly self-sufficient. There's no-one for me to lean on. OH and little one rely on me.

Lindsey - yes please! I'll PM you.

If Homestart won't drive you. How about dial a ride to take you? You would probably find after a couple of times someone would give you a lift. I'm a big fan of soft play areas as you leave the child in a safe enviroment to get tired while you sit and take it easy. She should be able to claim for a childcare component from the tax people if you are on tax credits. Taking a child to a childminder a couple of mornings could help. When he's older you will be able to take him to a playgroup. I think you need a homehelp. I actually employed a Mothers help myself as we were earning sufficient money. She came twice a week to clean the house and take my toddler to the Park. It means interviewing them yourself and checking references but you are in charge. Use internet shopping for your groceries or do one shop to Iceland and get them to deliver. There may be a shopping service in Sheffield. Someone else will probably know. Hire a baby sitter and get out with your husband even if its only to Pizza Hutt. Make sure your husband doesn't feel taken for granted. It's only now my oldest is 16 that we have a lot of possible free time. I used to get out very rarely but I never turned an offer of baby sitting down. I said to my children we were going out when the children were young and my oldest said "But you went out last year."

A while ago I wrote the advantages of being a disabled parent. I can't remember them all but I'll try and remember them.

Because I'm disabled I never had to decide whether to work or stay at home so I had no guilt trips and my children feel secure because they know Mum will always be there when they get home from school.

Because I couldn't pick up my children easily, they learned to come for me for comfort, so they chose not me and they became more confident than other children.

Because I wasn't always busy doing housework or work my children and I got to talk more than in other families.

My children are more understanding and less judgemental of people who are different.

My husband and I have always had to work as a team. Tasks are allocated according to physical abillity not gender. The children see our relationship as a partnership and seem to get on well with both Genders.

Because I couldn't do Time out with the children because I couldn't physically do this I had to develop other strategies which became the Token system (giving points for good behaviour which resulted in prizes)

Because I couldn't use a pushchair my children were always in close physical contact which meant we could talk together and I could point out things to them consequently they learned shapes colours and letters and numbers earlier than many children. We have a very close relationship. Health Visitors and Teachers have commented on this. There are positives to being a disabled parent. I spent my first year as a mother feeling anxious half the time and guilty the rest. Social Workers and other professionals can make you feel inferior by underlining what you can't do but think what you can do. Children don't worry if they don't get bathed every night or their parents can't pick them up. If they want a hug they come to you. You are the most important person to them and love and attention is the most important thing they need.