Respite My Family’s Story

In the news recently we all heard the story of the mother who wanted to put her daughter into care because she didn’t get enough respite care, whilst empathizing with the mother and the little girl’s severe disabilities there are thousand of families out there that don’t even get any respite let alone every week.

Let me tell you my story about respite care. As you know I am a mum to 4 children, 3 of whom are classed as disabled with special needs. For years we have asked, been promised respite. Even the pediatrician on one of our many visits said we needed some respite care. This was due to Pinkie and Perkie not sleeping, they wouldn’t go to bed till 2am ish and then be wide awake again by 6am, both Mr Savvy and me were physically and mentally exhausted. Which in turn, I ended up with severe depression, so much so that I could have walked out of the house and jumped off Beachy Head. I used to think of ways of ending my life. Consequently I was put on to a high dosage of prozac, which all the professionals that we worked with knew but still we didn’t get any help.

Do you know Mr Savvy and I , since being together 10 years we have been out ONCE on our own and that was to see Pirates Of The Caribbean At World’s End as a birthday treat for me to try to cheer me up.

Fast forward a few years and we were really lucky to be given by the housing association a brand new 3 bed town house, the answer to all our prayers it had a garden for the kids. So I started getting better very quickly and just after we moved house I was taken off prozac. As life was getting a lot better there was light at the end of the tunnel.
We moved in to the house in February and then in the July I found out I was pregnant, we were over the moon but didn’t want to tell anyone until I had the scan as I had suffered 2 miscarriages and didn’t want to build my hopes up. It was confirmed at 16 weeks that I was in fact well and truly pregnant and had a nice bump to show off as well. When I went for my scan at 22 weeks there were concerns about my high blood pressure and protein in my urine – oh no it was start of pre-eclampsia ( I had suffered this previously with my oldest) .

At that time I was lucky to be working with the disability team and they were so good I rang them to tell them that I was just to rest for the duration of the pregnancy. They sorted that Pinkie went to nursery full-time from 9am -6am 5 days a week and perkie would attend the after school club till 6pm. Fantastic, I had all the pressure taking off me. The pregnancy was an awful time , my blood pressure out of control. We were in and out of hospital, we were there everyday so I could be monitored we tried to keep it all as normal as possible for the kids. It was too much strain on Mr Savvy, he reduced his hours at work so he could look after us all, he cooked, cleaned he was
taking all the stress of everyday life that we normally would have shared. This caused him to be close to having a nervous breakdown.

A few months ago at a recent meeting with the professionals that work with my family , I was told we could have respite care, all I wanted was a couple of hours just to give Mr Savvy and myself, some time together to go shopping etc without the kids. Do you know what we were told, the next day. You don’t fit the criteria.

I think there needs to be a big shake up with regards to respite care because they are a lot of families that really need the help that don’t get it, we were lucky that the disability team stepped in to help us. However, no matter how tough life gets or what challenges we have to face with the kids especially with Little Gnome we would NEVER contemplate putting them in to care

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8 responses to “Respite My Family’s Story

  1. That’s crazy that they can change their minds like that. I hope you can appeal their decision (I don’t know if that’s how these things work) as it’s clearly ridiculous that they wont help you out. It’s not like you are asking for much. xx

  2. The system definitely needs a shake up! But then I’m not saying anything you don’t know am I? 😦

  3. Crazy isn’t it? What I don’t understand is how the government are more than willing to put kids into care for astronomical cost but not prepared to fork out £30.00 a week for a couple of hours respite! How does that make economical sense? Do they have anyone in government that actually has a clue about the reality of these issues? We definitely need to shake them up a bit. I never had any respite with Dan either but that was in Canada so I never knew that it was possible anywhere. Honestly didn’t really think about it anyway as you deal with the hand you are dealt most of the time but it seems that our system is definitely unbalanced with some getting more and others getting less. Grrrr, thats my vent for the day! Take care and keep writing! xx

  4. It’s a total lottery as to who gets respite and who doesn’t. It shouldn’t be though. We’ve never asked for help and despite it being pushed at us by J’s headteacher, (most of the kids at the school get limited respite) we’ve always refused. We’re lucky, my OH has skills he can sell and is self employed so we fit work in around kids. I just don’t know how parents manage who have to work for an employer. The whole system needs a shake up. It’s unfair on the kids too. They don’t need parents who are too physically and emotionally tired to cope. Good post. xx

    • Thank you , yes it definitely a postcode lottery. I think all parents of special angels should be offered respite so they can go out now and again, it would be a big help at times wouldn’t it x

  5. My SIL works in respite care and it does seem to favour the poorer areas. When will the government realise that every disabled child needs support regardless of where they live?

    • Thank you for your comment, yes I do think it is a postcode lottery which is all wrong. I agree that every disabled child does need support if it be for a few hours a week to what ever they do need help. A very valid commnet

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