Dear Katie Price

Dear Katie

I think you have been misinformed, and I would like to show you what really happens to parents of disabled children, and not what you have seen should happen.

As you will know getting a diagnosis for your child is like being hit by a train, you will have already had appointments on top of appointments, and then wham you get the, I/ we believe you child has……….., most of the rest is normally a blur and for the next few days you often don’t know what to do or who to turn to, some parents are lucky and will get a social worker from the child disabilities team, who will either guide them or will be as much use as a chocolate teapot, others will be left for weeks on end searching for their own answers, often not knowing where to search or who to ask.

Then there are the parents who will be hit by every brick wall they can find and are passed from pillar to post at all times, they are crying out for help that never comes, so they just muddle through as best they can. I can tell you I have never found a disabled parent who is lazy, and yes there are probably some out there that are, I am not naive I know they exist too.

Please Katie do not judge us all like that help us get the changes that need to be in place, here is what I think should happen.

A named social worker who will help us get everything our children need,

Support from day one, for the whole family,

Someone who will listen to our concerns and help when we need it,

Information networks for parents regardless of the child’s disability

Lets work together Katie we could all make change happen here and maybe you would be heard better than some of us

Yours

Terrijayne

 

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Father’s Day

Father’s day is a bit bitter-sweet for me, having an amazing dad who has always been there has been hard for me that my own children don’t have that. So I am taking the time to think of all the other mums out there doing an amazing job at being mum and dad everyday and all the dads that no longer have their children for one reason or another you are all amazing.

Us mums that are being mum and dad do not get the thanks we deserve, we are there for our kids no matter what day it is, don’t get me wrong there are some amazing dads out there who will always put their kids 1st and I will praise them all the time, it’s the bad ones that give these amazing men a bad name.

Then there are the dads who want to give their children the world but can’t because their child was taken to soon or are not given the chance to be the fab dads they want to be I also salute these men, your time to show your child will come.

So today take a bit of time to think of all parents out there.

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My Nan My Inspiration

I hope I am like my nan she brought her kids up to be great people and I hope some of that rubbed off on me. When Reece was first diagnosed it was her that got through to me and made me see if I need help to ask for it and get every bit of help I can for him, she wrote me a lovely letter, it’s what nans do, no emails or text messages, and I still have it tucked away in a safe place.

I have been told she walked a mile with a broken leg while pregnant with my uncle George, that says it all she needed to do it so she did even in pain, nothing was going to stop her. I am sure I have the same spirit I never give up if I can be half the person she was I will be happy, she would help others where ever she could, she has always made sure all her kids and grandkids are ok and been there for them if they needed her.

I couldn’t go see her the past few years that wasnt my nan, she wasnt the same person I think for a while she had known she didn’t have long and maybe kind of not wanted to be here, but who can blame her this was the lady who never stopped unless it was for a quick sneaky nap in the chair when she thought no one was looking.

I do hope I have made her proud and will continue to do so, I am going to name a star for her rather than buy flowers so she can watch us all from there.

Love you Nan will miss you always now fly high and free xx

Edit as I got it a little wrong this is from My auntie Carol That’s beautiful Hun but it was auntie dee she was pregnant with and further than a mile,I no she made me walk with her. She’d fallen down some stairs where she worked and just got up and carried on. I miss her so much xx

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The day my world changed again

me
2nd Dec 2012 I remember it like it were yesterday, it dont hurt as much as it used to, to be honest I am really ok with it and this other woman who I wont name as I am way past that stage now, did me a huge favour. As you may have guessed my partner walked out on us on that date, leaving me to bring up four children including my son who has cerebral palsy, its been tough there have been tears, tantrums and total meltdowns and that was just from me.
Its surprising how quick children bounce back and just see things for what they are, see things I always knew but didnt want to admit to them, they see its always me there for them no matter what, its why at this moment in time even after 4 months they still wont see their dad, he still thinks its me not letting them, but I wont force them into anything, so if that is me stopping them see him then so be it.
We are slowly getting on our feet, finding new ways to do everything, helping each other where we can, and it feels good, we have spent this easter weekend decorating the hallway, my eldest even doing a bit of glossing. We are finally the family I always wanted us to be, doing things together, playing the WII having fun, enjoying each others company.
I am not saying we were never happy before, but it wasnt the great thing I longed for, but for so long i had tried to keep it altogether so my kids had a dad, to me that was the main thing, I didnt want to be a single mum, I felt that I couldnt do it alone, I didnt want to do it alone, yet i had been for many years, maybe I needed that push to show me we can do this, we can be that happy loving family I have always wanted us to be.
I have decided to tell everyone this now, as i finally feel strong enough to say it out loud, that no matter what is said to you, you can make things good from what ever life is thrown at you, its why when I decided to get the tattoo with his name on covered, i chose a phoenix, to show the start of our new life, stronger and better than ever before.

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Why is everything so much more expensive for a disabled child ?

I have just seen an amazing sledge for children with disabilities, while its lovely well made and just right, why should I have to pay £250 for it when I can buy one for my other children for £10 ?

It’s not fair Reece rarely gets to go out in the snow because he can’t in his wheelchair, even if we want to go places that public transport can’t take us we have to get a special cab which costs extra or if Reece wants to play a sport the equipment is more expensive, even booking tickets for events cost more because we have to phone for them.

Why because I have a disabled child does everything cost more ? ok I understand they cost more to make and we get DLA to help with these extra costs, but how far do you think that money goes ? and why are these things so much more expensive? why couldn’t companies make things cheaper so our children can be included in what ever it is they want to do?

All parents of disabled children want is for them to be included yet they are excluded because of costs.

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World Prematurity Day

With world prematurity day fast approaching, I thought it was time I shared my story.

I was having my first child everything seemed to be going ok, yes I was a bit smaller than expected but other than that nothing to worry about, or so I thought when I was feeling unwell, sick flu-like symtoms then I started getting stomach cramps so my partner phoned the docs who told us to get to hospital asap.

I was going into early labour, 19 scared half to death not a thing brought for our little man who had decided now was his time, it was 2 days after christmas 1999 and we were on our way to hospital, the staff were really good and started me on a drip to stop the labour which worked well until new years eve when they took me off the drip Zac decided he didn’t want to wait for the new year or his due date 9 weeks from now and arrived tiny at 2lb 12 oz but ok. Taking that 1st trip to see him was very scary I really didn’t want to  put my hand in the incubator a touch this tiny tiny baby, i am so glad my partner was there an helped me do it, it was the most amazing thing to do, over time I got to hold him and help care for him like a proper mum,

the hardest bit for me was to leave hospital without him I had just had a baby I was ment to bring him home, instead I had to leave him tiny with the nurse’s looking after him.

We were very lucky and all he needed was a bit of cpap (air flow just to keep his airways open) every now and then, he did gives us a bit of a scare 3 weeks later when he picked up a cold, which a lot of prem babies born in the winter get when the go home, lucky for us he got it while still in nicu, but he made an amazing recovery and was home 10 days after that.

I was to do it all over again 9 months later with my second child who was conceived shortly after Zac came home, this time i had got a week further, lucky for me I knew the signs this time round and we went straight to the hospital.

Reece was waiting though by the time I was checked over and the nurses were trying to get the line in for the drip I could feel Reece’s head and within 15 mins there he was weighing in at 3lb 10oz , again we were very lucky and Reece just needed a bit of cpap and was home within 4 weeks.

Being born early brings its own problems and although Zac is totally fine Reece has cerebral palsy caused by being born early and having a bleed in the brain, it doesnt stop him though, yes he uses a wheelchair, but attends mainstream school and at 12 is doing really well.

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What my dad keeps asking me

When are you going to run for MP ?

Dad I really don’t want to, purely because I don’t actually believe a word most of them say, they are always saying one thing and doing another, and if I cant believe what they are saying how could I expect someone to believe me when I say it?

But you would be so good you stand up for what you believe in and are not afraid to speak out.

Yes I do, and I can still do that from other here I am being heard, I can see that from people coming here, and now disability groups are following me on twitter, so for me right now that is enough. I enjoy standing up for those that don’t have a voice and won’t stop until they are heard.

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