#1
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This months winner for the spotlight member is Mummy_of_Matty
A truly fantastic spotlight Smile
Look forward to the discussion afterwards

Here is this months spotlight:


1) Tell us about your childs disability and age?

Matthew is 5, 6 on the 12 of August! He was born perfectly healthy but contracted encephalitis at the age of 6 months old. He was left severely brain damaged. He is a full time wheelchair user and can't sit unaided or talk. He also suffers from epilepsy and reflux.

2) Tell us about the day you got the diagnosis?

Matthew was in hospital for about 3 months, so I can't remember exactly when doctors said 'encephalitis'. I do remember not having a clue what it meant and just assuming a fancy name for a virus, and it being about a week before I went home for a little while, and googled it on the computer! One of the first sentances I read was the number of fatalities from the illness which was absolutely terrifying.
I also remember the consultant showing me Mattys MRI scan of his brain, and just breaking down, as all I could see was the huge areas that were 'damaged'.


3) Who was the first person you told about your childs diagnosis and how did they react?

I can't remember the first. I remember calling a friend, who was actually in the airport ready to go on holiday to Thailand and telling her (never even thought about the timing!) I also remember calling another friend, who, despite having only having met us once before (we spoke online a lot), and living over a 2 hour drive away, immedietely made arrangements to come and see us in the next couple of days, a gesture I'll always remember and love her for. Telling my husband was extremely difficult - I was at the hospital on my own a lot of the time as he was looking after our daughter. I remember him coming to see the consultant with me, and him asking her if it was permanent. When she said yes, he got up and walked out in tears.
Up until then I was relying on his positivity to get me through it, as he firmly believed no harm could come to his son, and seeing him come to terms with it was incredibly difficult.

4) What is your child biggest achievement to date?

I think every achievement is relevant to that point in time, and picking the 'biggest' is too hard! Survival of the illness is the first achivement, then having him start to respond to us, as he spent a lot of time comatose, not responding to anything or anyone. Then my husband teaching him to eat and drink again, meaning we could get rid of his feeding tube when he was about a year old. Then him gaining head control at about 2 1/2. He's now gained very good trunk control, and his physio's believe him to be close to sitting unaided. I think the biggest thing for me is him going to school, a special school, but nethertheless, he has friends there, charms all the teachers (who many have admitted he's a secret favourite! ) goes on the school bus all by himself - he has a life independant from me in a way which is not something I would have thought of, seeing him in a cot in intensive care, all hooked up to machines.


5) What 3 tips would you give to parents of disabled children?

Learn to enjoy and appreciate the little things - being told that your child may walk eventually is a great goal, but it does make you miss the little goals that help them on their way. Focus instead on them responding to you, maybe eyes looking or lighting up when you walk into a room, or call their name, or a smile. Move the goalposts a tiny bit at a time.
Don't be ashamed or embarrassed to claim benefits that your child is entitled to, and don't be ashamed to use DLA for purposes that benefit everyone, not just the disabled child. Quality of life as a family is very important, and if a family trip out, paid for by DLA brings the whole family together, then it DOES benefit the disabled child.

Look for the positive side of having a child with disabilities, and not just the obvious ones that people point out! I had great fun coming up with ideas for, and designing a sensory area in the home for Matthew. It was a scary time, he'd just come out of hospital, but by giving myself that project it gave me something else to focus on, and it meant I could indulge my passion for lights and mirrors! It seems a bit flippant, but I firmly believe it played a huge part in getting him to respond to us again.

6) What has your childs disability taught you and how has it changed you?

Patience and the importance of family I think. With my eldest daughter I used to get frustrated when she couldn't explain what she wanted. I've had 5 years of it with Matthew, and I've learned to understand facial expressions and eye pointing amongst other things. I was also desperate to get back on track for having a career ( I was at college when she was a baby). Now when Matthew is at school I do voluntary work, I'd still love a career but I know it can't happen for a long time, so I get fufillment outside the home that way, its totally different to where I planned to work but I love it!
I'm also far more aware of the whole medical and benefits side of disabilities obviously, I wouldn't have dreamed how difficult things can be and when I hear people moaning about those scroungers on DLA and their 'free' cars and free tax.....I want to scream! However I do my best to educate them 'nicely' towards the truer picture!

7) What did your childs diagnosis change in terms of your dreams for the future?

When Matthew was taken ill I was at college in my third year of a tourism management course. Thanks to the tutors help I still completed a total of five years and gained my HND but I knew a career in that subject would be difficult with a severely disabled child. Along the way I've met many people, who have suggested fields of work they think I would be great at - play therapist, physio and OT have all been mentioned! I don't think I'd do any of them, but I do like the fact that I have developed skills I'd have never even thought of otherwise.
My dreams for the Children have also changed, like most parents I envisioned them getting married, buying houses, going to university etc. I realise Matthew is unlikely to do that, and realised that actually I just want them to be happy, and as independant as possible. I'd LOVE to think Matthew could one day have his own place, even if its some kind of sheltered accommodation, but even if not, if he lives with us all our lives, then so be it, as long as he reaches his own potential in his own time.

8) You run the country and you have the power to change ONE thing what would it be?

One thing? Does that mean anything? If so, the attitudes of people towards disabilities would be great! Not having my son stared at in his wheelchair everywhere we go! Not having friends with autistic children feeling they have to fight for or explain everything because people don't understand hidden disabilities.
If I can't change peoples attitudes, then a consistancy of care would be good. I'm terrified of Matthew reaching certain goals, as everything changes. When he started school we lost services and had to fight for others once he left the under 5's team. I'm dreading him going to secondary school and it all happening again, and I hear the time between 16-18 is even worse - not a child yet not yet an adult.


9) What organisation has delivered excellent service when dealing with any aspect of your childs disability?


Physiotherapy has been great. We've been lucky and always had really helpful people, who will help where they can, and write letters etc, even if not specific to physio. They have all taken the time to get to know Matthew, and me, and provided excellent support and a sympathetic ear when needed. We've also never had to argue about the need for therapy, we've pretty much had one appointment every week, or couple of weeks, since he left hospital.

10) Have you ever had to fight for something to help your childs disability?

Loads of times! I've never really had anyone to fight my corner for me so I've tended to do it all myself. We've been refused direct payments several times for starters, and I've been embroiled in arguing for housing adaptations for nearly 3 years. I understand limited funds, so many people etc, but you do have to say enough, my child deserves this help, we can't manage without it!
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#2
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Heart Yeh! Congratulations! Go Team Matty! Heart
#3
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Thanks for sharing your story, I enjoyed reading that and getting to know you/Matty a bit better. Smile
Julie xx
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Brilliant Matty's mum lovely to hear all about you and Matty

Bernie
Don't look down on anyone unless your helping them up
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Great thanks for sharing your story x


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