Its Not all Doom and Gloom. — Scope | Disability forum
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Its Not all Doom and Gloom.

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JDWilson
JDWilson Community member Posts: 90 Listener
edited May 2014 in Children, parents, and families
Many of you will be new parents of Cerebral palsy children and thinking OMG what now? how will we cope? how do you do this every day? EVERY CHILD is different and every child with CP is different. Experts can say oh they Won't do this they'l never do that but OUR children have habits of making them into liars. I'm NOT here to give false hope as I don't know you and I don't know Your child but listen to the experts and store it away Don't let it stop you encouraging your children and having a bit of Hope. My child was born at full term There wasn't anything that really stood out and Screamed there is something wrong So we had 12 months of "normallity" with niggles of oooh mmmmm not sure about this. My daughter is now 13 and had moderate Spastic diaplegia cerebral palsy she had the usual treatments of CP the pedro boots, splints(afo's) Botox, Baclofen,physio etc then she had multi-level surgury last year. I'm not saying its been easy because it hasnt there has been times of frustration, anger, resentment (not of her just at the situation), inability to cope and that was just me. She now walks with crutches and uses a wheelchair but she has just got into Disability swimming which has been really good for her its something she CAN do. She has been in 2 reginal competitions and got top girl at one and she went to the Nationals and got a silver medal. No-one could predict this poor little thing with CP would do so well. She is lucky and doesnt have a lot of other problems going on too. We have had to fight for everything for her from being allowed to do her bikeability training on a trike to physio and aftercare. It is so easy to get wrapped up in all the care needed that we can forget what wonderful children we have. Always try to encourage them to reach for the stars however far away they are. It could be a smile, or a look at you or something so much bigger. Take each day as it comes and try to find one thing to smile about each day. (usually its the kids themselves) I HOPE this has made someone smile LIFE is a worry (even when child doesnt have problems) and can get pretty hectic with hospital appointments But Our children will Shine through and show them all.
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  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
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    Well said! We had a year of not knowing too - knowing something was really badly 'not right' but not knowing what it was. That initial diagnosis (catastrophic' damage, quad CP, bilateral damage to lateral ventricles, PVL), and the months that followed, were so awful and I felt so bleak about Tom's future but we kept saying ' well, lets let Tom show us'... and he did! Here I am, one year on, and my little 23 month old boy is walking (with a bit of help) with a ladderback chair, commando crawling, developing the ability to sit unaided for longer periods without falling (30 mins the other day), talking MORE than his able-bodied twin sister, singing 'Twinkle Twinkle'and 'Baa baa Black Sheep', shouting 'Sit Down Molly' at his 4 year old big sister and generally being just fabulous. He is very physically affected by his CP, but he's working so HARD, rising above the difficulties and just having a good giggle. I know that there will be lots of hardships ahead - he's already had a botox op on his eyes to try to correct his squint and there will be surgeries and drug treatments to come but we will help support him and try to get him through it with love and cuddles and kisses. The joy we get from having our son and being part of his life far outweighs the difficulties I face being a twin mum and having a child with cp. I may be working hard for him - but no-one is working as hard as Tom is, and for a 23 month old, that's quite something. I'm sure when he is older he will find something that he loves like acrossfromthe park's daughter and he'll excel and get great pleasure from it.

    Maria x
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  • JDWilson
    JDWilson Community member Posts: 90 Listener
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    I'm sure he will Maria the biggest obsticles is knowing where to look for things they can access. Do you know there are lots of sports our children can take part in with other children just like them? This has been a great starting point for Samantha and she is now REALLY enjoying her swimming much more than before and she did enjoy it before. At the weekend she went to Nottingham for CP National swimming competition this was brilliant she did so well too. She got 3 bronze medals and 1 silver medal. Our children work so hard every day just to get out of bed and get going and still they do it most of the time without complaining but WE would prob complain a lot more if it were us struggling like they do at times and still they carry on and move forwards. Some days it can be so hard as a parent with stress and hospital appointments and sometimes wishing things could be different but we are not waiting of miracles we are living each day as it comes and hoping we get through the day at times and still our children just carry on. Some days they may let the veil slip and have MAJOR melt downs (temper tantrums and sheer frustration) but don't we too? I think the best advice I could pass onto new parents facing diagnosis is Remember the CHILD NOT the DISABILITY. At first I saw my child disappear and the diagnosis just be there It took over everything and I had to find out everything about it and what did it change? NOTHING she still has CP and she is still MY DAUGHTER who is showing everyone I'l do things MY WAY. :-)
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  • redchicken43
    redchicken43 Community member Posts: 48 Pioneering
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    The are some brilliant comments here and I guess the most important thing is to not let any kind of disability define who we really are. Personally I found swimming tremendously beneficial to me together with cycling that I did from a very young age.

    Its hard and difficult at times and nobody knows what the future holds for any of us certainly when its comes to the longer term effects of CP, but everybody wants to be an individual and this should never be forgotten.

    All we need are good role models that children can look up to when they are young who can encourage them to take the next steps in life.
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