I have this little boy called Adam.
He is very sweet and very kind.
He is loving and giving,
And scared of many things.
Because life has shown him a harsher side than it shows to most 10 year old children.
He has had many surgeries.
He has known much pain.
He has cried with terror upon waking to find most of his body in plaster.
He has broken bones doing everyday things.
He has had terrifying episodes of sudden illness.
He has struggled to breathe.
He has been stared at and pointed at.
At a theme park, a group of children even snaked their way BACK through the queue to stare some more.
It took him many years to learn to speak.
It took almost 10 years to master sitting.
It took over 10 years to be able to move his legs.
He still can’t stand.
He may not ever.
He cannot walk.
He may not ever.
But I know that he will not give up.
I know that he wants to live the fullest life possible.
I know he wants more.
And it is my job to help him.
I will hold him through illness,
I will care for him during recovery from surgery,
I will be strong when therapies are hard to do.
And I will do all I can to help him through.
He has seen his wheelchair destroyed by an airline.
He has been left out of fun activities.
He has been unable to get upstairs in new buildings.
He has been unable to play in playgrounds.
He has been unable to use the toilet when out on far too many occasions.
He has been too scared to go to the cinema.
He has felt unwanted and unwelcome at so many places.
All because he cannot stand or walk.
I know that he can have a good life without walking.
But I want him to have the life he wants to have.
So I will do all I can to help him.
If there is any way in this world that he can stand, I will help get him strong.
If there is any way in this world that he might be able to walk, I will be with him every step along the way.
But it may never happen, no matter how much we wish for it.
I need another plan.
And that plan is to make the world better for him, and for all who need it to change.
All children need to play.
All children need to go out.
All children need rich experiences.
All children need to feel like they matter in a wider world.
Including disabled children.
All people need to be able to manage their toilet needs with dignity and safety.
But I cannot make that part happen by myself.
Making the world more accessible is going to be a big job but it can be tackled one stage at a time.
Step one, is making sure that Adam (and hundreds of thousands of others) can access days out, shopping trips, travel and entertainment just like everybody else.
And that means making sure that access to Changing Places toilet facilities, for those who cannot self transfer to the toilet, becomes protected in law. I am guessing that you are reading this and thinking, “surely disabled people are already protected by law in all areas of life?” but they are not.
That is simply wrong and needs to change, so please, sign THIS PETITION and help bring change.
Then share this so that more people might understand and care.
Who knows, maybe it will even reach our Members of Parliament or the Prime Minister?
And maybe they will care?
I hope so, because I love my little boy so much and he truly deserves a better life.
Ordinary Hopes 
Such a heartfelt post. I hope all members of Parliament reads it.
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If they spent a day with us, they would understand.
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It is the least that can be done for anyone disabled enough to need it, not just children. Think: what if you as a non-disabled person joins the ranks of the disabled – you would want it.
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When people in the UK are pleading for access to toilets, it is clear that the UK is nowhere near as accessible as people think it is.
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Reblogged this on The Purple Sheep and commented:
It isn’t right, it isn’t fair, it isn’t necessary. Life should and could be made much easier, and better, and inclusive for many people, adults and children. Greater awareness of the realities is what is key. No, disabled people are not already protected in law, there is still an awfully long way to go before they are.
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Thank you.xxx
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Such a beautiful and sad post all at the same time. I so agree that all children of all abilities need to play and have a fun filled life. Sounds like you have a lovely little boy and are an amazing mom x
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Thank you.x
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Wow, what an inspiration you both are. I know a little about caring for disabled children but this is a real insight.
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Thank you. My bigger worry as my son grows is what it is all doing to his emotional wellbeing.
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An exceptional post. I struggle to comprehend why people in this day and age still fail to make provision for disabilities. I hope that you manage to instigate change.
(hubby helping out)
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That has been written so beautifully! I’m myself a mother and I care about my child a lot. Sometimes I think I shouldn’t care so much, just to make him more confident.
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You have written this so beautifully and emotionally. I will sign the petition x
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Thank you. It means a lot to me.x
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It really saddens me how people in wheelchairs or with disabilities are treated by others. It seems so unfair but what really touches me is how determined you both are to never give up. That is a beautiful attitude to have x
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You do a brilliant job raising awareness and making the best life you can for your son and others.
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This is a beautiful, yet upsetting post. I’m sorry for everything you have both been through, but you are both amazing, strong human beings xx
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I don’t people realise how difficult it can be for disabled people to get around. I have signed the petition
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He sounds like an amazing young man and as long as he has you fighting his corner, he will be just fine. You raise so many good points with getting access to places x
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So lovely, what an angel! Wishing you and him all the best!
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Such a beautiful post. He s truly a remarkable young man and I love how much love and support you both have. We really do need to make place more accessible x
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What a deep post. All children should be able to feel safer and feel wanted anywhere they are.
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Everyone should feel included and be allowed dignity to get through the every day essentials. I have signed the petition already and will share this post. Lx
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it’s sad and I understand the not being able to go in certain places. It is not an equal world yet and much needs to be done.
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This was so beautiful to read. Very touching poem.
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Bless him. All children should be able to enjoy their childhood to its fullest potential. What a brave boy x
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No child should be scared to go out. I really hope you manage to get the changes needed for your son and many others xx
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What a beautifully written piece. These facilities should be protected in law. I’ve signed and shared the petition.
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Thank you. I truly appreciate that.x
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Just love this post. Love all of them actually #accesslinky
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Thank you.x
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Why is this so hard for them to comprehend? These children need the same as all other child, plus much more. They should see this, it is obvious ❤️ #kcacols
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I follow your journey with such heartache. Any of us could one day find ourselves needing the things Adam needs and I so wish for this country to be more supportive of people. Supporting what are actually just basic needs.
Signed and shared always.
#KCACOLS
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Thank you. It means a lot to have your support.x
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They just need to spend a day in your shoes and they’d get it. Signed and such a lovely read, heartfelt and emotive. Thanks for linking up and hope to see you next time too! #KCACOLS
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I am sure that if councillors and MPs came out with us for a day they would soon prioritise this! I would pour them a large drink before heading out for the day!
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Such a sweet and sad post. Very well written and the love you have for your boy shines right through. Thanks so much for linking up at #KCACOLS. Hope you come back again next time
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Such a heartfelt, wonderful read XX . #KCACOLS
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What a fabulous young man,and a fab parent.Power to both of you xx
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We try to do our best. I want him to know that he can improve the world for himself and for others.
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