WHY CANT I DO THAT?

This is a question Tilly asked me the other day, When her 15 year old brother went off to an under 18,s disco at a local nightclub. The age is 13 to 17 Tilly wanted to go but she couldn’t not because she is not old enough but because they dont allow adults and Tilly cant go on her own.

Tilly loves dancing and music  alas she needs adult supervision as she would happily wander off with a complete stranger.

I remember very well the days of weeping I went through when my eldest son left home for uni at just 18, I cried I fretted about  how he was going to cope worried about him getting mixed up with drink and drugs . In fact he has grown up into a very responsible youngman he is in a relationship managing his money and home has exotic holidays and works hard for his living.

How I wish I had the same worries about Tilly, because despite her great knowledge of Cbeebies and peppa pig and the wiggles. Tilly has no concept of time, she cant get herself a drink or make a sandwich, she cant  dress herself or put on her own shoes. She cant wash her own hands or clean her teeth. The only feelings I have are fear what will happen to Tilly.

We have now enter what is called transition stage in Tilly,s life this is where  numerous forms are filled in to hand her over to adult care. This event will take place in 4 years time  when by law Tilly becomes an adult with a right to vote and do what other adults do if only she had the mental capacity to.

Where did it all go wrong think about it the term learning disability what does it really mean to you? Someone who is a little bit thick? someone whom is a bit simple? There is no allowance that a child with a learning disability will become an adult with a learning disability. Downs syndrome wont get better with age, she wont grow out of it . There is a need for change that adult services recognize that Tilly will still have the same learning disability.

Think about it you hear the word disability and immediately people think physical disability. In most case people with a physical disability are just as aware as you and I , but when your dealing with a  mental disability   the issues are much more fraught.

Tilly went to mainstream school until she was 10 those group of children are now  teenagers we see some frequently, with their state of the art blackberries and Iphones, the girls wearing make up and fashionable clothing. No doubt they have a huge list of friends on facebook and myspace. They can catch the bus into town to meet their mates and go shopping or hang out in Costa or go to the cinema . While Tilly still carries around her raggy dolly and wears nappies at night and isnt bothered by the latest trends and cant even type a word into the search bar of google . Yet she will arrive at adult hood at the same time as these other children, The very children that now look at her and ask  why hasn’t she grown up yet?

I feel a sense of isolation, desperation what will happen to Tilly? She  doesn’t have a psychiatric disorder so wont be entitled to be placed in an institution , shelter accommodation isn’t an option here in Essex, We don’t own our own home so cant remortgage to purchase her a share in a property and afford to pay for 24 hr care.

Tilly has  no options.

At the transition meeting  Tilly was asked what dreams do you have for the future, what would you Tilly like to do. This question was put to a child whom talks to a rag doll a child whom thinks the tweenies are real. She was also asked what job she wanted to do, would she like to be a nurse? for God sake get real who writes out these stupid questions?

There is no single assessment for  Tilly,s or our families needs its just bounced from one department to the next with  neither one connecting .

I hear you cry but George Osbourne allocated an extra 2 billion a year for social care this money is supplied by you the tax payer but not ring fenced . Local authority’s are not legal obliged to spend the money on what it was intended for resulting in a postcode lottery for parents of disabled children/adults .

The Government defend this on the grounds of localism, and says its up to local authority to decided whether to use the money for the purpose it was given

All I want for Tilly is for her to be happy  and be kept safe and to be accepted for who she is , for people to recognize she can make a contribution , to be given a fair chance to have her needs met and if she works how ever simple the job to be paid a fair wage and not have to pay for the privilege of doing a simple job.

All my motherly instincts tell me to keep her at home with me forever but what happens to me? what happens when friends ask me out for coffee? I would have to take Tilly i cant leave her home alone. I wouldn’t be able to  have a hobby or join a social club or go for girlie trips away. What would happen to Tilly if I was injured or needed help what would happen to her if i was to die?

Is it right that Tilly should not have the freedom to express her independence? to live safely with her friends? To be able to enjoy  her life and go on trips and holidays with like minded people?  to be able to form relationships and maybe even get married?

Is it right that local authorities and governments can take those rights away from Tilly?

Is it right that on reaching retirement age I would lose all benefits such as carers allowance and day care if Tilly was still at home with me?

I didn’t choose to have a child with Downs syndrome, Tilly didn’t choose to be born with Downs syndrome. Downs syndrome wont go away when she is 18, it wont get better.

How is it for me as a mother? I have daughter whom I love dearly would protect with my life, I have a daughter whom  likes to have fun and laugh and dance, I have a daughter whom needs constant care and support in everything she does. I have a daughter whom will never really achieve much in her life. I have a daughter who doesn’t want much in life. Why cant other people see my daughter is truly amazing and lovely and beautiful in fact I think she is the best daughter the world , why cant you see she is a person whom has feeling, emotions and dreams and it hurts when people call her names why cant you see that and give her and others like her compassion, understanding and a chance?

Now someone please answer my daughters question

WHY CANT I DO THAT?

Dance show

A pretty flower

My beautiful girl

What do you see when your looking at me?

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4 thoughts on “WHY CANT I DO THAT?

  1. Oh Andrea, I can’t type what I feel about this blog post. My heart breaks for Tilly because the world believes she (and others with DS) are not useful society members. I would refute that with everything in me. I know an adult with DS and Katie is absolutely amazing with how she has coped with the adult world around her.

    I believe she received travel training and now manages to board a bus on her own.
    I am exasperated on yours and Tilly’s behalf, that she cannot have an adult with her at the under age discos. That seems a discriminatory issue. I wonder if I could go with her? Granted, I am 28 but I am small and usually get asked for ID in pubs etc so could probably get away with pretending to be younger than my age.

    Who do I see when I look at you, darling Tilly? A beautiful, absolutely gorgeous young lady who clearly loves to have fun, who appreciates the beauty in her surroundings. That is what I see when I look at you.

    Andrea, I wish I could reassure you, but I know that I cannot fully do that. I do know that, having learned fully of your challenges, I will nag my social care colleagues for the info and guidance specifically available for Tilly, and you as her Mother.

    XXX

  2. Hi Tilly, I see a lovely young girl with a curiosity about her. Big eyes watching, not quite understanding. I see someone who I bet smiles a lot, and loves dancing, & who sees the beauty in everything around her 🙂 I see someone who is loved, as she deserves to be. xx

  3. Once started I had to read all you’ve written about Tilly, it’s straight from your heart and I so admire your honesty and determination and unswerving love. Tilly is lucky to have you as her Mum x

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