I have chosen the above title as that was the theme for this years’s Down Syndrome Awareness Week (16th March to 22nd March).

‘All people with Down’s syndrome should have full participation in decision making about matters relating to or affecting their lives.’-DSA UK

This theme is particulalry relevant to our daughter K this year as she finishes school in June and has chosen the college she would like to attend. College would be 3 days. I was in the midst of looking around various clubs that she could access over the summer and the days she isn’t at college.

She is also keen to get various work experience and hopefully get into employment.

Families of people with disabilities have been campaigning for the voices of their children to be heard. As like every other young person, people with a learning disability are capable of making choices , whether it be what they would like to eat, what they would like to wear, what they choose as a hobby , to making big lifestyle decisions in relationships, independent living and employment.

December 2019, was also an opportunity for K and her friends to vote in the general election. Families exchanged photos of their kids going to vote. A moment of pride for these young people and their families.

The ‘We Decide’ theme is also featured in a video produced by the National Down Syndrome Association on Facebook . This was released on March 20th. It shows various young people making choices in their daily lives. A reminder that we live in a democratic society and we all have the ability to make the correct decisions for us and our families.

It’s ironic that the Awareness week ,with a theme of ‘We Decide’, was followed by a week of lockdown due to coronavirus. Although we were expecting it, it would have scared us thinking we will be loosing our freedom to perform our daily routine ; going to work, going to school, going out to the cinemas, eating at our favourite restaurants, popping into the shops for milk or meeting up with friends. We have all lost our freedom to make the same day-to-day decisions that we made a week ago.

I think we would all agree that the groups of people mostly affected by this will be the elderly, the vulnerablen ( Adults and Children), those with mental health problems, those who live on their own , those who have lost their jobs ,the homeless, families caring for children with high needs and many more. These are the groups of people who probably didn’t have the privilige to feel free to do what they wanted day-by-day even before lockdown. A group that probably wished their lives were different. And now they are loosing any stability or freedom they had in their lives. Like the visits to day care centres, weekly lunchtime clubs, walking to the local shop to get a paper or visiting their usual place of worship.

Some people who need carers may not even have the choice of who comes into their home to help them, as several carers are also self-isolating due to illnesses themselves. As we get older we like to hold onto routine more, it gives us a sense of being secure and preserves dignity.

We also have the A- level and O- level Students, who have been working hard towards exams that would determine their future. They have encountered one of the saddest times in their lives as they hear they have no other opportunity to get the best results they can in their exams.They are now worrying if this would make it even more difficult for them to get into their University of choice and do the course of their choice.

Families who made summer holiday plans are not able to go ahead with them. They have no choice but to spend their holidys indoors

Workers are encouraged to work from home. A new system for many as they try and work out new IT systems and change the way they work or trying to work while looking after their kids and then there is home-schooling to fit in.

Key workers going to work are finding themselves working in different areas and having different responsibilites.

Teachers are taking turns to go into school during the Easter Break to look after the children of key workers or the vulnetrable children . A way of working they never thought will happen.

We are all making adjustments and making decisions we wouldn’t normally make. But we have no choice. However in our heads we know this is a temporary plan and we will get our lives back when it is over. We can be autonomous again.

When this happens, we must remember the people who wouldn’t have friends or family visiting them as they never did anyway, vulnerable kids who will start worrying about the long summer holidays, the homeless being out on the streets again and the many families who would have lost loved ones.

Let’s appreciate the lives we lead now and make the most of it. We can Decide how we spend our days now. Let’s try and have fun but yet reach out to the people who might be finding this lockdown harder than us.


Published by JH_blogger

British doctor, wife and Mum to 2 daughters, Kirsty and Melissa. I published my first book in 2020 'Our Family's Journey Through Disability and Cancer . Buy now https://www.amazon.co.uk/Familys-Journey-Through-Disability-Cancer

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