WE DECIDE

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.

ISOLATION

Since my last blog the country is now in Lockdown! My husband and I being health professionals were still at work. Unfortunately, we are now housebound for 14 days. M started with a dry cough and runny nose 4 days ago, the day after lockdown . It was not easy trying to decide if she fitted the criteria for self isolation. Under normal circumstances I would have said ‘It’s just a cold…’. However this ‘cold’ now could potentially be a ‘deadly virus’. Work is now on hold for 14 days. We felt a sense of guilt but had to remind ourselves that we were being responsible, following guidelines and helping the NHS.

Poor M is now in lockdown in her own room. The only way we can distance and stop spread within the household. Guilt sets in again wondering if we are doing the right thing. M is a sensible 12 year old who understands her sister is at high risk and her parents need to be well to look after the family.

Thankfully M is having lessons online from school daily from 9 am to 3 30pm . This seems to take up most of the day. She is also using this time to do work-out sessions in her room, practising her drama and singing , watching Netflix/Disney Plus on her computer, reading, using social media and Facetiming her friends. I never knew Instagram had work out sessions! Gone are the days of work out DVDs ! (or Videos!)

I am the only family member taking food up to her room and spending time chatting to her about her day , checking she isn’t emtionally compromised and her symptoms have not worsened (Cough not worse, no Fever, no Anosmia, not Breathless). She is probably reciting this in her sleep.

Sadly I have a mask and gloves on while we do this. We have also been texting and facetiming each other. K gets really excited when she Facetimes M, as she can watch herself being cheeky with M. M sometimes stands at the top of the stairs so that Dad and K can say hi. It’s also the time when a quick amazon purchase request is made…it’s normally a yes from us.

Day 3 of isolation was also my Birthday. N and K did their best to make it a special day, I felt spoilt but missed M. I missed her. I longed for a hug and a birthday kiss from my family but we have to be socially distancing and at least we are all in the house together.

M also looked upset that she wasn’t able to celebrate my birthday as how we normally do. I felt empty but no words can describe how proud I am of M. She is the most sensible, resilient, caring, hard working, considerate 12 year old that I know. But I am biased! She is determined to ‘contain’ herself in her room and not put her family at risk.

M was the last person I expected to be in isolation. I was preparing M to look after K and herself if Mum and Dad got unwell. M has a book of recipes and lists of things she could do if Mum and Dad got ill. We have a box with sweets, easter eggs for Easter Egg hunts, biscuits and easy to open cans if Mum or Dad were unwell and we had no fresh food to cook. M also has also been cooking for us on the weekends practising her cooking skills if Mum or Dad are unwell.

I am sure like you all, our isolation days have been busy! Cleaning surfaces, taps, light switches, running the washing machine and dishwasher everyday, as well as washing our hands several times till our skin is drying out! (Reminds me we may be running out of hand cream!)

We are also obsessively cleaning every package that comes into the house from outside. Wearing gloves as we do this and discarding packaging immediately. Recycling still as much as we can!

We are still needing to home school K and encouraging her to keep fit with PE Joe and Leilah Isaac on Youtube.

Isolation days have also been a great opportunuty to keep up with family and friends. I have spoken to rather than texted family and friends more this week than I have all year.

Then there is the numerous ‘amusing videos’ being shared to lift spirits . When we receive one we immediately want to share those videos to several whats app groups and friends/family, even resharing it back to the people that sent it to us as we eventually forget who sent it in the first place.

Catching up with the latest news on Covid 19 on Television and social media has been overwhelming too but needed to be done. I almost felt irresponsible as a British citizen and medic if this wasn’t done and shared.

There isn’t enough hours in the day to do it all! Not even in Lockdown. How can this be? How did we find time to work in the last few weeks!

We must just be a society who without realising it, seek out gaps in our day and then quickly fill them up with further events/activities. We are subconsciously wanting to progress in our lives and open ourselves to new experiences.

We are probably also a society that needs routine to get our day going. We need to keep busy to feel useful. We need to be doing something every minute of the day, even if it means picking our phones up to catch up on latest notifications.

I think it’s great we are all able to keep life going no matter what the circumstances are. This helps with our physical and mental health. It’s good to use this time to take up a new hobby, learn a new language, write a book or even start a blog! It’s good to challenge hidden talents and to think out of the box. It’s good to be creative.

However I think it’s also Ok to be a couch potato and to catch up on Box sets of Friends, Glee, Luther. It’s OK to sit and watch the kids playing. It’s Ok to have a Pyjama day mid week.

I notice this morning many churches are now streaming live morning services too which I think is so important for all of us whether we are regular church attenders or not.

We are fortunate to be isolating with technology, entertaining us, informing us and connecting us.

Technology has definitely made M’s week go quickly. It gave her time with her phone, ipad and computer. No time restriction made. She deserved it

We can’t wait for M to come out of her room. I think I might break the rules of social distancing and give her the biggest hug ever before I take her technology away from her for a few hours!

M may or may not have Coronavirus, but it somehow feels like a trial run when and if things get worse.

Stay safe everyone.

SHIELDING

This photo of my daughter K was taken on Mother’s Day. We celebrated it in the simplest manner as most Mums did this year. I am J, a Mum of 2 daughters K, aged 18 and M, 12, wife to N and I am a health professional. This is my first blog on my first blogsite.

I have written a couple of articles in the past that have been featured on social media and a magazine. I am also in the process of writing a book about another life changing experience we encountered a few years ago.

I have now decided to start a blog as we see ourselves being drawn into worrying times with Covid-19. A situation where no matter how much we do to protect ourselves and our loved ones, no matter how we educate ourselves about it, no matter what age or how healthy we are, we could still be infected with this virus.

My family and I have been extremely cautious in the last few weeks as we noticed the situation  in the UK escalating. Washing hands, cleaning surfaces, social distancing, creating a room so that if one of us developed a fever/dry cough we could isolate ourselves and teaching the girls how to cook for themselves and to be even more independent.  We have been preparing for a life indoors for a few weeks now. We now find ourselves in the midst of a Coronavirus Pandemic.

My oldest daughter K is a vulnerable adult, with underlying medical issues and Down Syndrome.

The girls have always lead a sociable life attending various after school clubs and meeting up with friends. They also love school. N and I have busy jobs and when not at work, as most modern parents, we are busy with home life.

As this crisis was getting closer, we took an independent decision to take on Social Distancing. We avoided crowded shopping centres, supermarkets and also started online piano and singing lessons. We spoke to the girls about how to protect themselves; we stopped meeting up with friends and encouraged face time. We were avoiding unnecessary contact with people.  Work and school were the only reasons for leaving home.

We were relieved when schools closed as we felt that would definitely prevent spread with the virus even though children may have mild symptoms or none at all.

Our first day of home schooling went well. The idea of online schooling with teachers teaching from their own home was an exciting experience for M.

Being 18, K normally enjoys spending time on her own, or with friends. I however managed to spend time with her yesterday trying to help her get into a routine for the next few months. She loves routine. She loves school. I had to make her understand that it is now our routine to do school work at home. Thankfully it was as successful as it could be.

However what I did not expect was a text saying  she is one of the 1.5 million people that fitted the ‘Extremely Vulnerable’ Group who needs shielding for 12 weeks. This meant we needed to make even more changes in our lives to protect her. The guidance is much stricter and it is a scary thought that my 18 year old is at the highest risk if she gets Covid 19.

According to the ‘Public Health Guidance’

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Shielding is a practice used to protect extremely vulnerable people from coming into contact with coronavirus. The Guidance states..

You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you receive your letter. Please note that this period of time could change

There is also further guidance on how to manage ‘shielding ‘ one self if they live with someone else eg not sharing a bedroom/bathrooms, others washing their hands regularly, limiting time spent together in shared spaces, regular cleaning of surfaces, eating in their own room, using separate towels etc, the list is long but all makes sense.

K lives in a home with 3 other family members, she has a learning disability and she is a sociable child. All these factors makes it diffcult to follow every single piece of advice but as a family we owe it to K to give it our best effort , along with protecting her mental health.

It might be difficult to make her understand why she is unable to step out of the house for 12 weeks. She understands there is a virus around. She understands she needs to wash her hands often and change her clothes daily. She understands that she has to learn at home and not at school at the moment. She understands that she can’t see her friends but she has to Facetime them. She understands that we need to sit a distance away from each other. She understands that once again her holiday to Florida isn’t happening.

Maybe she understands more than I think. K went through a life changing event 4 years ago. Her life came to a halt with no warning.

This time, she has been warned. This time, she has been given time to prepare. This time, she isn’t doing this on her own and instead with the rest of the world.

This time it is not going to last as long. This time Florida will be rearranged to next year and not 3 years later. This time she feels well and she is at home with her family. This time she is ready.

The four of us have been distancing from each other as much as we could . I will be needing to take a break from work for a few months as I need to care for her and need to consider remote working.

My husband and I are also concerned about how our girls will cope if we are both taken ill.

We are trying to eat healthily and exercise to increase our fitness levels, hoping this will help with recovery when we get the infection

Every day we read real life stories that tell us that anyone can be infected and deaths have been reported in various age groups.

The real life stories and seeing videos and photos of those affected makes it all so real and sad.

My thinking is to take on every bit of advice given, do everything you can and listen to your instincts, so that one day you do not say to yourself..’I regret not doing …. or I wish I had done…’.

Please read the guidance if you have had a text from NHS Coronavirus like we have.

We need to #staysafe #isolatetoprotect #socialdistancing to help get through this .