2020. What was that???!!!!

I’m not fussed about New Year celebrations, I can either take them or leave them, however if I find myself going out I always have a good time. Most years I go to bed at my bedtime and get woken up by the fireworks at midnight, wish my husband a happy new year and go back to sleep.

However coming into 2020 I was feeling optimistic about the year, our daughter with Downs Syndrome was due to be leaving school in the summer, we knew which college we wanted her to go to and knew we potentially had a battle on our hands but we were excited and full of optimism for our daughter about the year ahead. I even put in my Facebook status ‘2020 bring it on!’ Safe to say I didn’t mean bringing it on quite on the way it did!

The year started pretty well and much to our surprise our daughters college placement was agreed straightaway beginning of February. So thankful as it turns out that we didn’t have that battle on top of covid. The powers that be can move slow enough as it is without pandemic getting in the way! I really felt we needed to take our daughter out for a meal the evening of the day we found out. In often look back on that evening and so glad we took the opportunity to celebrate, we didn’t know then, that soon we wouldn’t be able to do that. We had other celebrations after that, we had our sons adoption day (out for a family meal) then the last ‘normal thing we did as a whole family was go out for meal for our daughters 19th birthday. A few days after that our world started changing, Covid 19 was taking hold. People’s motives for buying toilet roll was even being judged!

16th March care homes were told to close to visitors. We were devastated as this meant we couldn’t see our son who has severe learning disabilities. We started having video call with him which were interesting being as he’s non verbal but they did have some success as our son learnt to respond to them, largely by smiling at us and touching the screen.

20th March school and hospitality closed meaning people couldn’t go out for Mother’s Day, then 23rd March a complete lockdown was announced and we were only allowed our for essential shopping, exercise or medical reasons, later the government also realised some people would need to leave their homes to escape danger.

We were in lockdown all over Easter, (in April)which like most of lockdown up until that point, was a beautiful and warm sunny weekend and spent a lot of that time outside in the garden. Although the nicer weather made me yearn to go to the seaside, which obviously we couldn’t do, it did make the first lockdown a whole lot easier to cope with. At the end of April (still in lockdown) in I turned 50, I had planned a party but this was now against the rules. Under the circumstances it was a lovely day. My husband and daughter spoilt me and had done a lovely video clip.

In the middle of May we were finally allowed to meet one other person outside of the house in a park. We were allowed to sit in the park and have picnics in the park. It was bliss!

Beginning of June we were allowed to meet in peoples gardens, a few days into this and the weather started getting wet!! Also in June some students were allowed my back to school and our daughter was allowed back. She was just in for 2 days but it helped her mental health enormously and she was able to Finnish her school career properly, all be it without a prom etc.

Everything was gradually opening up and at the beginning of the summer holiday we were finally allowed to go away on holiday and we had a lovely family holiday in North Devon. Then a few weeks later hubby and I managed to get a much needed few days by ourselves.

In August we were able to see our son through a fence but it was heart breaking not being able to hug him. Touch is how he communicates.

All through this time we were trying to find out what was happening about college but nobody really knew which was a bit unsettling. However in September our very excited daughter started college.

Also in September we managed to celebrate our wedding anniversary with a meal out and in October celebrate hubby’s birthday with family meal out.

However cases of covid seeing a worrying rise again and November brought a 4 week lockdown, though not quite as strict as March, a few weeks before that all the country were put into different tiers according to how high the infection rate was in the area. We were originally in tier 1 which meant we could only meet in groups of up to six people. During the lockdown they decided that every adult with Down’s syndrome was clinically extremely vulnerable even though our daughter doesn’t have the health conditions that can be attached to Downs Syndrome. This meant she was wasn’t allowed to college and has an exhausting few weeks of online learning

Coming out of lockdown our area was placed in tier 2 meaning we could only meet people outside but no more than six. We could meet in peoples gardens, so thick coats and blankets were the order of the day. Our sons home had started making plans for christmas and assuming we had negative Covid test before hand we could bring him home on Christmas Day. We were so excited. Then the home decided that with the lateral flow tests, assuming our tests were negative we could also bring him home for his birthday and we had a lovely time.

It wasn’t long before we we were in tier three but this didn’t affect christmas plans

19th December was our first day in tier 3 (no indoor household mixing and can only meet up to 5 other people In parks) and the governement were becoming aware of a new variant of covid that was even more contagious. They made a new tier 4 which our area was going into. Only able to meet one other person in public outdoor spaces and while the original christmas relaxation of rules changed so it was only for one day tier 4 wasn’t able to mix households even on Christmas Day. This meant we couldn’t have our son after all. We were absolutely gutted! We had a socially distanced walk with him on Christmas Day. Christmas was very quiet christmas.

I mentioned at the beginning that I’m not fussed about new year, largely I feel it’s just another day. The problems you have on 31st December don’t just disappear on 1st January and I rarely say I’m glad to see the back of year cos most years have had some good and some bad both of equal measure.

As I sit hear during the last few hours of 2020, still in the throughs of covid I know when I wake up tomorrow in 2021 Covid will still be here. We are hoping that the vaccines still take effect and we can get back to doing life without restrictions.

Not just this year but every year there are still issues we take into another year. Our biggest enemy is often ourselves and how we react to things. However what we can take into next year is the lessons we have learnt, which have made us better people.

Here’s hoping and praying 2021 turns out to be a better year for us all.

Christmas 2020 is almost here

‘Twas 6 days before Christmas and up and down the country people tuned in to hear the latest Christmas restrictions.

For some, the meeting with family was restricted to one day and others not to mix with family outside the home at all.

Up and down the country there were tears of grief and disappointed. How did it come to this?

Two thousand years ago in Nazareth, a young girl became pregnant with the Son of God.

While heavily pregnant had to make the journey to Bethelehem on a Donkeys back.

No where to stay in Bethelehem but an offer of a smelly stable.

The son of God born in a dirty and smelly stable, how did it come to this? Not the best start in life for the Son of God

It must have been the way God had allowed it to be, but why?

Being in a stable rather than a palace made it possible for anyone to visit.

Despite the bad start this baby ended saving the world.

Lord this Christmas use our grief and disappointment to change our hearts towards others and please shine your light and love to family we can’t be with this Christmas

The Covid 19 effect when your child has additional needs and is leaving school and starting college

We started looking over 12 months ago for a college for our daughter. Unfortunately the one that we felt was most suitable was ‘out of area’ so we had to put a strong argument accross. To be honest we were expecting a bigger and longer fight but the funding for the placement and transport was agreed back in February. In light of what’s been happening since then we are so glad this was agreed in good time .

One of the things we liked about this college, that although she was in the additional needs department there was opportunity for her to mix with other students at lunch time and also to access vocational courses with support

What is slightly easier for us at this time compared to other families with school leavers is that this is not dependant on exam results.

When Boris announced the closure for schools in March, like a lot of families across the country we didn’t know if 20th March was actually her last day at school. And I know for many people that turned out to be the case.

Also as time went on didn’t know what was happening about college and finding out was difficult as nobody was there. There has been no chance for transition visits

A major part of what our daughter did at school was life skills which included learning the value of money and shopping for a meal. As our daughter needs somebody with her when she shops, due to trying to keep numbers down in shops, her visits to shops has been limited and teaching value of money has been difficult now that we have to do everything contactless .

Also our daughter has missed out socially as she can’t just go and meet her friends. Any clubs that facilitate this in a aware environment have had to stop.

So when our daughter had to chance to return to school for 2 days a week in June we agreed to let her go and we are glad we did as it did her a lot of good.

Like every other school leaver this year there were no big celebrations.

We managed to enrol our daughter at college last week and she starts 9th September and we still feel positive about the placement. However what is college going to look like for our daughter now.

Everybody will have to stay in their own areas all day. They’ll be no mixing with others students at lunch time. They’ll be learning to shop for a meal and they’ll be no accessing other vocational courses.

All these things are vitally important to our daughter but due to this cruel virus she’s missing out on all this basic stuff which takes so much longer for her to learn than the rest of us.

Hopefully this won’t be forever and it won’t be too late for our daughter.

Lockdown Psalm

At our online church service recently, it was suggested we write a psalm about our feelings during lockdown. I don’t consider myself a very creative person, so much to my surprise I found I immediately had something going round in my head and here is the result

A virus threatens  health and life style
I panic then realise
This is the day the Lord has made, I will rejoice and be glad in it

I can’t see my son
Lord please don’t allow Lock Down
But this is the day the Lord has made
I will rejoice and be glad in it.

Schools are closed indefinitely
Lock Down comes
How am I going to cope?
But this is the day the Lord has made 
I will rejoice and be glad in it.

Weather is Beautiful
I want to go to the sea
But the birds are singing
And
This is the day the Lord has made 
I will rejoice and be glad in it

Where is all the extra spare time gone
It seems I’m coping ok
Thank you Lord
This is the day the Lord has made
I will rejoice and be glad in it.

Missing friends and family
Social media just doesn’t make up for it
How much longer Lord?
This is the day the Lord has made 
I will rejoice and be glad in it

Will my daughter ever get to celebrate her last day at school?
Will we get on holiday?
I don’t know 
But
This is the day the Lord has made 
I will rejoice and be glad in it

Summer will be her soon
Will we be able to have days out
What a waste of a summer if not
Then I remember 
Each day will be 
A day the Lord has made
Therefore 
I will rejoice and be glad in it

You see
Each day the Lord has made
Is not a waste
Therefore
I will rejoice and be glad in it

I’m still Mum

So our son who’s severely disabled is 24 in 2 weeks time.

On Saturday afternoon he was probably the most poorly he has been in the almost 6 years since he left home. He was in and out of seizures all afternoon, sleeping heavily between them.

The most difficult thing in parenting him was realising he had come to the stage where he needed to move on and let others take the bulk of his care.

The second most difficult thing is not always able to be there when he’s poorly.

We did pop in on Saturday for an hour and half. He was sleeping very heavily and I just wanted to cry I hadn’t been there. He woke up after a little while and was really pleased to see us, that was a very precious moment. He soon went into another fit and heavy sleep. It’s not nice seeing him like that but I was pleased to be there for him.

When he came round he tucked into a mars bar and was an awful lot better.

We then had to leave as it wasn’t fair on his sister who is 17/ nearly 18 and has Downs Syndrome. Even though he was better it was still difficult leaving him. He receives very good care where he is and I know God looks after him better than I can. But I still wanted to be there. I’m still his Mum.

We saw him in church yesterday and he’s definitely on the mend. But have been feeling meh ever since, probably for the reasons I have already mentioned but also combined with the fact that our daughter will soon be 18 and all the meetings that brings when a child with a disability turns 18.

Both our children are challenging in different ways. But we do have some precious moments even when things are difficult.

Once a mum always a mum whatever happens that will never change

To my daughter with Downs Syndrome who dreams of getting married someday

I see you get excited when you watch other people get married. I hear you tell us excitedly what you want when you get married.

I watch and see you dream about getting married, I know other people with learning disabilities have managed it. While I would love to see you get married to the right man (and be mother of the bride!) I think achieving this is going to be much harder for you than for your peers. I know you don’t see the obstacles and I would really love for you to achieve your dream. Any mother wants to see their children achieve their dreams and hurt when their children are disappointed with where life takes them. I realise that even if you didn’t have a disability it’s still not a foregone conclusion that you will get married. I guess because of your disability I’m gearing up for the pain of that not happening earlier than some mums would.

Please realise when you dream of getting married it’s not all about the wedding the day but about the life long commitment you have made to each other. This is why it’s so important you find a man who loves you like he will love no other woman and who will look after you to the best of his ability and who you will love and care for for the rest of your life. We will help you in that.

Then what about children? I see you with babies and you are so loving and caring towards them, you are a natural. It breaks my heart because at the moment I believe this will be a step too far for you. At the very least you will have professional people assessing whether or not you are capable of parenting. Even if you are capable, that’s a lot of pressure to be put under.

So daughter I really hope that one day you find a life long companion who will stop you from getting lonely.

If this doesn’t happen remember you are a beautiful person in you’re own right. You will always be loved for being you no matter what you achieve or don’t achieve . You will always be a princess.

Love you lots

Mum

Kingstock Music Festival

So we’re always looking for idea to keep our 16 year old daughter with Downs Syndrome amused. 

We’ve been fans of Big Church Day Out since we started going on their second year.  I love the concept of Big Church Day out, But  it has been increasingly difficult for us as a family as the even gets bigger and our daughter gets older, fighting for independence she’s not capable of, especially with 20,000 plus people around. So for now, at least,we’re giving it a break.

A couple of years ago we heard about Kingstock Music Festival from our worship leader Marc James. It’s local to us, about 20 mins drive away from where we live so we don’t have the complication of finding accommodation (also more difficult as our daughter gets older). They do have camping  at the festival. As we didn’t camp I can’t comment too much on the camping facilities apart from knowing there were showers and toilets for campers. I can comment on the other public toilets at the event and in comparison to other outdoor festivals they were brilliant. Always plenty of toilet roll, paper towels and soap. And they always flushed properly!

Our first visit to  Kingstock was last year, when we just went for one day. We were impressed with the friendliness and laid back atmosphere. They have 3 stages. One stage plays at a time so you move from one stage to the next during the day.  It’s very compact so there is never too far to walk. This means you don’t have to choose which bands to listen to or not to listen to. So you feel you are getting the most out of the festival . Also as the festival is a few hundred people as apposed to a few thousand, so if you  want to sit a band out, you can usually find a quiet corner to sit in. 

At the main stage there is plenty of room to take your chairs and other stuff and it’s safe enough to keep it there all day and not too far to walk if you need anything. Another stage has straw bales to sit on  and another one is inside with chairs to sit on.

In terms of performers, many you would class as ‘undiscovered artists’, some are better known. Over the 2 years some of the artists that have performed ( some have been both years others just once) are:- Vera Cruz, Dave Griffiths, Vamoosery, Rebecca Vyce, Matt Mcclerey, Daughters of Davis and many other brilliant musicians and song writers

This year we went for both Saturday and Sunday (it starts on the Friday evening ) and we felt really refreshed by the end of the evening . It was nice and safe for our daughter and we’re able to allow her a bit of independence . You make new friends. Everybody got to know our daughter.

Through out the festival, we were brought into intimate times with God, having fun with secular songs and tsinging familiar songs in worship. 

I would highly recommend Kingstock. Find out more at: Kingsstock Music Festival

A Christmas prayer

Dear God

With one thing or another I am so ill prepared for your Birthday this year. Please forgive me for not being full of Christmas cheer . I ask for you to bring your peace and joy.

Lord I know of others struggling this Christmas . Those who are by themselves. Those who have family issues. Those in hospital. Those who are grieving imcluding those who face sudden and tragic loss.

Lord I look around so much hurt and pain, wishing I could do more to help, but I have my limits

So Lord please draw close to the hurting 

Amen

A Christmas prayer

Dear God

With one thing or another I am so ill prepared for your Birthday this year. Please forgive me for not being full of Christmas cheer . I ask for you to bring your peace and joy.

Lord I know of others struggling this Christmas . Those who are by themselves. Those who have family issues. Those in hospital. Those who are grieving imcluding those who face sudden and tragic loss.

Lord I look around so much hurt and pain, wishing I could do more to help, but I have my limits

So Lord please draw close to the hurting 

Amen

Thoughts on World without Downs Documentary

I’ve been thinking a lot about the above documentary that was on yesterday evening. Got so many thoughts going round in my head that I thought I’d express them here.

Just to warn anybody who’s not seen it yet you might want to leave reading this until  you have seen it as  I don’t want to spoil it for you.

This documentary was made in light of the new easier test that’s out to test for Downs Syndrome.

Sally Phillips, who is  famous for her role in the Bridget Jones film, among others, has a 12 year old son with Downs Syndrome. 

In the documentary she goes to medical professionals to talk about this test.

I was horrified to hear one doctor talk about a person with Down’s syndrome as ‘being a burden that will go on for a long time’ (or words to that effect). Then the lady who I think played a part in inventing the test asking ‘your son will outlive you don’t you wonder what will happen to him in the future. Can I just point something out Mrs professional that there are a lot of parents who are concerned about what will happen to their children in the future and they don’t all have children with disabilities Some might have children who are addicted to drugs or alcohol. Others are concerned for their children financial security. So sorry , wondering what the future holds for Sally’s son or my daughter come to that is not a good enough reason to abort them!

The scary thing is that the medical profession who are carrying out these tests and in some cases bully women, who have a positive test for DS, to have an abortion, is the  same medical profession that we entrust our child’s health to.

I am pro-life, however I do not judge anyone for having an abortion, I know people don’t go into it lightly, and sometimes the counselling people receive  is biased towards terminating pregnancies. Many aren’t told of the emotional effect or physical effect of abortion.

Sally interviewed a very brave lady called Kate. She was pregnant with her second child. She had her first child aborted as tests had shown she was at risk of having a baby with Downs Syndrome. She spoke about how they had to stop baby’s heart, it sounded horrific. Watching Kate re tell this, you realised she was clearly a mother grieving over a lost child as any mother who loses a child anytime after they had given birth. She explained that she had watched you tube videos of the worst case of DS and those who were enjoying life. Sally showed her another clip of a young lady with DS who was doing well at gymnastics . Kate commented on how inspirational she was, but was aware that she had to work harder to achieve her goal. I couldn’t help but think, even those of us without disabilities struggle at times. We might have struggled/ hated school. Stuck in a job we hate.That is life, it sucks sometimes, but my experience with my daughter and others I have met with Downs Syndrome is that they actively enjoy the challenge.

Is the world trying to get rid of people that are ‘imperfect’  or people who can challenge us, show us how to appreciate the simple things in life and encourage us to be kind to each other.

Both my children are adopted, our son is our eldest, he has profound and multiple learning disabilities including  autism, mild cerebral palsy and badly controlled epilepsy. He is non verbal but has lovely ways of communicating. He is very loving. Despite all his problems he is very discerning about people, so be warned!! 

I love his happy noises, I love his smile, I love watching him enjoy a rough sea, I love seeing him play with a windmill. Can you really get anymore perfect than that? He is now in a home for adults with learning disabilities where he continues to bring a lot of happiness to those around him. But still relates to us when we seem him every week.

Our daughter is our youngest. She has Downs Syndrome. She is 15 yrs old. She is doing well with her reading. She’s good at cooking (very useful)

I love watching her dancing, watching her have fun in the swimming pool, her sense of humour , her zest for life and sense of humour . Again what’s more perfect than that.

The UK has prided itself on being inclusive, but as this programme showed there are still some not so good attitudes around.

I have sat at medical appointments and in a and e with my daughter and seen people who arrive after my daughter be pulled round in front of her. I had to really persuade her eye consultant to refer her for an operation to unblock her tear duct, which was causing her some distress.

Sally made a good point last night that with all this money going into researching this test could be money spent on support for these people, in view of all the cutbacks happening for people with disabilities this is a good point don’t you think?

Please people treat everyone equally with respect.

I will close with a final thought. Those who know  our children can you imagine a world without them ?