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

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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 ?

A different kind of holiday

So three and a half years ago our disabled son, 18, at the time, had got to the stage where he had outgrown the family home and he moved into a lovely care home within the town. We tried to give him as normal life as possible before that would have included family holidays at the seaside. He loves the seaside!

A few weeks ago my husband came up with the idea of taking him away for a few days, while our daughter, who also has learning disabilities, was in respite. This was the only way we could manage it as well as taking my mum with us as an extra pair of hands. 

We spoke to the home and got permission for our son to pay for this.

So first we decide on what sort of accomdation. Most self catering accommodation only do week lettings and that would be too long.

As a couple we have used Premier Inn quite a few times now and are generally impressed with their service.  So then we had to decide on a destination. Worthing had a premier inn right on the sea front and also had a car park. Worthing  is generally flat with a nice flat and long promenade for pushing wheelchairs. We then had to ring Premier Inn to negotiate as generally they have 2 adults only per room and our son needed to be in the same room as us because of his disabilities. They told us how to book it on line (so we could get the best deal) then call them back with the reference number and they would make a note in our booking about room arrangements making a note also that we wanted a room with a sea view.  We went for premier inn meal deal for £23.99 per person (children eat free by the way) which included a two course evening meal with drink and their buffet breakfast which includes continental and full English. A very good deal! So that was it all sorted. Three nights away with our son

I must admit I was feeling excited and a little overwhelmed. Our son needs assistance withe dressing, he is doubly incontinent, quite a challenge if behaviour is challenging, he is also epileptic, and usually fits overnight. He takes medication for this. Over the last three and half years we have seen him for a few hours at a time so haven’t had to deal with this in any big way for three and and half years and for 3 nights and 4 days all this was going to be our responsibility again.

So the day dawns, a wet and miserable day. We collect our son. A journey which should take two and half hours driving time took us 4 hours driving time. Massive delays on M1 and M25 but our son remained calm and content, though he was obviously excited about coming on holiday.

We arrived at the hotel and our son immediately went onto his bed, which was in a bay window, looking out to sea. He was very content. After unpacking and a cuppa, we went for a walk by the sea before tea. The weather had now cleared up and the sun was putting in an appearance.

Tea time went well. Our son made it clear he wanted a steak. He is non verbal, but he managed to communicate this really well. He had steak every night which he enjoyed, which is good as it’s also fairly clean! One of the waitresses was really good with him and over the three nights there was quite a rapport between them.

Evening meds came then bedtime and actually I was falling back into all the responsibilities easily. Between tea and bedtime our son was really content sitting on his bed looking at the sea

He woke about 7:30 next morning and came over and cuddled up to us in bed (King Size Bed!) and had a lovely contented smile on his face.

NWe all enjoyed a nice leisurely breakfast then went out a along the prom and stayed out for most of the day. One bonus we discovered is that Worthing has a  Changing Places facility which was a really big help when out and not close to the hotel. The weather was great and we had a lovely day. At tea time our son was a little hyper, he threw a plate on the floor and did a lot of high pitched screaming. After tea we took him for a ride in the car and this calmed him down he sat on his bed looking out the window till bedtime.

Next morning at breakfast he was a little hyper again. Throughout the day we had a few spells of challenging behaviour and on one occasion 3 of us struggled to change him. Having said that most of the day he was pretty good, we have certainly had worse days with him. We got tickets to go and see a blues band in the evening he was really good while he was there and he enjoyed it.

He was nice and calm when we got back to the hotel and settled down easily at bedtime.

At 2am he had a cluster of 3 seizures, which we felt he had been building up to the previous day.

Breakfast the next morning was a much calmer affair. After breakfast we packed up and travelled home, yet another slow journey but not quite as slow as the journey there. 

We feel on the whole the holiday was a success and would do the same again.

We dropped him back home and for an hour or 2 I felt a little lost without him, but enjoyed a nice lazy evening!

We had time to see  just how much our son has developed, he shows a lot more interest in things around him. One day pointed to a seat that was taped of and wouldn’t continue walking till I explained to him that it was taped off because it had been painted and was wet. Another time when we had bought something he wanted to look in the bag and have a look. 

We are so pleased we took our son on holiday it did us all the world of good