Tuesday, 29 January 2013

Sisters

Today 29th January is Laura's birthday. She is 4,000 miles away in North Carolina so here are a few pictures of Laura & Emily down the years - sisters together or "tisters" as Emily always used to say.
No more words required.....



















 


Wednesday, 23 January 2013

A DATE TO REMEMBER

How many parents can say they were there on their child’s first date? I can...…keep reading and I’ll tell you more.


Have you been watching Channel 4’s The Undateables? C4 describe it in the following way “people living with challenging conditions are often considered 'undateable' - this series meets a few and follows their attempts to find love”.

It’s an awful title for a TV programme, particularly as it is so inaccurate. I mean – they are often considered undateable by whom? If we’re honest we’re all undateable if the spotlight were to be put on particular aspects of our lives, our eating habits, bad language, fashion sense, rudeness and that we fart in bed when we think our partner’s asleep! However, we usually hide these aspects of our lives away while we are in the throes of courtship and bring the bad stuff out once we’re married! Anyone with me?

If you can manage to get past the title there are some great people on there - and I watch almost squirming, hoping against hope that it will all be positive but knowing somewhere there's likely to be a portrayal of disability that says "odd, different, weird" that many of us parents are working so hard to overcome. This week The Undateables featured the wonderful Kate (aged 29), looking for love and finding it with the help of a huge personality and a cunning plan to woo her man with some beautiful poetry she’d written herself especially for the occasion. What was so undateable about Kate I hear you ask? Well - Kate has Down’s syndrome! Er.. hello! – this is the 21st century, people with Down’s syndrome have equal status with anyone else, as do all people with disability or special needs. So, yes, they can have an expectation of love, happiness, marriage and a life of fulfillment. Kate is a beautiful young woman, with a home, a job, independence, personality, wit, charm, humour……and the need to love and to be loved. I have seen many young people on a night out staggering from one gutter to the next, vomit down their chests who are far far less dateable than Kate or anyone else on this programme.

It soon became apparent to their teachers that there was something in the air (and it wasn’t the chicken korma drifting through from the dining hall).

So let me tell you about my daughter Emily & her boyfriend Jono. Emily is 20 and has Down’s syndrome; Jono is one year older and also has Down’s syndrome. They met at school when Emily was 16. It soon became apparent to their teachers that there was something in the air (and it wasn’t the chicken korma drifting through from the dining hall). No, Emily and Jono had hit it off. Laughing together, wanting to be with one another, being in a better mood when the other was near. Sound familiar?

So the staff suggested to us that Emily & Jono might want to go on a date. A date? Wow that sounds scary. I’m ultra-protective Dad! There must be another way. But Emily decided that this would be a good idea and who are we to stand in Cupid’s way? How could it work though as both Emily & Jono need a carer when out in public so we contacted Jono’s parents (who we had never met) and fixed a date at a pub on neutral territory.

We approached the evening with trepidation. It could go so terribly wrong – what if we have absolutely nothing in common except a child with an extra chromosome? Well, we need not have feared. We arrived on time. Jono was already there looking as smart as you could wish - hair gelled, shirt, jacket and presented Emily with a kiss and a lovely bouquet of flowers. Parents are not supposed to be there to witness such things on first dates but this was just priceless. Some things you see and wish you hadn’t and others you don’t but wish you had. Well this was one of those moments you’re not supposed to see but are so glad you could say “I was there”.

Emily & Jono ate their meal and snuggled up, faces covered in the remains of a shared chocolate ice cream, chocolate fudge cake and chocolate sauce dessert.

We introduced ourselves to Jono’s parents and put the lovebirds on one table together while we sat down to eat a meal with Jono’s parents - complete strangers until two minutes ago and chat as though we had known each other for years. It was quite surreal. Emily & Jono ate their meal and snuggled up, faces covered in the remains of a shared chocolate ice cream, chocolate fudge cake and chocolate sauce dessert. A successful first date!

I asked Emily this evening if she could remember her first date with Jono and she told me the name of the pub and told me, "When Jono touched my heart it made me feel like a confident lady."

Suffice to say that over 4 years later Emily & Jono are still going strong. They have all the desires that any young couple would have – yes all the desires! They have it all planned out and regularly ask each other to marry – they expect to get engaged, get married, find a home and build a life together. They are very very dateable! And I challenge Channel 4 to film them and tell me they’re not!

And when they are married, no doubt the following words will be read, as they are in so many wedding ceremonies. And as they are I will shed a tear and thank God that he brought Emily into my life to show me what love really is – why don't you join me and say these words out loud, and think of your beautiful child as you do:

Love is patient and kind.
It does not envy or boast and is not proud.
It does not dishonour others, it is not self-seeking or easily angered.
It keeps no record of wrongs.
Love does not delight in wrongdoing but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
Love never fails.
 
My ongoing unwritten 20 year study into living with someone with Down's syndrome so far comes to the following conclusion - people with disabilities have the same hopes and dreams as anyone else, the same desires, the same needs, the same craving for independence, acceptance and understanding; the same expectations of life. And here's the thing, they deserve nothing less. So here’s to Kate, to Emily and Jono, to all our children who hope for love and to be loved – however far off it may be - may they find their hearts desire and may we allow them the freedom to do so.
 
With love
Paul   


Emily with Jono on their first date

 

Saturday, 19 January 2013

Who wants to be a superhero anyway?


It’s over 20 years since I entered the world of disability, special needs, additional needs, differing ability – however we want to describe it. It’s a world that existed before I existed but a world I really knew nothing about until my wife, Sheron, and I were given the news “Emily has Down’s syndrome”.


 
During the past 20 years I have met many parents who, like me, walk through this world with an attitude of “I’m not quite sure how I got here, but I’m glad I came”. Of course it’s not a world we visit for a time and then walk away from because once you’ve been there’s no going back – no matter what happens. During this time Sheron and I have had what I call the “terrible privilege” of supporting local parents through the aftermath of the loss of a child - our only qualification to offer this support is simply that we are from the same world of special needs. Some of those parents remain as trustees for our local Down’s syndrome support group. They could easily walk away and re-join the world they were part of before – except they can’t; there is no going back when you have been touched in this way by our beautiful children.

 
As parents, the way we support each other makes a huge difference to our lives. Who can say that they have not benefitted from the support, the love or the care of another parent from time to time, or in my case from day to day as I interact with some fantastic parents on Twitter. We are not superheroes. I am not Superman, you are not Wonder Woman, Batman, Mr Incredible or any other we could mention (if you wear your pants outside your trousers that’s probably just tiredness not a sign of superpowers). We are human, we get emotional, we get angry, we lose it. There are times when we simply can’t cope………and that’s ok. It’s ok not to be ok. But it’s important we share with others so that we can help one another through our darker, more challenging days and weeks.

 
If you wear your pants outside your trousers that’s probably just due to tiredness not a sign of superpowers

 
It would be so easy to look at other parents who may appear to have it all together, but they have their down times too. They have their tears, grief and frustrations. We all do. We are all broken. But in our brokenness we find our redemption; in our struggles we discover our beauty; in our hurt we release our compassion. I have found that simply offering to be there can make such a difference to someone else and in doing so we rediscover our worth. We are all of equal value. A scrunched up, dirty, torn £5 note found at the back of your purse is still worth the same as the brand new shiny £5 note from the cashpoint. If you feel like that scrunched up £5 note, you need to know you have the same value as when you feel brand new and shiny. When your chocolaty-faced cherub looks up at you with arms outstretched for a hug they just see Mum or Dad not the superhero you’re trying to be.

 
We have so much to offer one another……...but it has to be at the right time. If right now you are struggling just to make it through the day, struggling to manage the washing, ironing, housework, office work, business, cook the dinner, do the homework, as well as the many challenges that come from having a child with special needs, it’s ok. Just learn to rest in who you are, don’t strive to be someone you’re not just to make it look like you’re a superhero. Learn to forgive yourself, love yourself and find acceptance in being who you were born to be.

 
We are all learning much as we journey through this world and as we pay it forward and pass that knowledge on we change the world for someone else. That’s not being a superhero, that’s you being you and me being me.

 
Much love,
Paul

My favourite superhero stood next to Mickey Mouse

Sunday, 6 January 2013

Highs, Challenges and Hopes

Highs, Challenges and Hopes


The wonderful Hayley at Downs Side Up has asked for parents to comment on the last year and hopes for the coming year and this short blog is to anser those questions. If you don't read Hayley's blog you must do so - I am thinking of asking for it to be made compulsory and possibly added to the National Curriculum. Here goes......

 1) What was the high point of 2012 for you?
There are so many high points living with Emily it is hard to choose just one. However, I think that the highest has been seeing Emily really begin to mature as a young adult (she is now 20). She has started to take responsibility for remembering what's happening at college. She seems a lot calmer in many ways (although she retains her madcap sense of humour). She just seems to be more adult and after 20 years that has been wonderful to see.

2) When was the most challenging thing, the part that tested you to your limit?

Hmmm.....this is difficult. And in many ways that's good as it means nothing has been partcularly challenging or tested me to my limit. However, I think what continues to trouble me is Emily's vulnerability as a young adult with Down's syndrome. She goes to college on a community transport bus or sometimes they send a taxi (without an escort) and one day the taxi driver had set off before Emily had shut the door fully never mind strapped herself in (yes we complained). I get troubled by the inability of people like the taxi driver to see the person beyong the "pick-up". In this context Emily's vulnerability is very evident.

3) What 3 hopes do you hold dear for 2013?
In 2013 I hope that Emily continues to develop as a responsible young adult and particularly that she develops in the training she is having to become more independent (travel to and from college etc). I hope that the blog I have just started writing provides some hope to others from someone who has "been there" - "lives there" is probably more accurate! Thirdly I hope that I can give more time to learn more, read more and write more about Down's syndrome and my experience. And in saying "my" I really mean "our" because there are 5 of us and we're all in this together!

Here's to looking back in 12 months and seeing lots of high's! I hope you do too.

Friday, 4 January 2013

The Best is Yet to Come!


 
Emily was SO excited when we hit New Year and entered 2013. You see 2013 is a big year for Emily. 2013 is the year that Emily has her 21st birthday and boy does she want a party!
 
Emily is a bit of a party girl; she loves to sing, she loves to dance, she loves to eat a buffet (several times if left to her own devices - what is it with Scotch eggs?) She's got it all planned out - the hotel, the guest list, the format - all she has to do is wait until August.............and that's the hard bit. But then we all get a little impatient don't we? When we plan something we can't wait for it to come around, whether it's a birthday party, a holiday, a night out with friends.........but I've learned that there are some things which we value more when we have had to wait for it to come around. 
 
Now, I'm new to the whole blogging and social media thing. It's going to take me some time to find my feet and make this thing look as good as it could look - or perhaps this is as good as it gets! But I have been so encouraged looking at other blogs, at websites, sharing dialogue through Twitter; encouraged to hear from other parents and carers; encouraged to find that there are so many other parents who want to make a difference; encouraged to see how people from different walks of life, different backgrounds, different parts of the country and the world are linking up, helping each other through, joining hands and standing together so that people with Down's syndrome get a voice.
 
When Emily was born we didn't have the internet (How old does that make me feel!) Information was hard to come by (up to date information at least), linking up with other parents was either by chance or through Miss Marple-esque detective work. It was a different world. But it's been worth the wait. I see a new generation of parents rising up, taking action, speaking out to make the world a better place for everyone with Down's syndrome. This is fantastic to see.
 



Emily with big sister Laura - 1995 (not a computer in sight!)


There is power in our collective voice. When we stand together, speak out together, encourage one another, build relationships and friendships in unity and agreement for a cause so much bigger than ourselves, there is the potential for us to change the world for our children and for people everywhere who have Down's syndrome.
 
 
I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.
- Helen Keller
 
The key is patience. There WILL be times when we get frustrated. There WILL be times when we get disheartened. There WILL be times when we think that the battle is too hard, the road too long and the mountain too high.......... But if we choose to be patient, determine to seek out people to help us, share our successes AND our challenges, if we allow our frustration, our disappointment and our anger to be channelled positively into action, we can change the world! We can! It might not happen overnight, it might not happen in a school term, it might not happen without a fight but it could happen if we don't give up and we encourage one another.
 
Numerous times in the past 20 years we have heard the words "we can't do that I'm afraid, it's never been done before" - to which our usual answer was "well somebody's got to be first so it might as well be Emily".
 
Emily has been a bit of a pioneer in Rotherham. Your children can be pioneers too. Don't settle for what others say can't be done - somebody has to be the first to walk a path so that others may follow. I sense we now have a generation of parents who will empower our children to be pioneers throughout our land, changing perceptions, changing mindsets and seeing favour in every area of their lives.
 
May your 2013 be amazing!..........The best is yet to come!
 


Emily on her way to her High School Prom

 



The Snow Queen