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Scott · Joined: 26 Oct 2007 Posts: 11 Location: Edinburgh

Hi,

My name is Scott and I am the new parent of a child with Downs. Louie was born mid September in Edinburgh and is our 3rd child. His brother and sister love him as do we. Fortunately they aren't old enough to understand what is different about their brother, yet. My wife and I are still in a state of shock, broken by periods of denial.

Where do we go from here? I don't know, but talking about it with other dads might help.

Adoption has entered our minds and we have even spoken to the DSS about it, but deep down I don't think it is an option. We just worry so much about the future and about our other two children. We have a beautiful baby in our family now but what about the adult?

It scares me to think of the future and the dreams we may need to give up on. All I know is that I love him and want what's best for him.

Scott

admin · Posted: Thu Nov 01, 2007 12:40 pm Post subject: Re: New dad

hi Scott, and congratulations on finding the forum.

Ross · Last edited by Ross on Tue Nov 06, 2007 10:33 am; edited 1 time in total

Hi Scott,

I'm not a dad, but it's my job up here in Aberdeen to work with dads. I've also worked for about 17 years with kids and adults with DS so I hope you don't mind me putting my bit in, if only to echo what the last post is saying.

Thanks for posting on the forum. There's a lot of new dads out there who will identify closely with what you're saying and will have gained a huge amount from just reading your story (50+ views already by day 2...). Down's Syndrome will place some limitations on Louie, it's true, but not as many as people may think. The list of positive "achievables" will dwarf the other list. Also, depending upon which path you choose to take, there is a lot of support, advice and advocacy out there. Disability may be an area you've never had to know much about so getting the information you need can be a bit daunting. Where do you start? Well, you've made it this far so hopefully this forum will help. You mentioned that Louie was born in Edinburgh...if you're based in the Lothian area, you might want to consider getting in touch with VOCAL ( http://www.vocal.org.uk/ ) as they can be pretty helpful regarding next steps and practical advice. There's always Down's Syndrome Scotland for condition-specific information.

I'll not list everything, as you're probably drowning in information at the moment. Professionals aren't always the best at allowing info to be digested in manageable chunks or avoiding jargon. Thanks again for posting and I'll maybe catch up with you in the virtual pub...

Cheers for now

Ross
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Carers save the UK government £87bn/year

Scott · Joined: 26 Oct 2007 Posts: 11 Location: Edinburgh

I have noticed alot of people have read my post but haven't replied. Maybe that's just men. We aren't as open about stuff as women and want to just 'fix' things rather than discuss them.

But anyway here goes...

My wife took Louie to a Downs toddler group today for the first time. We have a friend staying with us from England so she went with my wife while I went off to work. She struggled. She noticed the physical differences and yes she judged. But she also noticed the love, the smiles and the hugs. She also commented on how it was just like any other toddler group. I'm not sure I could have gone though. Work is a great distraction isn't it.

We have decided to keep Louie in the family. Nobody can bring him up like us or give him the love we can. Just to cuddle and bury your head in his face makes it all go away, for now.

I'm not sure that I am still not in denial but I love my boy. That's all that matters.

Please, if you are reading this and feel you can't comment. Find the strength. I need all the advice I can get.

By the way, he is only 8 weeks old. We have a long way to go.

There. Done.

Scott

Ross · Posted: Tue Nov 06, 2007 10:23 am Post subject: News article

http://news.independent.co.uk/health/article3041504.ece

Hi again Scott, this link is to an article from the Independent on 9th October from a dad whose daughter, Mia, was born with Down's last August. I don't know if you've seen it already but it details what their first year was like, with all the highs & lows and where they are at now. Hope you find it interesting.

Best wishes

Ross
_________________
Carers save the UK government £87bn/year

catthomson · Joined: 17 Jul 2007 Posts: 3

I, like some of the other people who have responded to your e-mail work in the children's services field.

If you are in the Edinburgh area it might also be worth contacting SNIP, the Special Needs Information Point attached to the Royal Sick Kids Hospital http://www.snipinfo.org. They provide support and information for parents and families and might be able to put you in touch with local support groups. Also Contact a Family Scotland are also great for helping you to meet parents from your local area that may also have struggled with some of the feelings you are having.
http://www.cafamily.org.uk/scotland.

On a personal note my son attends a local primary school with a little boy with Downs Syndrome and he is very much part of the local school and community. He is always involved in lots of the school and afterschool club activities

SteveP · Joined: 06 Dec 2007 Posts: 1 Location: Isle of Wight, UK

Hi Scott
Six and a half years ago I felt a bit like you do now. Was it my fault? What did we do to deserve this happening? Guess what it was the best thing that ever happened to me.
I have identical twin daughters (Catheryn and Lisa) with DS who are 7 next year; I am 55 and these are my 1st children. (Left it late but got there in the end).
I am glad that you and your wife have decided to keep your son. Have you got some good times ahead of you.
Everything is an achievement for a DS child.All I have missed was their 1st smile and steps. Since leaving work to become a carer to Catheryn I haven't missed a thing.Their 1st birthday was a hoot so many friends and playmates.
The biggest problem is other people and their reaction to your child. I was once told by a very sweet lady that she thought I was brave adopting foreign children(she thought they were Korean or Chinese) I still laugh now when I think of it.
People often say to us that it must be very difficult to bring them (?) up. It's not it's just that it takes a little longer to get there.
As you can see we live on the Isle of Wight and as it's a smallish community virtually everybody knows the girls. They have made many friends at their school but we are now looking at moving them to a special school as they are starting to struggle with the curriculum in Year 2 and it is causing frustration tantrums and various other emotional problems form the girls.
Don't worry about your child let him have a go at things any other child would. Our 2 love horse-riding and theme park rides.
Just been told by the wife I've got to go now. Good times are ahead and I know that you will look back and wonder why you were so worried.
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Eagles may soar but Weasels don't get sucked into jet engines!

Scott · Joined: 26 Oct 2007 Posts: 11 Location: Edinburgh

It's been a few weeks since I posted anything so I thought people might be interested in progress.

Louie is piling on the punds and thankfully he has avoided some of the earl health problems. We have had thyroid and heart checks and so far so good.

He is starting to respond to voices and my wife has him doing his excercises to build his muscles up.

We are now in family mode and he is just another part of the family. I have only just told a colleague our new baby has Down's so that's one hurdle over with. Word may get around the office but that's ok now. I told him because he has a daughter with CF and maybe I was counting on a sympathetic ear. He just asked how my wife was coping and didn't really bat an eyelid.

So on we go with the cards life has dealt us. I don't know what lies ahead and maybe I am still in denial. I hate people saying he is disabled and I struggle with news on various Down's children others have met and how they are all doing 'really well'. To be honest right now I don't want to know. He is my boy, he is perfect and no one is going to label him.

Maybe he'll be the first Down's person to go to Uni! I know, stupid but you can hope.

PS Do people with Down's drive?

Scott

admin · Posted: Thu Dec 13, 2007 3:26 pm Post subject: Driving?

I've heard of a few cases of folk with DS driving, but its pretty unusual. However quite a few people with DS have been to University, more so in the USA than the UK. My son loves driving his electric trike, dodgems, anything like that really, but he's too wobbly to use a bike and I'm not sure I'd trust him behind the wheel of my Vauxhall...that said I wouldn't trust my daughter either, and she IS at Uni, Rolling Eyes

However he does enjoy climbing, Wii, parties and football and all that kind of regular stuff.
Life with DS is definitely life at a different pace, there's less pressure to conform to stereotypes or conventional benchmarks, and that's maybe not such a bad thing. People with DS can be uber-cool!

From wikipedia http://en.wikipedia.org/wiki/Downs_syndrome

Notable individuals (this is a very short list, I can think of lots more)

Notable people with Down syndrome include:

* Bobby Brederlow (German actor)[56]
* Chris Burke, actor (Life Goes On) and autobiographer.[57]
* Pascal Duquenne, a Belgian actor who shared the prize for best lead actor with Daniel Auteuil in Festival de Cannes in 1996 for his performance in the movie The Eighth Day. King Albert II of Belgium made him Commander in the Order of the Crown in 2004.[58]
* Anne de Gaulle (1928–1948), daughter of Charles de Gaulle.[59]
* Stephane Ginnsz, actor (Duo) — first actor with Down syndrome in the lead part of a motion picture.[60]
* Max Lewis, actor (Notes on a Scandal).[61]
* Joey Moss, Edmonton Oilers locker room attendant.[62]
* Isabella Pujols, adopted daughter of St. Louis Cardinals first baseman Albert Pujols and inspiration for the Pujols Family Foundation.[63]
* Paula Sage Scottish film actress and Special Olympics athlete (netball)[64]. Her role in the 2003 film, Afterlife [65] brought her a BAFTA Scotland award for best first time performance and Best Actress in the Bratislava International Film Festival, 2004 [66]. Afterlife won the Audience Award at The Edinburgh Film Festival 2003. It also won Paula a role as Donna McCabe in BBC Scotland's River City soap. [67] .
* Judith Scott, artist.[68]
* Johnny Stallings, son of former University of Alabama head football coach Gene Stallings and subject of the book Another Season: A Coach's Story of Raising an Exceptional Son. (ISBN 0767902556).[69]
* Miguel Tomasin, singer with Argentinian avant-rock band Reynols.[70]
* Charles Waring Darwin son of Charles Darwin (retrospective speculation).[71]

The Down Syndrome Association of Los Angeles maintains a list of individuals with Down syndrome in roles in TV and movies.[72]

David · Joined: 05 Jul 2007 Posts: 4 Location: East Kilbride

Hi Scott,

Hopefully you got my email, I have just found my Fathers Forum username and password, so hopefully I can get up and running again....

Regards,

David