New dad

Scott · New dad

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 · Re: New dad

hi Scott, and congratulations on finding the forum.

Ross · Where do I go from here? a few ideas...

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

Scott · 1 step forward

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 · 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

catthomson

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 · New Dad

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.

Scott

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 · 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

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

Scott

Again it's been a while since I updated the forum. Life goes on a pace doesn't it!

Louie seems to be doing well, touch wood. He is smiling now and responding to voices. Just like any other baby. Every now and again you see the DS in him and that hots you like a bolt.

You pretend all is ok and then you are brought down to earth. Having said that when I am work I hardly see him.

He gets lots of kisses from his family and has no chance to be treated differently.

A doctor I took him to said make sure he is not treated any differently. I said with two toddlers in the house there is not much chance of that!

I don't want him to grow up. He's fine as he is and as the years go on the DS will rear it's head and mark him out. Right now he is a beautiful baby with slightly different eyes. Big and beautiful.

We had the local surgery contact us to arrange a visit to check him out and get him "in the system". I don't want him in any system. I don't want busy bodies interfering and I don't want him labeled. We will look after him.

Life goes on. Am I the only one here?

Scott

admin · DS looks and benefits etc..

Hi Scott, and happy Hogmany,
Glad to hear things are going well.
The "system" isnt so bad in restrospect - just the child health surveiilance system but with some extra checks for some of the more common issues like
hearing problems. Most kids with DS need glasses too from an early age - it's important to get them early to help the kids learn to read and observe whats happening.

The other thing that is really useful is that you can claim DLA which is worth up to £300 a month..all kids with DS get it in the UK but the rate varies - get some advice filling out the forms, it pays off.

I'm not so sure about DS and "that look"...I think there are probably lots of folk with DS you walk past in the street and just dont notice because they aren't typical "stereotypes". Theres lots of good photos here -

http://www.shiftingperspectives.co.uk/public.html

I think our kids and young people come in virtually all shapes and sizes. What do you think?

David

Hi Scott,

Just read your email. Reading between the lines I can see its very hard coming to terms with Louie and DS.

I had the same feelling when Jenna was born and to be honest DS thoughts never leave you and I know what you mean when you say every now and then you see the DS.

I could just cry inside sometimes when I see it and it makes me so sad, but to be honest Scott my life has changed so much and I know my life and Jenna's life will never be ordinary but I wouldn't change it.

But I try not to think to the future but enjoy Jenna and I give her longer kisses and cuddles and let her get away with a wee bit more, but I suppose in my head I'm saying ''She's so special'' and you will be the same with Louie.

Things will get better and I know when people say it you say yeah yeah, but I was the same as you and still am, but I suppose I have learned to accept it and I suppose thats what its comes down to.

I might be talking crap Scott but for what its worth. This is my first child and I wanted the perfect child and I was so numb when it all happened I never knew what to say or do when I meet people. Even now Im still in denial because when people meet Jenna, some people say nothing about her looking DS and you wonder do they know, and when some people comment about being DS to you. You say to yourself ''how the hell could they tell'' of course they know but because I love her so much in my head she is just normal I think..!!

Anyway enough of my ramblings, I must go so please feel free to vent you frustations and you never know I might actually give some good advice one day..!!

Regards,

David.

admin · True, very true

Yes, of course you are right there. There is a lot of pain especially at the start and sure the old self-pity sometimes still hits me when I see how far behind the other kids my son is in so many different ways - though they are generally incredibly kind and supportive of him in his mainstream school - he certainly doesnt get picked out for any special bullying or teasing - but then he doesnt get many invitations to their houses and is usually excluded from the rough games and banter. But of course there are compensations, and having other children I feel some pain for them all in different ways...fatherhood is not a bed of endless roses, is it?

Scott

Louie seems to be doing well.

My wife and I have started a blog. It probably just cathartic but possibly if others read it they may get strength from it.

I wish I could tell other dad's struggling with a Down's baby that it is ok to feel the way they do. It hurts, bad. But love the baby you have, not the one you planned for. What are you going to do, send it back?

Scott

Scott · Food

Guess what,

Our wee boy likes curry!

Scott

Rob · Favourite food

My boy HATES curry, to my eternal regret. Spicy food is a no-no. However, he loves fish - mussels, scallops, cod, haddock, smoked salmon, kippers, oysters (even raw) octopus, langoustines, crab, lobster, squid, you name it. Especially with the heads on. Only thing is.... don't read on if you have a sensitive disposition....

scroll down....

He likes eating the fish eyes too !!!!!!! Mr. Green

Scott · food

you're not rick stein in disguise are you..?

New dad

Re: New dad

Where do I go from here? a few ideas...

1 step forward

News article

New Dad

Driving?

DS looks and benefits etc..

True, very true

Food

Favourite food

food