fathers.myfreeforum.org

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

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 · Posted: Tue Jan 08, 2008 8:35 pm Post subject: 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 · Joined: 05 Jul 2007 Posts: 4 Location: East Kilbride

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 · Posted: Thu Jan 10, 2008 1:28 am Post subject: 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 · Joined: 26 Oct 2007 Posts: 11 Location: Edinburgh

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

Guess what,

Our wee boy likes curry!

Scott

Rob · Joined: 26 Jan 2007 Posts: 15

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

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