Matthew and I went to the 'Progress Centre' picnic today http://www.progresscentre.com/. It was a gorgeous, sunny day, and a really lovely do - it was for children who have developmental delays and their families, and there were quite a few kids there who had Down Syndrome. Really cute kids on the whole, although the teenagers were very teenagery (i.e. not cute at all). Noah hid under a picnic table for most of the time due to a very scary Dora the Explorer and an even scarier clown. Alfie was very popular with some little girls who kept peeking into his stroller.
I think there will probably be some suitable girlfriends around here for Alfie when he is older - I will resist the temptation to arrange a marriage now and will generously leave him to make his own decision when he's of age, but I'm heartened to see a such good prospects.
When there are a lot Canadian people all together, I suddenly get feedback on my English accent - it's like being on an old fashioned long distance phone call where you can hear your own voice echoing around your head after every sentence. Luckily people here are SO friendly here. Matthew and I have been comparing our 'that would never happen in England' notes every night.
Halifax is different from London because:
Everybody smiles at you when you walk down the street with children (apart from the man who's renting out his house up the road - Mat went round to view it and he made him pretend to sit on a non-existent sofa and refused to let him walk through one of the doors with the spooky phrase 'no, we don't use that door' - so he's not that typical).
When you realise you are cycling on the wrong side of the road, cars on the other side of the street stop to let you do a U-turn.
When you buy a bike you can test drive it out of the shop without leaving anything behind by way of security, and they even lend you a helmet.
Conversations in shops can last for about 20 minutes and people don't think you are mentally ill if you talk to them.
It's incredibly easy to make friends (I've had four play dates for Noah in only two weeks), however, Mat needs a drinking partner, which isn't that easy to find without seeming desparate.
Alcohol is only sold in government run shops and is one of the few things that doesn't seem half price when you translate the cost from dollars to sterling. And you can't buy it on Sundays.
The weather is better - it's still like mid-summer and it's late September.
There is so much produce in the supermarkets - it takes about half an hour just to walk down the jam aisle! All the vegetables are sprayed with water to keep them looking really succulent, and, I have to repeat it - there is SO MUCH!!!
Saturday, September 30, 2006
Friday, September 15, 2006
Alfie has Down Syndrome
We have just got back from Down Syndrome 101, a really good lecture by Lyn (someone) from the Canadian Down Syndrome Society. It's made me think back over the last three months - seems like a lifetime since Alfie was born - and one of the things that stands out is how lucky we have been with our friends and family. They've said all the right things, been so supportive, and more.
It's called Down Syndrome here in Canada, rather than Down's - the reason being that John Langdon Down didn't actually have the syndrome himself, he only identified it - so it's not his syndrome. I guess in England we think that everything is really owned by posh white men, whether or not they had it themselves, so it makes more sense to use the possessive ''s'.
During the lecture we were asked 'what do you think is the most commonly held belief about why a woman would have a baby with Down Syndrome?' - it turned out that people thought they had done something wrong, been near radiation or something. Mat and I both thought the answer was going to be 'because we were the right parents, we were lucky to find each other, and it was meant to be'. That must just be a reflection of how happy we are with our lovely Alfie.
I think I've always thought I might have a child who had Down Syndrome. I didn't have the nuchal fold test with either Alfie or Noah because Mat and I both knew our children were wanted no matter what their level of ability, health, or looks. When he was born I had two real concerns - one, for his health, the other was about people's reactions. I really didn't want people to feel sorry for us or think that the birth of our lovely baby was a sad thing. Luckily, everyone was really positive and supportive. We received so many congratulations and the only comments that annoyed me were from people we didn't know.
At first it really grated when people said 'they are such happy people' or 'your child will be really friendly and cuddly'. There is something very annoying about people telling you what your child's personality will be when they're only a few weeks old - and also, they are wrong! When our health visitor said something to this effect I asked her how an extra chromosone could possibly mean you wouldn't be grumpy when you were older. The answer is that Alfie cries and smiles and grizzles and burps just like anyone else, and he will continue to have good days and bad like everyone else.
Mat and I just feel so lucky with both Alfie and Noah, they are such lovely boys.
Now I don't mind so much if people say 'they're lovable people'. They are really just reaching out - what they are really saying is 'I think your child is nice and it's not a bad thing that he has this disability'.
The other thing I found hard was all the information we were given about schools and job prospects in the future. Matthew pointed out that if we'd been given the same information when Noah was born, telling us what his future and adult life were likely to hold, we would have freaked out the same. When you have a newborn baby you are really only interested in breastfeeding and the next 5 months. You shouldn't have to consider anything of the future - and you really don't know what any of your children will become.
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Here is the notice I made for visitors and never gave to anyone!...
Our newborn baby has got Down’s Syndrome. We are just getting to used to having a new member of our family, and one who has different needs and abilities. We aren’t getting very much sleep, and are likely to be a little sensitive. We would be very grateful if you would bear in mind the following:
Notes for Visitors
DON'T...
Stay for ages - unless you are going to help cook, clean, or babysit!
Tell us what personality our child will have when he/she is older (we are looking forward to discovering this ourselves).
Refer to people who have Down’s Syndrome as ‘they’ - as in...”they are very floppy” or “they are very loveable”. Perhaps try “if you have Down’s Syndrome you are likely to be more floppy” instead.
Forget that all children are different and unique, no matter what their genetic makeup.
Visit if you are ill or have been close to someone who has a contagious illness during the past week.
Visit if you think this is the worst thing that could ever have happened. We are very positive about our wonderful baby and think that we are blessed. We don’t want anyone else spoiling our fun.
Imply that it might have been better to have had a test and terminated the pregnancy of our lovely baby.
Tell us that you don’t like the name we have chosen.
DO...
Talk more about how cute, gorgeous and perfect our baby is, than discussing Down’s Syndrome and it’s effects.
Let us continue to believe that our baby is the best baby ever born, and obviously a genius.
Offer to make tea and/or coffee.
Bring presents!
Make sure you know something about Down’s Syndrome before you visit. There is loads of up-to-date information online. Things have changed a great deal during the past 20 years.
Focus on possibilities and abilities rather than difficulties and disabilities.
Tell us how well we are doing.
Say ‘Congratulations’!
Sunday, September 10, 2006
Setting up
I'm typing with one hand and holding Alfie with the other - typical mum stance.
Mat is taking the rubbish out (is it trash? garbage?). He has made it clear this is not his role but as he's the only one who's read the recycle guide he's stuck with it this week. We've just moved to halifax, n.s. and the recycling is excellent - but a bit scary - there's talk of fines for the wrong thing. All the compost is put out separately. Frances down the road has just told us that if they see a banana skin in your garbage they won't empty it (is she joking? it's hard to tell).
Find of the day is the Halifax Stitch and Bitch
If I can express enough milk I'm going to try and join up. My knittings a bit elemental at the moment but I miss our London S&B already.
Nice piece here on Mat's last DJ set in London
There are some pensioners circling our recycling now - I think you can get 10c a bottle if you take it to the recycle centre. Mat's gone out to have a chat.
Everyone is so friendly, I made some new friends in the park earlier, they have a son Noah's age (2) and we're going to meet up next week. It's such a shock after being in London for so long. My sister pointed out that if you chat too long to people back home they think you have mental health problems or are trying to steal from them. Even the doctors receptionists are nice here.
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