Sunday, October 28, 2007

"I always knew they were crazy!"

I think religious people have it easy. They can say (and believe) that God is leading them down a certain path, and that they have to follow, and that when they do follow God's chosen plan for them everything will be ok as long as they have Faith.

I on the other hand have to settle for being crazy.

Remember when I said that I've always felt I'm supposed to have a baby with Down Syndrome?

I still do. So, so much, it gives me goosebumps.

So Peter and I are seriously considering adopting a child with Down Syndrome in a few years' time.



This is a video montage from Gifts, a book written by families of children with Down syndrome. We have that book. Matilda likes looking at all the photographs and asking "What's his name? What's her name?" She asks to "look at the babies." It's all I can do now to tell her her little brother or sister will look like that one day, and say it with joy.

I have two healthy, bright children, and plan to have more.

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So why would I choose to have an imperfect child?
Well, if I was religious, I'd say it's not my choice. But I'm not religious, so I have to try and explain, and know that very few will understand. (I am so lucky that Peter does. I love him for that, among many-many other things.)

Because I need to help. Because I need to love and because I can love. And because I think I should help -everyone should. Because I AM a bit crazy. Because I believe the children will be better people for knowing, loving and growing up with siblings with a difference. But these reasons are partly rationalisations.

Because I have to be true to myself. Because of this:

This is Tristan:





This is Nolan:



This is Emma Jane, and this is Emma Sage. I don't know them, but I wish them all the best.



In Greece children with Down Syndrome still commonly live in instututions. (for the Greeks, read this link. Sorry there's not an english version.) The chances of a child with Down Syndrome being adopted by a Greek are loosely summarised as "when pigs fly." (I called Mitera Foster Home in Greece to ask about the process of adopting a child with special needs. They were very helpful, and told me that they have two little girls with down syndrome that they're trying to place at the moment, but they don't expect to succeed.) The ones that do get to go home with their families have minimal support from the state. In most areas and for most people, no early intervention, speech or physical therapy programmes are on offer, unless the parents can afford to hire a private trainer/therapist (and few can.) When children are mainstreamed to a "regular" school, rarely is the curriculum adjusted to meet their needs. Greek legislation states that mainstream schooling is the desirable option, but in reality, luck of funds, resources and understanding makes this a distant dream.

The Department of Special Education of the Ministry of Education reports that the programme of parallel support, meaning shared or inclusive education and co-teaching, is implemented only in exceptional circumstances when students with special needs study in schools withinclusion classes. It is estimated that the number of children with intellectual disabilities integrated into mainstream schools is less than 1,000, which is very few, given the country’s size and the population of students. It is reported that the number of inclusion classes in primary and secondary schools is not sufficient, and there is lack of financial support to staff these classes with trained teachers. In addition, school directors may be hesitant, at times, to integrate children with intellectual disabilities.Furthermore, many parents are reluctant to accept a second special teacher in the classroom, due to their ignorance, prejudice or fear of stigma for their children.

Many students with mild to moderate intellectual disabilities are placed in special schools, while most children with more severe intellectual disabilities have little access to education at all. Although materials and adapted curricula have been developed, the individual needs of students with intellectual disabilities are not met in the classroom.
(Taken from the 2005 monitoring report produced by the Open Society Institute (EUMAP and Mental Health Initiative) in cooperation with the Association for the Psychosocial Health of Children and Adolescents. Summary found here.)

Sometimes, there are bright exceptions.
(This is Ioakim. Go and have a look at his web page.)



But most are not that lucky. And it's such a crime to waste all this potential for love, laughter and learning.

And I quote:

More and more often these days, Matilda says things that blow my mind away. A lot of them are quotes lifted out of books we read, but she still uses them appropriately and in context. The other day Philip was jumping around in his bouncer, and Matilda said "Mummy, he's glad to be alive!"



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For the life of me, I can't figure out where she got that from, and I've been obsessively going through her books trying to find it. When your two year old comes out with a thing like that, it sure does freak you out.



Other things she comes up with are less deep and more hilarious. A particular favourite is a quote from Room on the Broom: "...he dropped it politely, and eagerly said..." Matilda will drop something (or throw it on the floor) and say "There! I dropped it politely!" Very often, that something is our poor, long-suffering Scrabble.



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Other times Scrabble becomes a "dingle dangle scarecrow, with a flippy floppy hat."



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So I was (telling her off) explaining that she has to be gentle, and cats don't like being flippy floppy, they just like being stroked, and she said "I see, mummy. I see."





Matilda loved having Marilena around. She called her Malena, and followed her around like a lovesick (and very very loud) puppy. I fear my crazy kids have permanently put Marilena off the idea of having a family. (And she didn't even visit when Philip was going through his shrieking phase!)



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Matilda is trying to enjoy a drink incognito:



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Matilda is turning into a little manipulator. When she realises I'm getting annoyed she swoops in with big kisses and "I love you mummy! I love you VERY MUCH!" (then goes back to doing whatever it was that annoyed me in the first place.)

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I suppose Philip will never become a vegetarian:



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Aha! Eureka!

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Wednesday, October 03, 2007

The "I can't think of a title" one

I had to blog to show you some new pictures, and apparently some text is also considered good manners.

So I'll tell you about my wraps!
Remember the one wrap I bought when I was expecting philip? They are so addictive... The lovely colours, the cuddly soft fabrics. I've got six now! Like I keep telling people who think I'm being excessive (who me?) I only own one pair of shoes.

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The cats have settled in amazingly well, and they sleep curled up together, play with each other and groom each other now. I'll try to get pictures soon.

I'm a little teapot, short and stout...

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Playing with Scrabble:

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Matilda is still enjoying playing her guessing game. Now we've incorporated phonics too, so I try to tell her what sound the word she's guessing at begins with. Sometimes we get funny results:

Me: Matilda, what animal starts with C?
Matilda: A Cow!
Me: Ok, you're right. And what other animal starts with C, and has very soft fur? (thinking of Cat.)
Matilda: Another Cow!

Me: Matilda, what animal lives in the jungle, and starts with T? (thinking Tiger)
Matilda: A Telephant!

Me: Matilda, what animal is very very fast, and starts with R? (thinking Rabbit.)
Matilda: A running dog!



Philip is coming on in leaps and bounds. He crawls around really well now, and has started pulling himself up. He also stopped making that horrible skreeching sound (yes! yes! yes!) and his new favorite sound is a sort of cross between cooing and blowing a raspberry. A lot easier to live with:



Do you think Matilda is cheeky? (listen out for what she's saying.)



I can't believe how much Philip has changed recently... He looks like such a little boy now.

Pulling up:

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Looking cheeky:

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Teaming up with Scrabble:

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Scrabble is still the biggest cuddlepuss, who thinks nothing of actually sitting on Philip for a cuddle. Here he is, enjoying a liedown on the boppy.

Breastfeeding can be so relaxing:

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PS: EMMA! (Josh's Mum) Thanks for contacting me! I can't get to your profile so I can't see your blog. can you make it public or send me a link please?