Bakery

Take a few minutes to watch Yasmin Fedda's award winning documentary Breadmakers. It focuses on Edinburgh's Garvald Bakery, a social enterprise staffed by 12 people with intellectual disabilities:



And here's a better quality version.

Show some respect

Here is an extremely moving and eloquent speech by a young woman
who I've posted about before - Eleanor Bailey. She wrote this speech
and delivered it at the launch of a photographic exhibition related
to Down syndrome at Oregan Health Sciences University.
I wish I could have been there. Thanks Eleanor, for letting me share
your words.


"My name is Eleanor Bailey. I am very happy to be here today.
People with disabilities like to be treated just like anyone else.
All people should be treated nicely.
Sometimes people with disabilities are not treated very nicely.

Sometimes people just hover over us and say "just sit over there.
You can't be part of the group." They think they're too good for us.
They don't have time to sit down and talk to us.
They don't have time to help us.

I call people like that air heads.

Don't be an air head.

When you talk to me make eye contact.
Pay attention to what I say.
Listen to my words. Show some respect.

If I say I'm sick I am sick. Listen to me.
If I say my tooth hurts, listen to me.
When I speak I demand to be heard. I'm nice to you.
Be nice to me.

I am more than a person with a disability. I am a human being.
And I have feelings just like everyone else.
Speak to my just like you would like to be spoken to.

That's all there is to it.

Free Our People!"

John McGinley

A good friend of mine found this article in a magazine he was reading while spending Christmas in Cape Town. It's by actor John McGinley, who is in the comedy series Scrubs. He has a son who has Down syndrome and this is a sweet and succinct story about life not turning out quite how one expects. You can read the whole article in Best Life Magazine.

Milestones

I had a chat with a friend of mine, via Facebook, about milestones and development, which she said I could share with you. I thought it might be interesting to other new parent's out there - I guess this is something that everyone goes through.

(In the meantime, Alfie has learned to play the piano and we are considering entering him for classical music competitions)




Hello! Long time no see! Happy New Year as well!
I have a question for you about milestones Alfie hit. I'm getting depressed, I know I shouldn't be, about where Eric is in terms of development. I'm on message boards for parents with children with DS and all of there little ones the same age as Eric or younger are all sitting unsupported and getting up on their hands and knees. These kids have DS!! I was okay with him being behind "typical" kids, but now it seems like he's behind his peers as well.
Eric is not sitting (no where near) and starting to get on his knees but not the hands at the same time. I am so depressed. I went to Ian's babybook to see when he sat unsupported as I knew he was late doing this too and he was 7 1/2 months when he did. That's how old Eric is right now and he is not showing any progress at ALL in this area. Blah.
Okay, sorry for the rant but no one else understands. My sister-in-law who has been the best about all of this says not to compare and so not be sad but it is impossible! I knew he was delayed but he seems to be getting more behind everyday. Blah.
Ok, I have to stop or I get you down!!
Hope things are well!
Felecia


Oh I know how you feel!
But the only way I've found to manage this is to completely ignore milestones. I think Alfie was about 9 months when he first started to sit - it was when he was in hospital so he was between 8 and 10 months - but I really don't keep track of things like that. One reason is that Alfie had very low tone and a very big head and very poor muscle tone in his tummy. The other reason is that it makes me feel wretched.
Eric might also have lower tone than you thought - especially in his stomach. This is no indication of his overall intelligence, or how able he'll be able to manage when he's older. In fact, some of the adults I've met have been very strong physically but not so able verbally, so being able to sit really isn't a good indication of anything.
I have days when I'm so frustrated that Alfie isn't doing anything - responding like I think he should, that he's still chucking his plate on the floor, etc etc, and then a couple of days later he'll completely surprise me by crawling right up the stairs!
It might be that Eric is having a little plateau while he thinks about things and develops another area that isn't sitting. Just keep going and know that he will get there in his own sweet time. And he will get there. And you will be SO PROUD!
Also, I'm concentrating on getting Alfie to do things right, not quickly. He does learn if he is shown something enough times, and I'm so proud that he's crawling - even if it's about 6, 7, 8, months late - because it means that he's strengthening his arms and that will help him in the future.
Keep going with the physio, concentrate on getting Eric to do things right, in his own sweet time, and feel proud of your little boy for just being the cutest little boy in the world.
I feel sorry for all those parents whose baby's are walking by 12 months (like Noah was) - it feels too fast!- enjoy the lovely slow pace that our little ones take and give him a lovely big hug from me.
Alice x x x

Oh Alice, when I woke up this morning and read what you wrote to me I almost cried as you cheered me right up! Some days I have good days, others not so great. I was getting so frustrated. You are so right about teaching him how to do things right, not just fast.
On a happy note - Eric must of sensed I was frustrated and when I calmed down this morning after reading your letter, I went to work on Physio with him. He sat!!! For like two minutes unsupported!! Without falling! He's still pretty hunched over and supporting himself with his arms, but he's finally getting it!!! I am so happy - I posted some pictures. I am so proud of him I cried. By 9 months he should be fully able to sit unsupported the correct way if he keeps this up!! Yeah!
Felecia :)

Phoneme Touch and Say

Right, it's been so long since I've written anything here, I'm a bit embarrassed. In my defense, I've been working quite a lot, and I made a new years resolution to spend more time with my children and less on the computer. Which I'm being quite good about sticking to. Anyway, Felecia pointed out to me that two months with no posts is quite poor really - so here's one for you.

Alfie learned a new sign this week. 'My turn' - or 'me'. He's so pleased with himself for learning it that it's meaning has changed to 'Wow look mummy I can do a sign, look! look! look! meeeee!!!!'. He's just so delighted with himself. He realised how useful it was the other night when he was trying to reach the chocolates - suddenly he had a brainwave and tried the 'my turn' sign - and it worked. Now he's using it all the time. I'll have to try and get a video of it because he's really cute.

Also, we have just started working with speech pathologist Jill Hicks. Mat and I are really excited about this. She uses a sign system to help show children, visually, how sounds are made, and how they are different from each other (well, there's more to it than that - but that's my quick summary). It's called Phoneme Touch and Say - and has emerged from her professional practice and her experience of having a daughter who has Down syndrome herself.

To start with we are working on four sounds. Da, Ma, Oh, Eee. For Daddy, Mummy, NOah and AlfiE. I'm making a picture book with photo's of each of us, and I'm going to hold it up and say the sound very clearly, and then show him the sign for the sound while I say it. The plan is to do it lots of times so he can clearly see that there are different sounds in these words. Obviously, we'll have to do it many times. I'll post up here how it's going.

Also, Jill pointed out something really useful. She made a quick video of me chatting with Alfie and noticed that I ask him chatty questions quite a lot - for example 'would you like some more?' 'how about we put it this way up?' 'would you like the cow?'. Instead of doing this, I'm going to try and say shorter, or one word, sentences - 'more' 'this way' 'cow'. The aim of this is to build up Alfie's vocabulary - give him the meanings of lots of words very clearly rather than lots of extra information that doesn't really matter to him. I'm really pleased with this - it makes perfect sense and I wouldn't have thought to do it myself.

I really think that clear speech is the key to giving Alfie confidence and independence as he grows up. So we are starting now.