Three Parties In Three Days!

We have had a very busy, party filled, past three days! Emelia and Asa have had two party invites. The first invite was to Emelia’s friend’s birthday on 20th December. Mia is now three years old, and she will be in the same school year as Emelia, hopefully in the same school! It was a great afternoon, filled with bouncy castles, party food, lots of happy sugar filled children and a beautiful rainbow cake made by Mia’s mummy, Keri! (Although, we’ve recently stopped Emelia’s naps in the day time as she was taking rather a long time to drift off… so when it was time to leave, it was a different story!). Asa got to hang out with his buddy Rog. I have a feeling they will be great friends as Asa grows up and understands how special his ‘Uncle Rog’ is. What is age between friends?

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Asa with his Uncle Rog! …Pass the parcel.

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On the bouncy castle…

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Asa looking adoringly at his buddy, Rog.

Thanks Mia (and parents), we all had a great time!

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Our second invite was to my Grandma and Grampy’s annual ‘Guy’ family get together. I love this family tradition. It has grown in the last eight years to include Jon, his parents, Emelia and now Asa, as well as my parents, two brothers (and one’s girlfriend) and my little niece Cerys. Sometimes my uncle and wife are there too – it’s a busy evening! It’s a good job that my grandparents had a large conservatory extension a number of years ago. My grandparents live in Llangybi, near Usk, so we don’t see them as much as we’d like to. This annual evening is an early Christmas, particularly for them.

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Emelia and her cousin, Cerys, enjoy spending time together.

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Asa and his Great Grandma.

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The men. Asa, with his dad, grandad, pops, great grandad and great grampy!

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Our third invite was to Doug and Joy’s children’s Christmas party, which was this afternoon. Emelia was invited last year, and this year, both our children were invited. I actually found it very moving, that these wonderful and generous people would open up their home to all the church children in primary school and younger…

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Asa and his buddies, Archie and Ethan, only 7 weeks apart in age. Our prayer is that these three boys will be great friends and encourage each other in school and church!

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Our friend Leon loves little Asa. Leon, you’re a legend – we know you’ll be keeping Asa entertained for years to come!

P1090694Can you guess who it is?

Each child and baby were bought a present. Emelia loved her doll from ‘Father Christmas’. Asa was the youngest there, and I had tears in my eyes when he sat on ‘Father Christmas’ lap, and we opened his present for him (toy links – perfect for his tiny hands!). To top it off, the children were also given a party bag filled with chocolate and smaller stocking filler toys. I can’t really explain why I found this part of the party so moving. I think it’s the fact that Asa is just seen as one of the children, ‘one of the gang’, totally and utterly unconditionally accepted by everyone in Bethesda. Loved. Cared for. Prayed for. This may possibly be the only public place he is accepted as just ‘one of the kids’, for who is he, where his Down’s syndrome isn’t that big a deal. I hope I’m wrong… But sometimes I hear stories of parents having to fight for inclusion of children with disabilities, whether physical or a learning disability, and that frightens me. Other strong, local parents are fighting and paving the way for those of us with younger children, and to them I am grateful.

Today however, Asa and Emelia have had fun hanging out with their friends from church. In fact, over the past three days, they have had nothing but fun (and sugar!!!!)! They have just been children. I think for children to just be children is probably the best gift of childhood. That, and knowing Jesus for themselves!

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Asa’s First Christmas Party

Today was Asa’s first Christmas party at Scallywags, the parent and toddler group in our church. It was a bit of a mad rush, as always, to get out of the house early enough to make it worthwhile going! Wolfing down breakfast, we got ready. I packed Asa’s bowl, spoon and banana, huge change bag and Emelia’s bag, put Asa in to the car seat and huffed up the steps.

We got to Scallywags and Emelia was happy to eat her party food with the other children, while I remained in the ‘baby corner’ to give Asa his breakfast. On days like this where I need to be out of the house early (well, early for me!), I’m so thankful I can chuck a banana in to the change bag and feed Asa out and about! I’m very relieved he likes bananas!

It was while I was feeding Asa that I stopped to look at the other precious little lives in the baby corner – Asa’s school buddies probably. Two sets of twin boys and another little baby girl. This is the first time Asa has been awake and around other little babies, so I have never intentionally or otherwise compared him to another baby. I noticed these babies seemed much more physically developed than Asa, in terms of their gross motor skills. Yes, they are a few weeks older than Asa, and yes I know that all babies develop at different rates. Even amongst ‘typically developing’ babies there are massive variations. But in my heart I felt sad. I felt we were the ‘different’ ones in a room full of ‘normal’.

As tears started to sting my eyes, I had to look away. I kept trying to tell myself that it didn’t matter; that all babies are different and I tried to focus simply on feeding Asa his mashed banana. I felt my eyes wander every now and then and saw these little ones attempting to roll over, waving their chubby arms and legs, holding toys, babbling away in secret baby code. Then I looked at my beautiful baby boy who didn’t seem as strong… who isn’t anywhere near rolling over… who can’t yet hold a toy… who doesn’t have (yet) the usual baby babble… And my heart ached. Please don’t misunderstand; I am in no way jealous of these other mums. In fact, I probably couldn’t cope with twins, so hats off to them! I am blessed with two beautiful and healthy children. This is my frustration – I can’t really explain it in words. I just felt a bit heart-sad I suppose.

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Banana totally demolished by little Asa (followed by banana scented sick – eww; I hate reflux), we headed off to see ‘Father Christmas’ in the main hall. I put on Asa’s softband hearing aid, feeling rather conspicuous. We sang a few songs and then all the children went to get a small parcel from Father Christmas. Wonderful! Emelia was rather excited, running around with her usual boundless energy; Asa snuggled up on my lap, watching the comings-and-goings. I was talking to one of the kitchen volunteers and noticed someone across the hall pointing over in our direction and talking to her friend. I looked behind me and as I was against a wall, obviously there was no-one else there behind me… I was already feeling vulnerable and disheartened, so maybe this was more in my head than in reality, but I strongly felt this person was pointing at us – I couldn’t see who else it might have been. It could have been something as innocent as ‘cute baby’… or ‘I wonder what that baby has on his forehead’. Or it could have been something else. But you know what I’d prefer? I’d love people to come up and ask me if they have a question about Asa or Down’s syndrome. I’d happily answer questions about the softband, or hearing loss (not that I’m an expert!) or how I am doing or how Asa’s doing. I’d love not to be pointed at or talked about… I guess I understand though, to some extent…

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Today has been ‘one of those days’ I suppose, where my heart has been tugged as I realise again that yes, Asa is different. Right from when that extra copy of chromosome 21 was made, he was marked to be different. This is the way God has designed him, right from when sperm met egg. We are all different because of the impact of Asa in our life. We are blessed. We are busy. We are happy. We are stressed at times. But we are family. This is our life. It is a little bit different. But being different isn’t bad. It’s something to be celebrated – and I’ll get back to more positive blogging soon. This blog was never designed to be a ‘rose tinted’ version of DS, and for those of you who know me will know that I am usually a pretty honest person when it comes to sharing my life – the ups and the downs.

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Asa 22 weeks _Christmas Jumper
Asa’s new winter jumper! :-)

Just Like You

I came across this video recently, ‘JUST LIKE YOU’. I have watched it many times, possibly ten times. I am sure I will watch it several times more! I have shared it on Facebook, Twitter, e-mail and now on the blog. I LOVE this film. I really do! It’s a simple production featuring three teenagers and their friends. Three of these great teens have Down’s syndrome. I love it because these teens are just like their friends, and this is one of the first times I have seen three individuals with DS communicating so well, sharing their school goals, sporting achievements and social lives.

Please watch this film and share with your friends. Together we can raise awareness of what DS is and what it means, because as one of the teens says, “Understanding makes it easier to accept.”

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Some of my favourite quotes from the film:

“Anything new is a little scary at first…”

“No-one is exactly the same. We all have our talents… Characteristics… Strengths and Challenges.”

“Understanding makes it easier to accept.”

“I have Down’s syndrome… I am not called Down’s syndrome. Down’s Syndrome is not all that I am.”

“Please don’t call her a Down’s syndrome kid or a Down’s kid.”

“Down’s syndrome is just something I am born with… It is just one part of who I am.”

“Just treat me like any other kid.”

“Invite me to your birthday parties.”

“Don’t baby… Most of the time I can do it.”

“Slow down… Please wait for me to finish talking.”

“Just give me time to do stuff, I am worth the wait.”

“We’re all different, in our own ways.”

Dear M&S

This is the message I wrote on Marks and Spencer’s Facebook page after Seb White, a handsome little 4 year old, was included in the company’s Christmas advertising. Oh, and this little boy just happens to have Down’s Syndrome. He isn’t singled out, or given any special treatment. He is just ‘one of the gang’ – true inclusion at it’s greatest!

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Dear M&S,

I just wanted to say a big thank you from my family, especially my handsome 11 week old son, Asa. For anything in particular? The lovely clothes people have bought for Asa? Yes. The beautiful gifts people have bought us from your company?  Yes. For gift vouchers so my husband & I can go and choose gorgeous outfits for our two precious kids? Yes!

But more recently – Friday in fact – we learned that history was made. We learned that M&S are to feature Seb White as a child model in the Christmas magazine. Today we read a great article about him in The Times and The Daily Mail. You see, our adorable Asa also has Down’s Syndrome, like Seb. It’s taken us a while to come to terms with this and if we are honest we have had many tears (well, more so me!). So to see a huge company like M&S proudly feature Seb, a beautiful boy with a cheeky smile and adorable sparkly eyes and who also has DS…well it melts my heart. It makes me feel that we are not on our own, that the tide is turning, that our children will be seen as individuals first and not just their condition, which is just a small part of who they are.

I am so proud of M&S – this makes me proud to be British – and I hope that other companies will follow your high example and include people with disabilities in adverts, particularly in fashion and lifestyle! So well done M&S and thank you from the 4 Shaws from Dinas Powys! …especially from Asa who will grow up to be whatever he wants to be!

Lizz x