‘Speak And Learn’

Today was Asa’s first ‘speak and learn’ group. This is a ten week block group therapy for children with Down’s Syndrome and their parents. The aims of the group include helping to develop communication and to encourage the use of Makaton signing.

If I am honest, I was really nervous about it last night. ‘Sicky stomach syndrome’ reared its head. Irrational anxiety. Head and heart in opposition. I didn’t want to go. I didn’t want to go to a group that was just for babies with DS. I didn’t want to be in a room full of others like Asa, acknowledging that he was there because he was different and in need of extra help and support. I didn’t want to have to make polite conversation with other mums and dads because the only thing we had in common was that our kids had DS…

Notice that all these things above are talked about in the past tense… Because in reality, my prejudices and anxieties were squashed after about a minute! In reality, this couldn’t have been farther from the truth. In fact, I LOVED it!

There were only two other babies, J, a boy aged 7 months and L, a girl aged 9 months. Asa is 6 months old now, and so he is the youngest – and smallest! The mums and dads were also lovely, very supportive and kind. There should be more in attendance next time as some couldn’t make it. The leaders of the group were lovely. It was a very positive experience. We sang, learned play techniques, basic age-appropriate Makaton signs, sound cards, talked about a few different things like drinking cups, weaning, and we were shown some facial exercises to do with the babies. One mum previously in the group called it ‘face gym’ – I quite like that. Doing these exercises daily should help our children’s facial muscles get stronger, which will help with speech, eating etc. Talking to other mums, it is clear that DS isn’t the only thing we have in common. We’re all mums, we’re all tired and all want the best for our children! :-)

As well as the ‘face gym’ exercises, we were given the sound cards to do at home. They seem a bit bizarre, for example, the ‘sound’ for the cow isn’t ‘moo’, it’s ‘mmm’… The ‘sound’ for baby is ‘g(uh), g(uh)’… It’s a tried and tested speech therapy technique so I’m not arguing – but it does make me feel a bit of a melon doing these cards!!!

All in all, it was great. Asa, despite usually needing a nap at this time of day, seemed to enjoy it. Hopefully he, J and L will be buddies as they grow up. I can’t wait for next week’s session!

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Tonight, Lucy, a dear friend, asked me how I was and how all the appointments were going for Asa. I love this friend. Every time she asks about me, Jon or the children, I know with certainty that she is genuine and I can be totally honest with her. What followed was a conversation about DS. I love that Lucy is genuinely interested in Asa’s development. She asked sensitive questions about his appointments, about future schooling, etc. I am far from an expert on DS, but I do appreciate being asked questions about it, even if I don’t always know the answer. I’m not a fragile doll that will break if you mention the phrase ‘Down’s syndrome’. I’d much rather people ask me about it than point and whisper about it, or think I’m too emotional to answer. Because it really is ok!!! If I can help raise awareness in an open and honest way, while not looking at things through ‘rose tinted’ glasses, then that makes me happy. I would much prefer you to ask me a question instead of a saying a generic, outdated statement such as, “They’re all so happy and loving” or “they’re all musical” (which Asa’s consultant told us when she gave the diagnosis, grr) – you probably won’t get much out of me if you come at me with these stereotypical sweeping statements…

So to all of you who have asked genuine questions, no matter how ‘silly’ you think they are, thanks!

I’m on twitter: @lizzshaw01 and on Facebook so if you have a question, ask me! Even, better, see me in person! I won’t bite (well, probably not). :-)

Beaches and Sunsets Are Made For Each Other

Today, we spent the afternoon at Southerndown, perhaps one of our favourite places – the cliffs and the beach, the scenery and the rural walks – beautiful. We took a picnic but as it was rather cold to sit outside, the four of us had our lunch in the car at the top of the cliff. We decided after lunch that we would move the car to the bottom car park so it would be less walking for Emelia and pushing the pram. However, the car refused to start. Yikes! Some kind people gave Jon a hand and eventually it got going again. Afraid it wouldn’t start again, we agreed that one of us would stay in the car with Asa, and keep it running. Jon and I took it in turns to walk with Emelia on the beach. The sun was setting as we were walking. Beaches and sunsets are made for each other, a bit like jelly and ice cream, flowers and vases, icing and cake – like Jon and I, and our lovely children. We are made for each other. How I love our little family!

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Today has been a lovely day, spent marvelling at creation, eating, laughing and making memories. It’s a bit like the calm before the storm, as we know January is going to be very busy. Already we have 10 appointments for Asa lined up and one for me! Over the next few weeks, Asa will see the ENT (ear, nose and throat) specialist about his stridor (noisy breathing), physio, the community paediatrician and blood tests, feeding clinic, portage (child development / psychology service), audiology MAP (Multi Agency Planning), and in two weeks time, we will start at the ‘Speak and Learn’ communication group for children with Down’s syndrome. Most of these appointments require child care for Emelia, so thank you to friends and family who have already offered.

So, as we embark on a new year, we are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We’re counting our blessings (namely two that go by the names of Emelia and Asa), and praising God for his goodness and faithfulness to us now, and in the future. To our friends and family, happy New Year! xx

Happy New Year – 2013

Today we went to Southerndown for a picnic. As it was too cold and windy to eat outside, we ate in the car. It was a bit awkward, especially feeding Asa, but it was an adventure! After our picnic, we thought we would move the car nearer to the beach, but it wouldn’t start. Some kind people helped up push it and Jon got it going again. Afraid that it wouldn’t start again, we decided to keep the car running and one of us stay in the car with Asa (it was freezing!) while the other took Emelia on the beach. Jon went out first and then we swapped. The sun was setting as we were walking on the beach. Sunsets and beaches are made for each other, like jelly and ice cream, hands and gloves, salt and vinegar – like Jon and I, and our two children. We just all go together.

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Today has been a lovely day, just the four of us spending quality time together, eating and laughing together and making memories… A great way to start the year! The rest of January will be busy – Asa has ten appointments, some of which are the new ‘Speak and Learn’ communication / speech therapy group for children with Down’s syndrome starting in a couple of weeks. Other appointments include ENT (Ear, Nose and Throat specialist) for Asa’s stridor, audiology review (MAP – multi-agency planning), Portage (psychology / child development service), Community Paediatrician, and physiotherapy to name a few!

We are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We are counting our blessings and praising God for his goodness and faithfulness this far, and which we know will continue always.

Happy New Year, friends!