Treasure Baskets and Chicken Pox

Oh dear, our poor little boy has chicken pox. Emelia had it at the end of January, quite mildly really, so we expected Asa to get it the same time. However, two weeks later, here they are. Our health visitor warned us that Asa would likely have it worse than Emelia as he has been in direct contact with the virus… great. And she was right! The first spots appeared on the 6th February, and every day more bright red, sore looking spots have crept over his little body. Thankfully he isn’t trying to scratch the spots.

Aww my poor little boy…

20130207_105558
Asa asleep in my arms after a very grizzly, milk-refusing kind-of-morning!

20130207_151912Our little man had the pox much worse than Emelia. I’m glad he’s had it now as hopefully he won’t have it again. He’s too young to be trying to scratch the spots so we’re hoping there will be no scarring. Emelia hasn’t scarred either, phew!!

Again, I find myself unable to be in public spaces with the children. We are in quarantine in the house!!! Today is Sunday, and Asa and I are at home. We are sad to be missing church, but at the same time, it is rather nice to have Asa all to myself! …And it’s been so quiet!

This morning, after breakfast, and Jon and Emelia had left, I read Asa a story. It felt a bit strange not having Emelia clambering to join us! We also had chance to get out the ‘treasure basket’ as shown to us in the ‘Speak and Learn’ DS group. Treasure basket is a basket filled of natural materials. In ours, we have a bowl of uncooked pasta, wooden nail brush, a small pebble, baby brush, child’s wooden spoon, feathers (children’s artistic ones, not germ ridden bird feathers!) and a battery operated fan (I know this is not ‘natural’ but what we want is the air!)… The aim of the treasure basket is to introduce Asa to various textures. Some children with learning disabilities have sensory processing disorders whereby they don’t like certain textures. This can be items in contact with their skin such as certain clothing, food texture (something that I recently discovered affects me mildly), wind on faces etc. Not all babies with DS will have sensory issues. Some will, and this is where the treasure basket comes in to play.

What do we do with the treasure basket?

- Put Asa’s hands and feet in the bowl of pasta. This is his favourite treasure activity.
– Rub Asa’s hands, feet, legs, body with nail brush (funnily enough, he’s isn’t a fan! …But nor would I be!)
– Fan Asa’s body all over.
– Asa to experience weight, e.g. holding the pebble in contrast to the feather.
– Let Asa hold different items to feel them. The wooden spoon, even though is a child’s one, is still too big and he knocked himself in the head. No Asa, that wasn’t what was supposed to happen!

P1090864Asa deciding what to explore next!

So, while we have missed being with our church family this morning, we have had some lovely rare mummy and baby alone time. I love Emelia with all my heart, but it is great to be able to have a couple of hours to focus on the therapy and structured play activities that Asa needs to help his development.

P1090865P1090867

 

‘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!

***

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). :-)