I started blogging in order to share updates about Claire’s progress. I think I’ve gone off track a little, but for where this has taken me, I am thankful. During the last two months, I have been able to reflect somewhat publicly on what has been a complicated time in my life. It has been really therapeutic for me. If no one was reading, I still think that writing this down would have helped me a lot. I recommend this process to others too.
Turns out though, that people are reading my blog. In fact, it has had over 4000 views in the past two months. I am pretty amazed really! I figure some of these views are by repeat visitors, so perhaps 1000 people have visited? Even so, that is 1000 people who have heard part of our story, and who now know a little about Cri du Chat Syndrome. Also, if you keep coming back, I must be doing something right!!
So I plan to continue to share our story. I plan to celebrate my daughter and her achievements. I plan to let others in a little as to what life is like living with genetic difference. I hope to break down some of the fears I know that exist in relation to disability and dispel some of the misconceptions. I think the fears exist mostly because of the ‘unknown’. I know that fear can exist, because I used to be very afraid…now I’m a little bit braver 😉
As for The Bear, well, I have to share her achievements of late because she is doing really, really well. I am so proud of what she can do, and thought that all my Christmases had come at once, when yesterday she sat unaided for about 30 seconds, lifted her hands up and began to clap, without falling over. We tried to catch it again on film. See the clip here on YouTube. Too cute! I’m a very proud mummy.
Over the last few months Claire has made amazing progress with her body. We have been attending hydrotherapy with Toni Fuller from Aqua-Moves. Toni uses principles of the Feldenkrais Method, a person-centred method which focusses on awareness of movement. I think that the hydrotherapy has made a significant difference in Claire’s ability to make her own body move in the way she wants it to. Claire’s sitting has improved immensely. After her first lesson with Toni she began rolling over multiple times. After two months, she will lay on her back and kick and arch, and she now is trying to lift her legs under her body. All good signs that one day she should be able to crawl and walk.
While I don’t believe that it has solely been the hydrotherapy that has seen such massive improvements in Claire lately (sorry, Toni!), I do think that it has certainly awakened something in her and given her a real awareness of her body. I also love that it is a therapy which Claire enjoys. She tolerates all of her therapies, but during hydro, in the warm pool, she smiles and giggles and makes all sorts of signing gestures and sounds. She often vocalises more in those sessions than she sometimes does in a whole day.
We have an amazing physiotherapist, Luke Newland (Physio4Kids), who has been working with Claire in our home since she was just 7 weeks old. Luke has shared a wealth of knowledge with us this year and has really helped us out in navigating our way through this new experience. Claire might not enjoy physio quite as much as she does hydro (sorry, Luke!), but she tolerates it and has made wonderful improvements from these sessions too. We really look forward to appointments with Luke, who is always so positive about Claire’s achievements and notices the tiniest differences, that sometimes we even miss. We really value Luke’s opinion and suggestions, and I know that his dedication to a high standard of care has been a very positive influence on Claire’s development. I credit Claire’s improved sitting to his work also.
While I’m praising Claire’s sitting and movement abilities, I have to give Conductive Education Queensland a plug again. When we first started, what I liked most about CEQ was the classroom setting and educative model with which I was familiar and comfortable. Therapy was really a foreign concept to me this time last year, but in the conductive education classroom I felt a little more at home. I have noticed over the past few weeks, as Claire’s sitting has really improved, that when she begins to get wobbly, if I sing the conductive education tunes (or other sitting songs), she really seems to stop, think and correct her position, therefore sitting a little longer before crashing to the ground. Note: there is still a LOT of crashing! The songs and repetition are core principles of conductive education and are obviously something to which Claire is responding well.
It would also be remiss not to thank my gorgeous hubby Matt and our neighbour Stan for creating Claire’s custom built corner seat, allowing more comfortable sitting pra
ctice for Claire and helping her to sustain a sitting position for much longer. Thanks Cheryl and Mckenzie for loaning us your corner seat until ours was made!
So, in summary, you should know three things:
- The Bear is AMAZING, and is getting closer and closer to independent sitting each day.
- We really value the wonderful therapists and educators who work tirelessly with our little girl.
- I’d like you to continue sharing our story, raising the awareness of Cri du Chat Syndrome, Claire and our fundraising event.
Oh yeah, I said presents… Callum bought me the bird cage necklace that he had wanted to get for me for my birthday in June. Matt had worked really hard to talk him out of it, and steered him to something he considered might be a little more ‘me’. As Callum was still going on about it last week, Matt gave in, and I just LOVE it. Purely because my boy picked it out! The earrings that he bought me have also been getting a workout – ice-cream cones, donuts, watermelons, strawberries, slurpees… I hope his tastes change a little as he ages, or he may not hold onto his girlfriends very long!! xox
I hope your Christmas presents were as happily received as mine 🙂