Archive | March, 2012

One day at a time

20 Mar

Last week I was looking for a particular photograph when I came across some photographs of Callum at 16 months, the same age as Claire is now. The photos were of our trip to Sydney, to celebrate my 30th birthday. This was a memorable trip that had us racing across Sydney in an Ambulance only hours after our arrival, after Callum hit his head heavily on the sliding door frame just minutes after checking into our hotel. Nothing like a little adventure to add to the holiday experience!

In looking at those photos, I was faced with the drastic contrast between the development of my two children. At 16 months, Callum was picking up and throwing fake fruit in the hotel room, racing along the pier hugging every pole and shouting “tree”, climbing up and down the stairs of the Sydney Opera House for almost an hour, standing in his stroller and jumping out, cheekily calling “bum face!” as he perched atop his cousin, Sophie (‘bum face’ was a favourite game at the time!).

While the photos bring such wonderful memories of times with Callum at that age, a tinge of sadness followed. Claire is so far away from demonstrating an ability to do any of these things. Already, she is lagging way behind many of her peers. However, what offers much consolation is that I am confident that Claire will be able to do all of these things in the years to come. Ok, so I’m confident about the throwing, the standing, the climbing and the racing, and I’m hopeful that one day Claire will speak, though “bum face!”, I could probably do without.

Both my children are amazing. Where everything seemed to come so easily to Callum, Claire faces the extra challenges of her little body not being strong and able enough to do quite what she would like it to do, yet, but she shows determination as she persists with her efforts and makes steady progress. She tolerates hours and hours of therapy and structured play each week. I think the nice part about watching Claire’s development is that I relish in every minor achievement and progression. So much of what Callum did was taken for granted. Now though, I am so much more aware of the progress that they each make and silently celebrate each small step (sometimes not so silently too!).

A resource that I have found very useful to supplement the tasks we are given from Claire’s multiple therapists is One Day at a Time by Scope, Victoria. This resource breaks development into four areas: Communication Skills, Moving Around Skills, Using Hand Skills, and Play Skills. These checklists feed the teacher in me, giving me a better understanding of the progression of these skills and ways that we can help Claire to achieve each indicator. The name also makes a great mantra to follow. With Claire’s development, we just take everything one day at a time.

Some days, Claire just amazes me immensely. On Friday, Matt and I were both blown away when we put her down for her morning roll around and she pulled her knees up under her body independently and lifted her tummy off the floor while perching on her elbows; several times and for lengthy periods of up to 30 seconds. I am so proud of Claire for this achievement. This seemed such a leap from the forced efforts of pushing her into a four-point kneel over the past months, encouraging her to hold her tummy up and use her arms to bear her weight.

In Winter last year, we watched Claire battle a string of what seemed like endless colds and chest infections. For at least two weeks out of every month she was miserable and she would stop showing signs of progress, sometimes almost seeming to go backwards and forgetting things she had learnt. This was very disheartening. It was difficult to see our gorgeous girl feeling so unwell and being so obviously miserable. We are hoping that her increased mobility will assist in avoiding the worst of this Winter and that her recovery when she does fall ill will be much faster.

Taking things one day at a time allows us to see what Claire is capable of and willing to do, and gives us opportunities to push her just that little bit further. The sky is not the limit – people have been to the moon, right? This amazing little girl can achieve anything.

To give you an idea of Claire’s current levels of development in each of the areas outlined in the One Day at a Time resource, here is a summary of what Claire can do at the moment and some of the things we are working on:

Communication Skills:

Claire signs fairly consistently for ‘more’, ‘drink’, and ‘food’. She also uses an open hand to pat her body when she wants something, and is very good at looking at what she wants. When we ask Claire, “What is your name?”, she often touches her chest, the sign for ‘me’. Claire is very good at making choices by looking at cards, particularly during music sessions. She will also look at her cup during meals if she wants a drink and couldn’t be bothered to sign! It is amazing how she manages to get her meaning across to those who know her well. Callum is very good at working out Claire’s requests.

Making sounds is a real challenge for Claire. She has managed to make the ‘mmm’ sound on occasions, but it requires much persistence and patience on our part. She really takes a long time to process things, but if you give her a little time, she will often follow commands such as ‘clap your hands’, and ‘give me a kiss’. Patience and wait time is paramount.

Things we are working on at the moment:

  • Encouraging babbling conversations
  • Use of PODD to build language
  • Encouraging attempts at speech (more, boo, bubbles, dad, mum)
  • Building repertoire of signs
  • Making choices (song cards, iPad, mealtimes)
  • Identifying objects (eg. cup or spoon, body parts)

Moving Around Skills:

Clare is able to sit unsupported and independently for a few minutes at a time. However, she has a VERY bad habit of throwing herself back when she has had enough, without any warning. For this reason, we obviously can’t leave Claire unattended in a seated position! She really has developed a lot of core strength over the past month. She has even managed to work out how to remove herself from the Bumbo seat and she throws herself out of her corner chair too. She can be stubborn when it comes to sitting if she doesn’t want to do it.

We try to put Claire into her monkey standing frame twice a day, unless she has another physical therapy session that day (hydrotherapy, physiotherapy, conductive education). Claire is getting very good at tolerating periods of up to 30 minutes in the monkey. She is most compliant when entertained by water in the tray, and her light-up ducks (Thanks, Helen!), or the iPad. Claire also has a bad habit of throwing herself back without warning in the frame, usually to signal she has had enough. A little warning would be nice though, as it takes about 30 seconds to remove her from the frame and this is made more difficult if she is thrashing!!

Claire can move around the living area very effectively by rolling at the moment. I have lots of little snippets of video of Claire since her birth and when I get a spare minute (ha ha ha!! Maybe I should ask someone to volunteer to do it for me!) I intend to compile them into a short movie so that everyone can see just how far she has progressed physically.

Things we are working on at the moment:

  • Practicing independent sitting
  • Standing in monkey frame
  • Being held in a four-point kneel
  • Pivoting practice

Using Hand Skills:

Claire has just worked out how to throw things from her high chair. Super clever, and super cute, but even after only two weeks, we are already thinking that playing that game was just a little bit of a bad move. Food and drinks are the latest missiles.

The biggest challenge at the moment is encouraging Claire to point. This is really going to help her use of the iPad and the PODD. With the iPad at the moment, she tends to repeatedly bash the screen. I am trying to get her to use more control, and to make active choices from the screen rather than just look for cause and effect sequences.

Claire’s hands have become SUPER-sensitive of late. She has some obvious sensory-processing issues that are most evident when we try to get her to grasp things like hoops and rods. She is happy to grab things of her own accord though and demonstrates this beautifully when she reaches for choice cards during music sessions, or attempts to self-feed (M.E.S.S.Y!!!!).

Things we are working on at the moment:

  • Putting things in and out of boxes
  • Pointing (PODD, iPad, books, choice cards)
  • Desensitising hands (textures-fabrics, feely box, touch books, finger paint)

Play Skills: 

We have spent a lot of time trying to get Claire to actively respond to us in play. We do lots of peek-a-boo and making funny voices to incite giggles. Claire has recently learnt to wave in response to the command and has been clapping for quite some time. We do a lot of singing and go to music therapy twice a week as I see the best response from her in these sessions in terms of interacting with her surroundings.

Claire loves cause and effect toys, particularly her crocodile xylophone, her music mat (Thanks, Erin & Sariella!), and the iPad baby piano – anything that makes a noise when she BASHES it! She also loves to roll over to her sensory swing and to lay underneath in and kick it to make it move. Her Grandad noted that she was quite likely very impressed with herself being able to make such a big impact.

Things we are working on at the moment:

  • Open hand play (textures)
  • Controlled bashing 🙂
  • Grasping and letting go (rod, hoop)
  • Drawing with crayons
  • Stacking blocks and placing then in and out

Life can be busy around here, but it’s lots of fun! I have taken the attitude that this is my full-time job and I really want to do it well. I want my kids ready for school (yes, I have a program for Callum now too based on the Scope indicators!) and I want to have the peace of mind that will come with knowing we have done everything we can to get Claire to that point. We have so many supporters who believe in us enough to back us financially and we appreciate that so much. We want to do EVERYTHING we can to give Claire the best start possible.

Writing this post has been really uplifting for me as I am able to see just how far Claire has come. I look forward to continuing to share news of Claire’s progress with you all and being able to look back at these posts along the way.

Thank you for sharing our excitement when Claire does new things. We love how much of an impact that each small step has on so many people.

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YummiRainbow Yummibums!

12 Mar

Perhaps I am getting a little more emotional as I age, or maybe I’m just going crazy. Today, I collected a parcel from the post office, and I when I opened it up, I cried! I wonder if everyone does that when they receive their first parcel from Yumminess Textiles? I was so excited about those tiny rainbow ruffles. I was also absolutely surprised by the carefully wrapped second parcel inside, with “With love from Nancy” written on the tag. This was such a lovely surprise – it moved me to tears.

A couple of weeks ago I posted a picture on the Community of Claire Matilda page. It was Claire standing in her monkey standing frame watching the Wiggles. She looked super cute, especially with a hint of Yumminess poking out under the lower velcro strap. For those new to the “ruffle butt world”, ruffled nappy covers are all the rage and there are numerous talented work at home mums (WAHMs) who sew and sell their wares on Facebook. Claire is lucky enough to have a couple of hand-me-down Yummibums (Ruffled nappy covers by Alana at Yumminess Textiles) from her cousin, Emma – who happens to be three days younger than Claire ;). Emma’s mummy, Selina, is a very big fan of all things Yumminess, and it has been easy to follow that lead. Alana’s work is beautiful!! It is also very highly regarded, and difficult to get your hands on – these ruffles sell out sooooo quickly!

Anyway, Selina tagged Alana in the image so she could see the cute little ruffles peaking out, and a conversation began regarding what I believe to be the cutest butt in Australia (Claire’s, not mine). When rainbow ruffles were suggested as a match for the orthotics, Alana very kindly offered to make some! In the meantime, Selina and I tried to snap some others up for Claire at Alana’s online market night, but we were unsuccessful. So patiently, I waited for news of the much-anticipated rainbow Yummibums…

Alana posted on the Yumminess wall that she was having a hard time getting back into the swing of things after a quick trip to Bali – she had lost her sewjo :). Lucky for us, the YummiRainbow Yummibums were all she could summon energy and inspiration for, and my oh my were they amazing!! When Alana posted a picture of these on the Yumminess Facebook wall, there were over 200 likes and 60 comments within a few hours! Everyone was in love with these tiny ruffles, and they were for OUR gorgeous girl. So lucky!!

The best news was that Alana then decided that after Claire’s, these style ruffles would be a range exclusively for donations. That same week, she made three more pairs and raised $500 for Mums like Me, an organization that donates memory boxes to newly bereaved parents. This further shows what a lovely and generous person Alana is, as well as extremely talented. I am super excited that it was The Bear’s butt that inspired this beautiful work.

In the package today, were two neatly wrapped parcels, each with a cute Petal Blossom complementary hairclip attached. The second parcel was a gift from my friend in the United States, Nancy. I have no idea how she managed it, but Claire now has some ‘Blue Bijoux’ Yummibums and some ‘Pink Paisley’ ones to grow into too (Sorry, Emma – not quite big enough for hand-me-ups!)!! What a wardrobe!!! All pairs look fabulous with her rainbow orthotics – being cute makes it all just a bit more bearable :).

Thank you, Selina.

Thank you, Alana.

Thank you, Nancy.

You have made my heart sing xox

PS. My iPhone does not do the colours justice….I will be off to borrow my neighbour’s camera and take a better picture sometime soon!!

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