Let the celebrations begin!

I was a little reluctant to begin celebrations today for Claire’s birthday, but after being invited to a friend’s house for early Melbourne Cup lunch, it seemed like an ok idea to accept her suggestion to bring Claire a cake :). Claire won’t officially turn two until next Thursday, 8th November, but today we had what Callum called a “Practice Birthday” and a “Pretend Birthday”, with some good friends. Thanks to those who shared the day with us!

Claire made my day this morning when I opened the fridge to show her the cake I had slaved over last night. After only a few seconds, she signed ‘frog’, and I knew Callum had made the right choice in choosing her cake for her.

I was a little worried it looked a bit like a lizard, but Claire squashed those concerns. It was evident that she was impressed 🙂

So, the countdown to Claire’s birthday has officially begun. In eight days time this amazing little princess will be 2, and I can hardly believe it. We must have had loads of fun in the past two years, because time certainly seems to have flown by.

I hope you enjoy the action shots of Claire’s unexpected “cake smash”.

This slideshow requires JavaScript.

DisabiliTEA time again

One of the best parts about Claire entering our lives is meeting some beautiful new friends, and in turn meeting their beautiful friends. One of these new friends was generous enough to host a DisabiliTEA last Friday to raise awareness of the importance of Australia having an National Disability Insurance Scheme (NDIS).

An NDIS would allow funding to be distributed more appropriately in accordance to need, rather than diagnosis. It would allow individuals and families to have opportunities for choice in terms of their care.

While Claire has been ineligible for some funding due to the rarity of Cri Du Chat Syndrome and the lack of documented evidence that therapy would assist her development, and while that looks hopeful to improve somewhat in the new year, there is still an immense amount of inequity regarding services for people with a disability in this country. There are so many children who have significant developmental delays, but the cause of these delays has been undiagnosable. Some of these children miss out altogether on any financial support.

While children born with disabilities is obviously an area we have most to do with at this time, there are so many other individuals and families who would benefit from an NDIS. At a Carer’s Queensland event that I attended a few months ago, I had the privilege to spend time with 20 other carers, and to hear their stories. Some had children and adults who had been born with a disability, others were caring for someone who had been struck down by illness, or significantly disabled as the result of an illness or injury. Everyone of these carers and their families would benefit from an NDIS.

This is my favourite advertisement for the NDIS, with a clever quote that reminds us that no one is ‘safe’ from the effects of disability. It really can effect any individual or family at any time.

Last year I hosted a DisabiliTEA at home and felt very supported by all who attended, and those who could not, but who still joined the campaign. The number of Australians who have joined the campaign has been instrumental in raising awareness and gathering more support. Steps have already been taken to begin trials of an NDIS in various states across Australia.

I was very grateful this year to be invited to a DisabiliTEA early on so that I didn’t feel I had to take on another thing to organise myself! Jen put on a lovely morning tea in Coomera Waters and it was lovely to meet her friends and to share a little more about Claire, and two of her friends with Cri Du Chat Syndrome.

It was also lots of fun to watch Jimmy push Claire around in the baby walker, and THEN to see him take multiple independent steps. Jimmy is five months older than Claire and is doing remarkably well. He is a true inspiration to us all. As I have written before, having his family in our lives has been an absolute Godsend. To be able to share the highs and lows with people who truly understand where we are at is such a gift.

Thank you Jennifer (and Zoe) for inviting us to this important event. It was a fun and relaxed morning and I hope we have more opportunities to catch up.

Oh… and Jennifer is certainly a great host, but she also writes a wonderful blog, Less Than a Pineapple, through which she generously shares her bargain fashion finds under $50. It is absolutely worth a look, but if you can’t resist a little online shopping, I suggest you hide the credit cards before you do 😉

A Better Start for Children with Cri Du Chat Syndrome

Today is a day to celebrate. News of the extension of the Better Start For Children with a Disability Package is a bittersweet victory for many families who have been fighting for their children’s eligibility, but who are also keenly aware and empathetic to the disappointment of so many families whose children have still been excluded by this package.

The Better Start for Children with Disability (Better Start) initiative includes:

• up to $12,000 in funding for early intervention services and treatments for eligible children
• additional assistance for eligible children who live in outer-regional, rural or remote locations to help with the costs of accessing services
• a Medicare item for the development of a treatment and management plan for eligible children up to the age of 13
• Medicare items for up to four allied health diagnostic services, the results of which contribute to the development of the treatment and management plan, and
• Medicare items for up to 20 relevant allied health services in total for each eligible child up to the age of 15 provided the treatment and management plan is in place before the age of 13.
  (For more information, click here)

News of the Better Start Funding criteria was our family’s first taste of inequity in relation to Claire’s disability. Everything we read about raising child with Cri Du Chat Syndrome indicated that quality early intervention was vital to allow her to meet her full potential. Therapists we worked with in the early days reinforced this idea, as did our interactions with CDCS families world wide. Yet, due to the relative rarity of the syndrome, and a lack of research-based evidence that early intervention benefits children with CDCS, Claire’s syndrome was originally not one of the few listed as eligible for this package of financial support.

For almost two years, the words “Better Start” have brought me much frustration, anger, disappointment, and bewilderment. How on Earth can the government get away with this blatant discrimination against minority groups? How injust was it that because Claire’s disorder was so rare, there was no current research and therefore no real ‘proof’ that early intervention would work at all? How unfair it is to suggest that some children deserve a “better start” more than others. David from the Australian Rubinstein Taybi Syndrome Support Group created this video that clearly articulated the frustration felt by many Australians:

When an independent review of the funding package was released late last year, it articulated everything we already know about the benefits of early intervention. Cri Du Chat Syndrome and another handful of rare conditions were recommended to be made eligible for the funding, but I was still disheartened. This was good news for Claire, but by this time I had made good friends with many parents of children with other special needs who were still deemed as ineligible. I felt like we were about to be shifted from the “have nots” to the haves”.

Almost a year later, here we are. We are on the “have” list, or will be by January 1st anyway. I must celebrate the achievements of our Cri Du Chat families for raising the profile of Cri Du Chat Syndrome. This would not have happened without the support of many extended family and friends, who have respectfully talked about our children, shared our stories and in many cases, written to or spoken to their local, state and federal government representatives. What you have done to help raise our profile has already made a significant difference to many families.  Thank you.

However, this leaves the “have nots”. It was with much disappointment that I read the new eligibility statement today, discovering that it still neglects to encompass so many of our friends, and other children all across Australia, who really deserve a better start. Early intervention is vital for ALL children with a disability. A more generalised statement of eligibility would be more beneficial than diagnosis-based assessment. It also needs to be said that when children reach 6 or 7 years of age, there potential to learn does not cease, and their needs for continued support need to be considered. I feel a particular disappointment tonight for our CDC families who have narrowly missed eligibility due to their child’s age, despite fighting for inclusion in these packages (and similar) for a number of years.

Advocacy for these children requires energy and determination, and maintaining these qualities can be challenging in the face of despair. Please help these families to be heard by following their journey on Facebook or by signing the online petition.

I am not naïve and I do realise that there are not unlimited funds available, but I do feel that a more equitable expenditure of funds across areas that are in significant need of support would be beneficial.

The inclusion of more disabilities in the eligibility criteria today is at least a step in the right direction. I commend families of children with Prader‑Willi, Williams, Angelman, Kabuki, CHARGE, Cornelia de Lange, Cri du Chat and Smith‑Magenis syndromes and microcephaly for their continued advocacy for their children. Let’s celebrate this as an achievement. I encourage our friends whose children have diagnoses of different conditions to be proud of your efforts too, and to continue your advocacy for your children. Know that others will be continuing to promote this inequity and supporting your efforts as best we can. As a united force we have a much better chance of being heard.

The Siblings

Hmmm…. I spend life attempting to spread myself equally between my children, but it only takes a quick photo to remind me just how easy it is for Claire to become the centre of attention.

 

Don’t get me wrong, Callum gets his fair share of attention, but the fact is, that Claire simply needs much more help, assistance and support than your typical almost-two-year-old kid. And when, I look at Callum, sometimes I feel mighty guilty.

 

As a reminder to me to update Claire’s page more often (um…not working at the moment!), I have the internet browser set to open up to her page when it launches. “Claire Matilda” in bold lettering and three pictures of her beautiful little face, often send a wave of guilt through me. I consciously avoid having the page open for more than a second if Callum is in the room for fear that he will see the inequity of photo sharing and resent her presence.

 

The new(ish) ‘play area’ in our house is very much oriented at the needs of Claire. A sensory swing, a ball pit, a purpose built chair, and her standing frame, stick out as another reminder that Claire is the focus of much in our lives. Don’t get me wrong, Callum enjoys the swing and ball pit immensely and should thank the arrival of his sister for us loosening our sense of what is ‘right’ for a play space in the main living area. There is no way Matt would have agreed to that swing hanging where it is had it not have been for Claire, and there is no doubt that it is a great source of enjoyment for Callum, Claire, and countless visiting children!

Where possible, we attend Claire’s therapies on the days of the week that Callum attends his kindergarten. This is not always possible though, and with each appointment, I need to make a decision as to whether it is best to leave him with a helpful friend or relative, or to drag him along to waiting rooms and sessions where the focus is ‘all about Claire’. My heart breaks for him as he battles for attention, only to be told that a therapist is ‘working with Claire right now’. In my mind, I know that it is often much more fun for him to be somewhere else, but I miss him and feel guilty when I take off yet again with just Claire in tow.

 

We have an iPad at our place, courtesy of the Gold Coast Community Fund. Yes, it is Claire’s, and we are working with Proloquo2go to develop her communication skills. Callum also loves to play with it at times and of course this is allowed. However the hot pink case, and reacquisition by Claire so that she can express her needs as and when she chooses, are pretty clear indications that it isn’t his. Another ‘ouch’ moment for an egocentric four-year-old I’d think.

 

Callum takes most things in his stride, and I know he loves his little sister immensely. He can be very protective, but also likes to stir her up, as any older sibling would do. I should know…I have two.

 

In his defense, with her significant progress during the last few months, Claire has taken on the natural role of younger sister. She is starting to give as good as she gets. She can be a bit of a drama queen (must get that from Matt ;)) and can kick, pinch, scratch, bite, and pull hair quite well. These are all wonderful indications of her fine and gross motor development of course, but perhaps not the most welcome behaviours in the eyes of her four-year-old brother. She also appears to hold a grudge, and is less than forgiving when things don’t go her way.

As un-fun as these interactions sound, they are interactions none-the-less, and Callum and Claire are becoming good friends. While Claire has always noticed Callum and attempted to interact at times, her delayed reaction times, and his faster-than-a-speeding-bullet-approach to life have made ‘conversation’ between the two quite difficult. Callum’s attention span can be quite limited and he looks for action and reaction. With his sister, that has been difficult to come by.

 

This morning, Callum asked me to read a book to him, Wombat Devine. Quite coincidentally, his request coincided with a burst of giggles from his sister. “She thinks the big fat wombat is funny!” he said to me. To Claire, in his sweetest voice, he said, “Do you like the big fat wombat, Clairesy? Do you want to read the story too? Awwww”. More giggles and a beaming smile from Claire. I was on Cloud Nine.

 

More than anything, Claire has taught Matt and me patience. Some times it feels like time is standing still and we aren’t moving anywhere, then, on a day like Monday two weeks ago, when Claire crawled for the first time, she will amaze us all and do something so significant that all the waiting is made worthwhile. For Callum, patience is a virtue he is yet to fully acquire. Anyone who knows him would realise that a ten second wait time would be like a lifetime. He has commented on more than one occasion that “Claire is taking a really long time to grow up”. ‘Ouch’ for mummy.

 

Claire’s ‘crawling’ has continued (commando style is the current choice of method though), and Callum is a great help in encouraging this. His excitement at this achievement brought me more tears than the actual achievement itself!

 

Claire signs “brother” at least ten times each day…this morning just a few minutes after she awoke to find him still in bed. We are quite sure that she is attempting to make a vocalisation for brother and Callum at times, though it is only recognisable to those who inhabit our house.

 

Their interactions are becoming more often and more varied and we are conscious of encouraging Callum and Claire time, as well as Callum and Mummy time, and Callum and Daddy time. Some of these times are scheduled, but more and more, they are just the natural course of our daily lives. I would imagine finding this status quo would be challenge for any family with a new sibling. The challenge here is that Claire has remained in the ‘baby phase’ for soooooo much longer than a typically developing child would, and she could be here for quite some time.

In January, Callum starts school. Claire will miss him immensely. Me…even more so. I know he is ready, and I know it will be so good for him. Until then, I plan to work extra hard to focus on our time together and to have fun with my beautiful boy. I love him with all of my heart and as long as he knows that, we should be on the right track to avoiding the resentment and jealousy that are my deepest fears.

 

Perhaps I don’t need to be so hard on myself… I have noticed tonight that there are no less than eighty printed photographs of Callum around the house (including his baby photos on the shelves in Claire’s room!), and you would be hard-pressed to find more than five of Claire. Oops. I hope she doesn’t notice 😉