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Family Weekend and Conference 2015

9 Oct

This week I have been trying to cross a few things off my very long ‘to-do’ list, and writing about the family weekend and conference we recently experienced has finally been given a few moments space.

Matt and I have different ideas about who had the thought that organising a second weekend would be a good idea! I’m sure he suggested it, but maybe I was dreaming. In any case, what I personally gained from the weekend, and what our family experienced has certainly confirmed that whoever’s idea it was, it was a great one.

It sure takes a lot of work to coordinate over 200 people, 41 families, for a weekend of education, recreation and celebration.

Friday afternoon saw the official start of our weekend, though we had already had many informal catch ups with other families since our arrival on Wednesday evening. After Dr Stephen Withers (geneticist) and Dr Honey Heussler (paediatrician) presented a session on Cri Du Chat basics and current research, we began formal registrations and our Welcome Event, including cape-making, faceprinting, balloon creations, sword fighting, equipment demonstrations, excessive amounts of sugar, and a few welcome speeches (tough crowd!). I can’t thank my volunteers enough for their support at this event, helping to ensure a relaxed and welcoming atmosphere for returning families and those meeting up for the first time.

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Festivities continued into Friday evening with a Siblings Party in the Kids’ Club, and buffet dinner for VIPs (those with CDCS), parents, carers, family and friends who had attended to support our event. After the kids were put to bed (thanks Nanna and Grandad!), some late night shenanigans ‘testing out’ the giant ball pit for Saturdays VIP program ensued! On a genuinely serious note, the casual catch ups in the lobby lounge with friends old and new were what really added value to the weekend for me.

Saturday saw our guest speakers lead adult education sessions with a focus on preparations for the National Disability Insurance Scheme, and maintaining and promoting positive attitudes to disability. Impromptu presentations form two families already in NDIS trial sites were invaluable in helping to prepare us all for what is ahead.

Carers Queensland counsellors and Benevolent Society volunteers worked with our siblings to answer the question: “What makes me a superhero?”. We also kickstarted a Super Sibling Pen Pal Project in this program, and Callum has excitedly received 2 letters already since arriving home. It will be great for him to continue to build connections with other kids who ‘just get it’.

Conductive Education Queensland staff took control of the VIPs (and the ballpit!) for the morning. The photos taken during this time scream happiness and belonging.

Saturday afternoon, we headed off with our families to explore Sea World. Our family adopted the help of Mikyla (a 28 year old VIP from WA) who was keen to push Claire’s stroller, feed her her meals, and cuddle her profusely for most of the weekend. What a sweetheart Super Miky i!

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Saturday night was time to party! A Superhero Soiree celebrating the achievements of our awesome VIPs and our families. AJ and Jane’s awesome photo booth stole the show, capturing pure delight! Jimmy tried to sneak a few kisses in with Claire Bear as per usual ;).

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Sunday morning we shared breakfast, and I spent a little more time at Sea World with my boy. The AGM on Sunday afternoon was the biggest the group has ever had! So wonderful to have such great attendance and to grow our group with representation now from four states. Plans are in place for biennial family weekends, preferably moving around the country. On the alternate year, we will continue to support parent workshops, helping to educate our families with access to guest speakers relevant to our journeys. For Claire, the information Matt and I gathered at the 2014 parent workshop resulted in medical interventions that changed her life for the better. We also had opportunity for our first weekend away together since Claire’s arrival.

To everyone who helped to support our fundraising and awareness-raising efforts in preparation for this conference…. THANK YOU!! I hope the pictures shared are enough to show you what a difference every dollar and every good wish has made. We couldn’t do this without your continued support.

Hannah x

And a few more pictures or those #cdcshero smiles….

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If you wish to commit to a regular donation to the Cri Du Chat Support Group of Australia, you can pop credit card details in at http://www.givenow.com.au/criduchatsupportgroup

Fundraising initiatives and corporate sponsorships are also invited.

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Do you know?

3 Jun

Do you know I have a daughter, who is worth her weight in gold,

Do you know the things I wondered? All the stories I was told?

Do you know how often tears fell as I gently felt her kick?

Do you know the thought of her arrival made me feel so sick?

Do you know that awful feeling when you’re sharing troubling news?

Do you know what it can feel like when the doctor says, “you choose”?

Do you know how to be ‘present’ when you want to run away,

When your eldest child so needs you, but you don’t know what to say?

Do you know for twenty weeks I wondered what was yet to come?

Do you know for twenty weeks before, I was already her mum?

Do you know how brave my husband was? What a rock he was for me?

Do you know he also ran his brain over every possibility?

Do you know how strong that I was on the day that she was born?

How I held my shit together, while inside my heart was torn?

How calm it was, how nice they were, how peaceful it all felt,

Until it finally came crashing down and I needed extra help?

Did you know her little body was a motley shade of blue;

That the room fell silent, almost like they wondered what to do?

Do you know they had to help my girl to take a little breath;

That the doctors and the nurses, surely helped evade her death?

Do you know she sounded like a cat, the first time that she cried?

Do you know they took my girl away, her Daddy by her side?

Do you know that it was hours til I held her close once more?

Do you know how hard it was for him, and all the things he saw?

Do you know they let us take her home, like ‘normal’, five days old?

Do you know how strange that was for us after all that we’d been told?

Do you know the fear that surfaced when it finally was able,

When the info was presented, and the cards laid on the table?

Do you know the battles that we’ve faced, the fear and desperation?

Do you know the milestones that we’ve met with joy and adoration?

Do you know how strong we’ve had to be? How tough we really are?

Do you know the people that we’ve met and how we’ve come so far?

Do you know that countless other parents face such fears each day?

Do you know that you can’t judge them til you’ve ever felt this way?

Do you know that sharing stories is one way that I survive,

And that I marvel at my miracle each day that she’s alive?

Do you know how grateful that I am for those who really care;

For the family and friends who see the gift that’s present there?

Do you know each tiny milestone redirects us where to go?

Do you know how much I love her? Really? Do you know?

H008

Term one is done!

31 Mar

I have been really terrified to celebrate too soon, the success that kindergarten has been for Claire. Our family, friends and extended community have funded this, and so many people have been ‘in our corner’, helping to ensure the successful inclusion of Claire in the kindy program of our choice. I was feeling the pressure to ensure that things went well.

Term One is DONE!

The acceptance and support shown by Claire’s teachers, her classmates and their parents has been nothing but positive. Claire is a valued and included member of her class. I can see the Sparks of recognition when we talk about her kindy friends, and I love that she waves her hands when we say good morning and good bye each kindy day.

There are beautiful little boys and girls in that class who acknowledge and accept Claire’s differences. They go out of their way to greet her each morning. They encourage and support Claire’s learning in a way that has clearly been modelled by their teachers. They include her in their games, and accept her amorous visits into their beds at nap time!

There are just as many beautiful boys and girls in that class who don’t appear to even see Claire as anything more special than ‘just another classmate’. And this is also perfect in every way!

This term, Claire has learnt that putting on her uniform means that it is a kindy day. Claire has learnt a new routine and most days has managed this with ease. Claire has learnt to draw and paint with some assistance, skills we have been working on for quite some time to no avail! Claire has enjoyed water play, playdough, sandpit time and a whole bunch of new and exciting toys that have been sourced from The Noah’s Ark equipment library.

As a family, we made a concious decision for me to remain ‘on call’ for kindy days. In ten weeks, I had just one call during the day from kindy, when Claire was struggling to communicate what was making her upset, and while I came early to collect her, instead I stayed to support her completion of the kindy day. It has been wonderful to be able to be ‘a kindy mum’ again, collecting Claire each day and seeing familiar faces and making new friends, both adults and those 4-year-old treasures!

A massive high for me was Claire receiving an invitation to the birthday party of a new kindy friend. Unfortunately, my personal lack of organisation meant I missed collecting the invite until after the party had occurred, and I was mortified and embarrassed that this was the case. Needless to say, I check her pigeon hole religiously now!

Claire is a kindy kid. Claire is in a mainstream class. Claire is experiencing a fully inclusive educational setting. For this I am so incredibly thankful.

Kindy is even so much better than I could ever have imagined it would be. At the moment I wish Claire could stay there forever!

The lobbying continues, now with evidence on my side to confirm what we thought to be true. Kindy Counts for EVERY child.

How to help get Claire to Kindy

12 Jan

Claire Matilda

People are contacting us asking how to help, and we are very grateful!

The short answer:

  1. Share, share, share our posts and links on Social Media (and ask your friends to do the same). This truly has a genuine impact on any campaign. We have already been contacted by the Kindy Counts office regarding our posts to their wall and the interest and discussion that was being generated :). Thanks!!
  2. Write an email or a letter. We need to draw attention to the bigger issue, beyond just getting Claire to kindy. Kindy Counts for ALL Queensland children, and we want to remove this obstacle from the path of families who follow a similar journey in the future. ASAP! There are tips on what to include below.
  3. Make a financial contribution to the Everyday Hero ‘Help Get Claire to Kindy’ Campaign (Supported by Variety, the Children’s Charity). We are almost…

View original post 1,071 more words

The Gift of Stella

15 Dec

The hardest part of this journey by far has been having our eyes opened wide to the fact that life is not always fair. There is nothing fair about illness that debilitates a child, or that takes their life.

Three years ago today, a gorgeous girl was taken way too soon from her beautiful family. Stella had suffered for almost a year from hideous seizures as a result of Mitochondrial Disease that presented shortly after her first birthday. Claire and I were lucky enough to cross paths with Stella’s journey through therapy the girls attended together. Once I met Stella’s mum, Chelsea, it was impossible not to become her friend.

Chelsea is a model of strength, composure and determination to me. She epitomised what I see as an incredible example of being a mother, and continues to do so with her two gorgeous boys and the precious bump on its way.

I have learnt so much about everyone’s problems being relative to their own situation. I have learnt how we all use the experiences of others to help us to feel more at peace with our own journeys. It’s natural to compare your existence with that of those around you. Chelsea once told me how much easier her journey has been than mine, because there was an end to the care-giving phase. I was astounded that that was her observation, as I could not have disagreed more. How blessed I felt to have our precious Claire with us, and how much my heart ached for Chelsea when she had to say goodbye. It still aches for her each time I think of Stella. I imagine her comments were more about finding justifications that would help her to move forward.

Beautiful Stella has had such an impact on my life. I couldn’t help but watch the grief unfold without feeling that it could have been us. Despite the false suggestions that Claire would likely not survive beyond four, until I followed the journey with my own eyes, I was unable to process the way that journey would play out. Stella’s story helped me to be at peace with the diagnosis of Cri du Chat Syndrome, and to become so very grateful for what this diagnosis would not mean for our family.

Stella has been such a gift to my life. Today I’ll do something special to remember this sweet girl. I’ll hold my kids just a little tighter. I’ll share the story of this precious family. I will send kisses and hugs to the stars.

Twinkle twinkle, Stella Grace,
We know you’re in a special place.
You’re missed each day by friends who know,
How hard it was for you to go.

XOXO

Editing is Exhausting

11 Dec

People often tell me how amazing I am, and how well I ‘handle’ all of the responsibilities that come with being mum to Claire. They ask how on earth I find the time to advocate for her needs, but the truth is that I just don’t see it as a choice.

I don’t want ‘being a special needs mum’ to define me, anymore than I want ‘having Cri du Chat Syndrome’ to define Claire. It certainly is a part of who I am, but I have so much more to be and give.

When people comment about how well I take it ‘all in my stride’, I smile politely as I realise they haven’t popped in to our house unexpectedly, to find the chaos that ensues. Housework around here comes second (or third, fourth, fifth…). I feel so lazy and berate the boys for being so as well, but there really is so little time left each day to attend to thorough cleaning!

When people tell me how amazing Callum is with his sister (mostly in response to photos shared via Facebook), I agree wholeheartedly, but am reminded that they are definitely only seeing the highlights of this relationship!

When people comment on how far that Claire has come, I am always proud and encouraged. She truly has made great progress. I record her standing near a wall, and cut the clip the second before she spills awkwardly to the floor. We celebrate each tiny achievement and work to extend the duration of her efforts more and more each time.

Sometimes I look in the mirror and am met with a frightful image of myself. I wear bags underneath my eyes and my hair might be greasy and unkempt. These are not images I photograph to update my Facebook profile :). I save those updates for the days when I manage to find time to shower, apply makeup and get out of my PJs before lunch!

I have become a master at editing. I share our highlights and hide the moments where things don’t go quite as planned, and believe me, there are many. The meltdowns, the sleepless nights and the ‘toileting’ debacles that are too hideous to share with untrained eyes and ears, are saved for the out-takes roll, usually shared only with those I know will truly understand and not judge! Those who won’t relate these experiences to the person Claire is as a whole.

In my first year as a mum, I was very grateful to share the experience with a number of other friends who were novices too. The support was incredible. This time around, the friends who had newborns when Claire was new were almost immediately tracing a different path to mine. This was just the reality of the developmental delays we faced. It’s been bittersweet to watch her peers grow and achieve milestones so much faster than Claire.

I can’t edit everything, and sometimes I need to seek support. There are parts of the journey that we can’t manage alone, and that’s when we will share a little more depth of our story. Thanks for trying to help us navigate these obstacles.

How to help get Claire to Kindy

10 Dec

People are contacting us asking how to help, and we are very grateful!

The short answer:

  1. Share, share, share our posts and links on Social Media (and ask your friends to do the same). This truly has a genuine impact on any campaign. We have already been contacted by the Kindy Counts office regarding our posts to their wall and the interest and discussion that was being generated :). Thanks!!
  2. Write an email or a letter. We need to draw attention to the bigger issue, beyond just getting Claire to kindy. Kindy Counts for ALL Queensland children, and we want to remove this obstacle from the path of families who follow a similar journey in the future. ASAP! There are tips on what to include below.
  3. Make a financial contribution to the Everyday Hero ‘Help Get Claire to Kindy’ Campaign (Supported by Variety, the Children’s Charity). We are almost a quarter way to the goal, meaning that term 1 is good to go! We are sooooo excited that Claire will have the support she needs. If you know of a business who may also be willing to contribute, please share so that we might meet our goal even sooner.

The longer answer:

Just two days ago, a kind couple from Brisbane established a fundraising page to specifically raise funds through Variety the Children’s Charity to pay the shortfall required to allow Claire to have full access to her 2015 Kindergarten program with a full-time assistant. The cost for the assistant for the year has been estimated at $13662. The support provided by the Queensland Government is $6000. This leaves a shortfall of $7662. To ensure that the everyday hero charges are catered for, and to cover any additional equipment or resources that may not be available for the kindy to hire through Noah’s Ark, the goal has been set for $8500. The funds raised will be transferred directly to the kindergarten for use to support the cost of Claire’s inclusion support aide.

In less than 48 hours, the power of social media has assisted fundraising efforts to be almost enough to cover the entire shortfall for term 1! We are blown way by the financial contributions, and just as importantly, the efforts of our family, friends and community followers to share the link to the Everyday Hero page.

Our dream will be realised and Claire will be able to attend kindy full-time, increasing her opportunity for inclusion, thanks to the generosity of so many people who see the benefits of this for Claire and her wider community.

Our goal beyond Claire’s inclusion, is to change the way that inclusion support is funded for kindergarten programs in Queensland Kindergartens and Long Day Care Centres. The Queensland Government is so right in saying that Kindy Counts. Even more so, for children where a mainstream education could prove to be more difficult as they grow and the gap between them and their peers widens, opportunities for full inclusion at this level should be easy to access.

Petitioning State Parliament

As a family, we will soon meet with our state Member of Parliament, Mr John McVeigh, to request his support in petitioning the Queensland Parliament for change in current practices. Our meeting scheduled last week had to be postponed due to Callum needing unexpected surgery after an accident on his motorbike (he’s on the mend now!). We need the support of others to make this change so that all children can have a suitable level of assistance for their attendance at kindergarten, and that the process is equitable no matter what region of Queensland you live in, whether you attend a program in a branch or affiliate C & K service, or any other approved kindergarten program. We are not the only family facing this challenge.

We would like to encourage families in a similar position, families with children who access kindergarten or will in the future, aunts, uncles, grandparents and friends of anyone who will wish to access a Queensland kindergarten, and anyone else who supports the idea that a more equitable process is required, to write to your state member and also to the ministers listed below. This issue affects all kindy kids and families. The lack of funding is having a direct effect on the resourcing for children without a disability too, when centres are having to use  fundraising dollars and fees to cover shortfalls. Claire and other children with a disability will be using the paints, papers, sun sails, puzzles, etc too!

For those who have asked for the factual information required to include in these letters and emails, here are the key points for our personal situation, and some background information that may be of use.

  • In 2015, we want Claire to attend the full kindergarten program (5 days a fortnight) at a local C & K Community Kindergarten (affiliate).
  • The program is 32 hours per fortnight, and available funding supports only 14 hours per fortnight of aide time.
  • The cost of the aide to be in attendance with Claire for the full program is estimated by the kindy to be $13662 for the year.
  • The Queensland Government provides a MAXIMUM of $6000 towards this amount.
  • Children with a Health Care Card (most children with a disability) also receive the Kindy Plus Subsidy, which reduces the daily fee cost to our family significantly (I think it costs about $5 per day for Claire to attend and about $30 per day without a HCC). – The irony in this is that they are almost fully subsidising a program that without a full-time aide, Claire is unable to attend. Ouch!
  • Currently, any shortfall in funds available to support inclusion need to be met by the centre or organisation managing the kindergarten. This is problematic if centres consistently have children attending who require high levels of support. It is difficult for a kindy to exclude a child, as this of course would be discrimination, but a more systemic approach to funding is required to support kindergartens and day care centres.
  • We recommend that the process be modified to support the full inclusion of all Queensland Children who wish to attend kindergarten.
  • Disability is extremely varied, and not all children would require full support, however this needs to be looked at on a case by case basis.
  • The benefits of attending Kindy will be enormous for Claire. We expect that she will have a significant increase in her communication skills, with constant exposure to peer language and activity. We expect her to be more motivated to participate and interact with others. We expect her motivation to walk to be further increased.
  • For her peers and their families, and her teachers, having Claire in their lives and a part of their community is so important in encouraging inclusion, acceptance and respect for people living with a disability and for diversity. We know that so much can be gained and learnt from spending time with this amazing girl.

Please address your letters of support to:

  • Minister for Education, Training and Employment – John-Paul Langbroek MP (education@ministerial.qld.gov.au)
  • Minister for Communities, Child Safety and Disability Services – Tracy Davis MP (ccsds@ministerial.qld.gov.au).

Thank you again for your continued support!

We would not change Claire for the world,
but we will change the world for her!

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