Class of 2016

This is it. The culmination of 7 years…12 years…39 years. I didn’t anticipate when my family moved to this little foothills town 39 years ago that my children would attend the same lovely school as me but they have. And now they won’t.

What began again twelve years ago with her brother was celebrated last week and will finish tomorrow.¬† Our gorgeous girl is growing up and moving on, just as she should, and she’s excited. Me? I’m sad and nervous and not ready. I have (because it’s all about me ūüėČ ) been an emotional sop all week. I cried watching kids I didn’t know at the school concert, ¬†am getting mushy over Christmas ads and bawled on graduation day when I bumped my hand. It is a big change but when I say it’s all about me that is just the sadness. The excitement and celebration is all about her.

Missy has conquered this primary school thing. She has had to adapt to a noisier, busier setting every Friday and work in a different way. The girl has friends. She has learnt…and she has taught. Last Thursday she popped on¬†the dress she chose and proudly joined her graduating class…just as she should. (I was the one harbouring wads of tissues!) Tomorrow is her final day. She will have her bear signed and join her friends for final assembly. (I will again be the one with the tissues.)

To you my gorgeous kid….the next stage of life now unfurls itself at your feet.¬†Make the most of every opportunity. Take chances. Shine your light. Be brave. And if you could turn back every now and then to pass me a tissue I’d be ever so grateful. ¬†Go and enjoy. {{sniff}}

I dance

The girl doesn’t have much control over her life. Many choices, particularly medical ones, have necessitous outcomes. So while she always has things explained to her and has the opportunity for input she can’t always have the final say. I aim to offer her communication book during any appointment. This is both to give her the chance¬†to comment¬†and to remind medicos that her voice is important. At last weeks pre-botox appointment I did just that. My girl grinned as she navigated her book to say her piece. Her words? “I dance.”

Tears welled as I looked at the proud, determined kid before me. Dance classes have become more important to her than I could have anticipated.¬†They are¬†fun…and so much more. She is motivated to make her body work. To open scrunched hands. To lift uncooperative arms. To coordinate moving her legs in her wheelchair as instructed by her teacher. But, clearly, she wants more.

The girl can see that Botox treatment gives her a chance to improve her movement. She recognises that the medicine that will make her arms and legs less stiff can do more than enable her to be dressed more easily or assist with other aims we have for her. It can help her achieve her own goals. It can help her to dance.

 

 

 

 

 

This seems a fitting quote for our determined girl……….

‚ÄúLife isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.‚ÄĚ
‚Äē Vivian Greene

Grin and we might be able to bear it!

Accessibility is important in literally being able to get to school. But it isn’t everything. Access can be tweaked and small steps ramped if the school is¬†willing. That is the key…being willing and accepting of a kid who does things a little differently. Last week we went on a somewhat scary tour of a mainstream high school.¬†We listened to the principal and saw the facilities. We appreciated the ramps but were most impressed by the smiles. Smiles from teenaged students!

I now live with two teenagers and know they sometimes get a bad rap but they are not known for their cheerfulness. And the sunny looks happened not once but several times! In a world where my girl still has people stop in their tracks and stare, I was pleasantly stunned. As we had arrived the reality of transitioning to a whole new school hit hard. I was tempted to get back in the car before even trying. I know my girl so well but it takes a lot of time to teach all of her intricacies to others. And secondary schools can be prickly places for the most confident and able kid.

To succeed at school one needs to be able to communicate. Learning how missy talks takes some time and effort. And, of course, recognising a smart, funny person with a lot to say. Seeing a young  lady not just a wheelchair. In class time much of this will be the responsibility of an aide. But peers are so important to time at school. And these students filled me with hope.  For me, last week (and often) it all begins with a smile.

Change is in the air

The house¬†is so very quiet. It happens every¬†time¬†they head back to¬†school. But this year feels a little different. This year they have both moved up the ladder. The boy is now in VCE with only two years of school left…eeek! And the girl….she is currently enjoying (I hope) her first day of senior school….s e n¬†i o r. Being at two schools with slightly different criteria tomorrow¬†she has¬†her first day of Grade 6…her final year of Primary school. A year of endings and beginnings at the same time.

Many families are¬†tackling the push and pull of change this week. As children¬†begin primary or high school our babies suddenly look like giants¬†. There will be tears and smiles and lots of sighing…and that’s just the parents. If Missy is anything to go by the kids will adjust and embrace their new challenges a little faster than mum and dad. Having said that yesterday my girl was nervous. Her senior campus is on the same¬†site as her old primary¬†but expectations and some of the people will be new. ¬†After a few chats she downgraded her apprehension from “frightened” to “a bit worried”. So is was with¬†trepidation that I put her on the bus this morning. She was wearing a little smile which I hope stayed and grew wider as she saw her friends.

Change is not my¬†thing. So I have been (am) struggling ¬†with newness of this school year. But it is more than that. For a kid like Missy the future¬†after school is less what will she chose to do and more what will she be able to access. Will she be able to access further study if she wishes? Will she be able to engage in meaningful ¬†interaction with her community? Will she be able to work? Who knows. So today is a big step closer to that uncertainty. For now I will try to remain hopeful….and live in the present. To all families heading into new stages this week…all the best of¬†luck. May your children find their feet quickly and may you have a stash of good wine and/or chocolate¬†close by.

A big day

Kids grow up…that’s what they are supposed to do…if you are very lucky. I have friends whose angels couldn’t stay. Seeing how hard the loss of a child hits I mostly feel privileged to watch my children grow. I say mostly because there are still days like today. Days when I would like to slow time a little. But maybe these days are another reminder to appreciate the little moments.

Today is big. Or should I say she is big, and getting bigger. The girl attends two schools. One a mainstream and one in the special setting. Today she graduates from primary at one school. Next year she will be in senior school. S E N I O R.  She is so excited about the ceremony today but, as you may be able to tell, I am having a little trouble getting my head around it. It is often the way.

On my way to school shortly I will try to embrace the change ahead with a fortifying coffee in hand…and maybe some rescue remedy. I am aiming low. My goal is to not ugly cry. A few tears that can be wiped in a lady-like manner with a lace hanky would be fine. I am hopeful I can simply smile and enjoy her fun. So hopeful that I am wearing mascara! But those who know me well would suggest I grab a box of tissues and stop kidding myself!

Anyway….back to the kid. She is a delight. She is sweet and funny. She is so very smart. She is forgiving and understanding. She has a great sense of adventure. So for all of these qualities and more she will rock it today. And I shall be there to cheer her on tissues in hand. Go get ’em kid…big school and more adventures await!

Star

On Friday she won an award. Not a token for being the kid in the chair but a well deserved and appropriate recognition of her perseverance. It is one of the things she does best…persevering…and one of the things she has had to pull out frequently this year. Third term consisted of illness, hospital, home and very little school for her. So to receive a “Bounce Back” award was ace.

The award says “For her terrific determination and persistence to complete her work after returning to school. We missed you K and love having you back in the classroom with such a positive attitude. Great work!”. Fabulous! And this follows a big day last¬†week when the kid received a nomination. A fellow student nominated her to be school captain next year. S c h o o l C a p t a i n! That’s huge for any kid¬†especially for one who is non verbal. So this week she delivered a speech to her grade 5/6 cohort. She is enormously proud and wrote a speech about her qualities and why she loves her school that was stunning in its maturity. She delivered it using her voice output device apparently¬†to a round of applause.

I was there at assembly on award¬†Friday ready to snap away when a fellow parent asked if I brought tissues. I didn’t expect tears, just smiles. And smile I did as her name was announced and her aide helped her to the stage. Missy was so very proud. To make the morning even brighter her prep buddy received an award too. Two gorgeous girls who both have to work that bit harder to achieve. Both acknowledged¬† for their contribution to their school.

My¬†kid beamed as she wheeled back to her spot. I kept smiling and taking photos . Then it happened. The simplest thing. The Grade 5’s and 6’s all high fived her as she went past. Oh my. These kids are so accepting and awesome. Can someone please pass me a tissue? I think I have something in my eye.

We are here!

CP Awareness Day has rolled around again…dodgy pun intended. The campaign this year has centred around staking your place on a map. To virtually shout loud and proud…” I /someone I care about has CP and this is my/our story”. I meant to join in…I really did. But life has been extra busy here. And I guess that is the point.

To our family Missy is many things before she is a diagnosis. She is a smart kid, an adoring sister, a loving daughter, a caring friend. She is patient and clever and forgiving¬†and funny and…did I mention patient? She has been sick. For¬†many weeks¬†now. Cerebral palsy may not define her but it does have an effect on many aspects of her life. Her health is one of them. So, this year, this day finds us on the upswing of a very trying time with very little energy to wax lyrical about her story, what CP means to us or the changes we would like to see.

Suffice to say…I love this kid. She has extraordinary strength and teaches me about my own every day. What does World CP Awareness¬†Day mean to you?