Big boy…little mamma

I am now the parent of an adult. Well I have been for a while but when said adult was still at school I could dance to the tune of denial. Now, the music has stopped. He has finished exams and I am left with dancing legs twitching wondering what now?

The boy/man is doing exactly what he is supposed to. Growing and learning to become increasingly independent. As a parent it’s a challenge to keep a little bridge over that independence. The clingy mamma in me would still like to have a firmer grip!

It’s tricky to take a step back for the hard stuff. He takes a more relaxed approach to exams than I do¬† so watching from the sidelines has been frustrating…for both of us. I rescinded on my “no nagging” deal this year and have squeezed much poking, prodding, reminding and encouraging (read…”why can’t you just do it my way” ūüėČ ) in the last month. The replies of “uh huh” and “I know” and the like had me burst forth with “but I have wisdom” (for full effect read this in the voice of Tania from Muriel’s Wedding…I’m beautiful”!! )

The “wisdom” I think I have is trying to take half a step back. He has to do this his way (I guess). So I fed him all the brain food (Eggs, blueberries, bananas and walnuts oh my…not together!), wished lots of luck for exams and let him be him. He’s the only person who can and he’s doing a fine job of it. The big world awaits my boy…go embrace it.

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Dumb

Missy had a speech therapist in her early intervention setting, at least I assume she did…I can’t actually picture a face or recall a name. The focus then was mainly her physical abilities and limitations and accessing equipment. She did have a very basic eye gaze board with a peep hole and two choices displayed. By the time she arrived at school that had progressed to four choices! Without a reliable nod or shake we¬†interpreted her smiles to confirm what she was saying.

As a parent {and a highly strung one at that!} leaving the comfort of early intervention for school was a terrifying prospect. The school staff were familiar with the wide-eyed terror of newbies and were gentle. Two of the gentlest who cemented my choice of school were her teacher…and her speech therapist. In early intervention the physiotherapists had been my go to, her key worker and our safety net. This seemingly new breed of therapist presented¬† a simple Pragmatic Organisation Dynamic Display {{PODD}} book and my girls world changed.

I learnt from gentle-speech-who-gave-my-child-a-voice, let’s call her Miss Honey, to assume competence. If I thought she reacted…she did.¬†If I thought I saw a choice made…I did. Previously I would have seen myself as my daughters biggest fan and greatest advocate but within weeks Miss Honey was reporting nods when I had only ever seen smiles. And then my kid exploded in a sea of language and expression. Choice is so important and had been our primary concern to this point. I thought I knew her¬† well so often filled in the gaps¬†but when my “she will never communicate, learn or interact with you” child started to say the unexpected it was a revelation. Her personality began to fully reveal itself and it was a sight to behold.

The aspect of my child’s disability that makes me most sad has nothing to do with her but rather people’s perception of her. Too often people assume having a complex communication disorder means¬†she has nothing to say. That is simply not true. The only thing that was lacking was a reliable and suitable way to say it! As my daughter developed her proficiency with her PODD she showed us her sense of humour. She revealed her observations¬†of life…and reminded us she is¬†always listening…a l w a y s!

Yourdictionary.com defines dumb…”The definition of dumb is unable to speak or someone or something that appears stupid”. Unfortunately many people assume “unable to speak” suggests someone is “stupid”. My pleasure and mission in life is to show those people they are wrong. Thanks to the Miss Honey speechys in our world and a super determined girl we are well on the way.

The Last First

Do you remember lolling about on long summer days as a kid? You felt like they would last forever. And waiting for your birthday was a torturous countdown of weeks, days then hours. Gran, or some other “oldie”, would remind you that life goes by so quickly but it didn’t ever feel like it would. Then. When life was leisurely. Yesterday I blinked and today my son starts year twelve.

He has already turned eighteen which was tricky to get my head around but this feels even bigger. Once he finishes school it will be different…the end of an era. It’s weird isn’t it? My mum brain {or maybe heart} is clinging to a baby who has been grown for many years. The young man in his place is growing more independent just as he should. But…sigh.

I watched him walk to the station on his last first day feeling proud and a bit sad. Living in this family with the girly for his sister is…different. He has had to deal with lots if ups and downs so is a bit more worldly than his age suggests. I think he is¬†growing beautifully. He is a caring friend. He is witty and funny. He is terrific at reaching things on high shelves! And he has a sister who likes nothing better than to gaze at him adoringly. The timer on his childhood has buzzed {l o u d l y} and will continue to emit crazy odd beeps on days such as this but I think he is ready…even if his mum is not.

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}}

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.

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.

Team-work

A diagnosis of severe cerebral palsy in¬† a child can crush “normal” expectations. Will she drive? Will she have kids?¬†Will she ever sing or dance? Will she read?¬†Will she play sport? Missy may be reading but these questions mainly go unexpressed…and unanswered. Until today. An answer came today.

Most of her education and therapy¬†is at a specialised school. But one day a week she attends her local school with the kids from her kinder. She loves it. And she has a dynamite team working with her. Staff who don’t ask if…but how. So today she played T ball…in a team…with her class mates…against other schools…like most kids do. Except she’s not most kids. And her fine motor skills required for sport are very limited. Her determination though¬†is boundless and matched by that of team both on and off the field.

It was freezing on that playing field this morning but her face shone above many layers of clothes. She wore her sports top, for the first time, with pride. And she played. She hit the ball (with a little help)¬†then a team mate ran for her…gladly. It was a pleasure to watch. She gazed at her glove while waiting for the ball to come near while fielding. She beamed.

Today none of the other questions mattered. Because she played in a team. And she was so happy about it.