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.

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……….

“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.”
Vivian Greene

A numbers game

Numbers are my thing. I am comfortable with calculus and positively perky about Pythagoras. But sometimes numbers work against me. There are a bunch of “non-fun” figures I can reel off from recent experience. It has been 3 months now since my girl has been well. This included 4 visits to the emergency department and 2 hospital admissions. As well as 4 courses of antibiotics and twice daily finger prick blood tests. My missy endured 7 X-rays, 3 ultrasounds, a PEGogram and a full body bone scan coordinated by 3 medical teams. Her last admission involved 31 nursing shifts. Nearly 1.5 litres of fluid was drained from around her lung by a surgically inserted tube. Yes just 1 lung was affected…the other was doing all of the work keeping her breathing. She’s only 12 years old but has lost at least 4 kilos in that time…and I think I found them! Her last stay in hospital was 11 days. That’s a long time. The kid has not had a full day of school since the 17th of August and had missed many other days of school in the weeks prior to that. But, even for me, not everything is measureable.

No number can come close to capturing the worry…the fear…the stress…the exhaustion. Nor the admiration. For adversity tests our strength and despite, or more likely in spite of, everything that was thrown her way….the kid came out on top. She is still tired and battling medication side effects but she is at school today! I applaud her courage and marvel at her forgiveness. The pain she endured and tests she cooperated with would floor most adults.  Being a tween, contributing to her own health care is more important than ever. This can be an enormous challenge for a non-verbal child. But she did so very well. In the early days of her second admission to hospital her plaintive “help” nearly broke my heart. Even then she consistently asked and answered questions not letting fatigue beat her. The cheeky sense of humour (that I think comes with her red hair!) snuck out from time to time too. When asked by a doctor if she needed anything her reply was “Yes, MY room”. Apparently she thought the nurses and I were asking too many questions about pain relief before removing her chest tube. Her repeated reply when asked for her thoughts…”Hurry up. Do it.”. Just Nike that thing hey kid…the bravest of the brave.

And now, after 8 straight weeks of home or hospital, I hope we have come out the other side. Have we come out unscathed? No. Hospital has left it’s scars on her…and us, her family. Added to her numbers could be the very small hours of sleep for me, or the huge number of kilometres driven to and from the city every day by A, or the number of days I felt like I was no longer mother to her brother, or the amount of tears shed while begging her to stay strong. It was just too close…she was too sick….she became a ghost of herself. The numbers that now have to build back up are her hours at school and some healthy weight gain. And the one figure that has always been and will remain the same is how much I love her and her brother…infinity.

Mum…no

My kids both amaze me. They are both compassionate, caring and smart people. The clever bits are more difficult for most people to see in our girl. Not talking {in the traditional sense} tends to make some folk miss her intelligence. But tonight it shone. She needed something and let us know loud and clear.

The bed time routine around here is involved and lengthy. There are a plethora of medications to measure and deliver. A book to read. The usual PJs on and toileting after transferring to her bed from her wheelchair. She then needs a drink of water through her PEG and air vented out. Tooth brushing…face washing….special cleaning of her sore chin and cream applied. By the time we say goodnight a marathon  has been run. But tonight she protested. Her bed side was raised and we were walking out but she said “Mum no!”.

Sometimes she can be reluctant for us to leave so I list the bedtime routine to reassure her that all has been done and it’s time to sleep. Tonight she listened, expectantly. Then I got to one medication and her eyes lit up. I had forgotten it. She knew and she wasn’t going to let us leave without getting her point across. I’m so proud. And so was she…with a little “I told you so” glint in her eye. The kid is a rock star!