Tag Archives | disability

Doing it ourselves

Sparky was 2 1/2 when I asked her physio therapist. “Of all the kids you know, whose Cerebral Palsy is the same severity as Sparky, how many ever walked?”

“Four” he said

He had been doing the job for thirty years. And considering how big case loads are, the odds were not good.

At that point we knew we had to take matters into our own hands. We dived onto the internet and  joined yahoo groups of parents all around the globe who have children with Cerebral Palsy. We quickly learned that dissatisfaction with mainstream therapy was widespread. We listened carefully to the words of parents of older children.

What have you learned?

What would you do differently?

Parents have worked this much out:

Always get a second opinion

No one knows or cares about your child as much as you.  Listen to the experts, but make your own decisions.

We climbed back into the driver’s seat of our child’s life.  We commenced Advanced Biomechanical Rehabilitiation, a wonderful new therapy that turns the traditional understanding of Cerebral Palsy on its head.

We commenced the therapy, throwing a lot of money on the training and travel required. Despite having three 2 year olds to care for, we worked on Sparky’s little body for three hours a day.

 

 

After just three months her body was demonstrably changed. Her core strength was improved and her chest was less collapsed and more solid.  Her breathing was deeper and she had gained weight.

Sparky’s therapists were ambivilant. We stopped asking their permission, and started telling them what we were doing, and inviting them to watch and learn. Eventually we cut ties with mainstream therapists altogether.

Physical therapy: we do it ourselves

Sparky can’t eat or drink with her mouth. She was fed formula through a tube. From the age of 18 months, Sparky experienced constant mucous secretions and usually vomited 4-8 times per day. She often vomited blood as her throat was raw, and always screamed in pain.  Sparky had several respiratory infections each winter, often requiring hopitalisation, IV antibiotics and oxygen. She did not gain weight. Once she didn’t smile for 9 days straight. Not sure that we were able to either.

We had to rip up the vomit stained carpet. And we used towels, everywhere we went. Everything stank of the fake vanilla flavoured formula.

I asked the dietician if we could feed her real food instead of formula. She said

“You couldn’t possibly give her the right balance of nutrients”

Well, we do it for ourselves and our other children just fine.

I began reading more about nutrition and brain development and began to wonder whether formula was meeting all Sparky’s needs. We approached a total of six professionals before finding someone who agreed that maybe formula wasn’t good enough.

A full range of tests done revealed she was severely malnourished in several key areas, including nutrients crucial for brain development.

I began to realise that formula was only ever designed to sustain life; to keep people alive when in comas. It was never designed for children to THRIVE on, and certainly not to help their brains to CATCH UP! Sparky’s brain needed all the help it could get.  I decided to never give her another drop of formula.

I bought a blender and began! I started feeding Sparky food, introducing foods one a at time, just like the process for a 6 month old baby. So I began with pumpkin and carrot, slowly adding rice, oats, fruit and veg and then meat, eggs fish, yoghurt and oils.

Within 2 days, Sparky stopped having all that mucous in her throat. Within 3 days she stopped vomiting.

I kicked myself so hard for putting her through two years of vomiting and pain, because I was too scared to “defy the experts.” I wish I had started earlier.

 

Healthy diet: we do it ourselves

What’s next? What area of Sparky’s life do we need to reclaim from experts who are at best ambivilant and at worst incompetant and discrimanatory? (With a few notable exceptions, for whom we are are very grateful)

I’m thinking…… education

After a number of frustrating years with institutionalised schooling options for Sparky, we have decided to do it ourselves.  What will homeschooling look like for us? A whole new world of challenges and opportunities.

We are excited, prepared as always for hard work and on the look out for communities of like-minded families. Know anyone?

What do you find best to do yourself?

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Tourists in our own town- for practice!

We set ourselves a task: walk 5 km, check out some local attractions, and try out some gear. That shouldn’t be too hard! We tested;

  • Keens sandals
  • Ergo baby back pack
  • Children’s backpacks
  • Using the ipod for audio stories
  • A homemade take-anywhere mat to lie on

So, we started with a hike up Wireless Hill.  Its spring and the wildflowers are out.  So are the creepy crawlies.

Bobtail lizards, I DO NOT like!

 

There was a “liberty wheelchair” swing. I know some people love them, but I just can’t get over the rigmarole of going to the office to get the key, and the over-the-top safety instructions. Not to mention the separate fenced area. It makes an every day childhood activity like going on the swings at the park into yet another segregated, regulated activity for kids who use wheelchairs. And really, parents of kids with disabilities don’t need yellow danger signs to tell them to ensure their child is safe; that’s what we do, all day, everyday. Having said that, a liberty swing is the only swing some people can use, so bring them on!

 

 

The children walking leaves room for improvement, but that’s alright; there will be plenty of practice!  We also had some ipod altercations. We had a picnic lunch and tried out our ‘blue mat’ . I had sewn a water proof backed lightweight mat for Sparky and Baby Boy to lie on. A person should never sit in a wheelchair in the same position for more than one hour. The blue mat worked a treat, and will enable Sparky to have a stretch and a wiggle when ever we are out about about, even if the ground is wet or dirty.

 

Across the park we saw acrobats training on a high swing. I have lived here most of my life and never knew there was a circus training centre! Its amazing how much more you see by going on foot.

 

We finished our walk and drove to Fremantle to the camping shop to try on women’s packs. They had one type available, not front loading, and without a daypack. Almost as useless as the guy working in the shop.

Next, Fremantle markets. Pre-children, this was our regular haunt. We love the buskers in the bar, the fruit and veg markets and the $10 massages.

Everyone was hungry, so we had a second lunch. The dodgy luke-warm food hall curries were a bad choice. The fresh cooked rotis were great. Note to self; always buy fresh cooked!  It must be a hangover from our Singapore trips that the children think whenever you eat at foodhalls, you should drink soy milk.

 

So,
Successes: the ergo baby carrier is an absolute winner. Baby Boy loved it, he slept happily or looked around, and we both wore it on our fronts and our backs without any discomfort.
Our Keens sandals are comfy and good to walk in. I got blisters, but that’s the fault of my ridiculous feet.
The blue mat worked fine.
The ipod was not really necessary, children don’t actually need audio books while walking, and it turned out to be more of a hassle. And it might help if I actually learned how to order my audio files so we don’t get songs and random chapters all mixed up.
Failures
The children’s backpacks were just their school bags. They are hot and uncomfortable.  I’m really glad the children have carried then all day.  That’s because the great new super deluxe deuter fox 30 packs are still under the bed, being earnt, one job at a time. Aaaah, the tough lesson of delayed gratification.

Sparky’s  wheelchair was hot, heavy and uncomfortable. But we knew that, which is why we are building a new one.

Overall, a good day. Have you ever discovered something new by playing tourist in your own town?  Have you ever wished you gave a piece of gear a practice run?
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