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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10 Responses to Doing it ourselves

  1. John & Brenda December 27, 2011 at 2:28 pm #

    What a fantastic story! It just goes to show that you cannot rely soley on a single “expert’s” opinion. Let’s hope you get some useful feedback that can assist you in caring for Sparky. What a kid!

  2. Debs Spann December 30, 2011 at 6:26 pm #

    Hello gorgeous people!!!!

    What a thoughtful post it was an inspirational read. I can relate in some sense to what you’ve shared….When Cary and I got married and began blending our family we were discouraged from getting our hopes up that our family would be whole and loving and normal. One person even went as far to say that the best we could hope for was a “scrambled” family…totally disjointed and a second rate lot really…
    In the first couple of years of blending I bought books and sought advice from “experts” and we had a very rough ride. Then Cary and I started to think that perhaps we knew what was best for our family…and we knew what we want our family to be…and that God has shown us HIs love and blessings already in bringing us together as a family and as far as I am aware…God doesn’t do second rate!
    So we started making our own rules about our blended family…living and loving in faith and forgiveness (when we get it wrong :) )and today we have a very strong, cohesive family that so many people told us wasn’t possible.

    So Jill and Chris I loved your post and we are sending you and all the ChaChas our love and prayers.

    Debs, Cary, Roms and Will

    xxxx

  3. Jennifer Pearce January 8, 2012 at 11:19 pm #

    I really loved this post Jill. You have such an amazing family. I feel so lucky to have met you all and for the chance to become better acquainted while we were in Penang together. I am finding it’s almost always better to do what makes sense to you, instead of relying on others to dictate what to do and how to do it. I agree that it can be hard to see our way out of that trap though, even when it seems so obvious in hindsight. However, it really is very difficult to see while we are in the thick of it. So, congratulations to you and your family for what you have discovered and the life-changing transformations that have resulted, especially for that sweet and smiley little Sparky of yours. :)

  4. Nyree Summerfield January 24, 2012 at 10:04 pm #

    An inspiration to say in the least . Well done on releasing the mother lion in you and having the courage to find what is best for your family . Incredible post . Truly humbling and honest thank you for sharing . Our son Elijah has recently being diagnosed with ASD and discovering the world of therapists good and bad . I take great hope in hearing stories like these because it makes me more determined to follow my mothers instinct to make life not just tolerable for Elijah but incredible

    • Jill January 28, 2012 at 7:52 pm #

      Hi Nyree
      I just read your blog last week and have been meaning to write to you.
      thanks for your encouragement. I hope I’m being a mother lion, not just a mother ranty person.
      I think finding whats best for our kids is so complicated, and it changes, and its different for each child. But so far, traveling as a family has served to remove some sources of trouble entirely, and put a few others into perspective.

  5. Heather Simmons January 30, 2012 at 10:39 pm #

    HI Jill
    When you get back to Perth…if you come back to Perth…you might look up a group called Vela MIcroboards Australia…they are a bunch of families supporting each other as they try to support their child in a way that makes sense for them…
    You might already be in touch with them because I found my way to you through their site…sorry if I’m giving you old info…
    So good to read your story…
    Heatherx

  6. Suzanne Clanton February 7, 2012 at 4:45 pm #

    Your courage, strength and relentless attitude to never give up brought tears to my eyes. If I can ever be an assistant/support with regards to education – please let me know.

  7. Sharyn Speijers February 8, 2012 at 6:31 pm #

    You guys are absolutely amazing and it just proves that “medical people” are not always right. My Matilda was born at 23 and a half weeks gestation, and we were told at the time that she probably wouldnt survive and if she did she would have major disabilities. She has proved them all wrong by attending main stream school and so far she just has a few developmental issues that we are trying to resolve.
    I believe you do need to be your child’s voice, especially in hospital. I had a fight with a Dr once, who was going to medicate Matilda with something stronger than she needed. I alerted a nurse, and she actually was given the medicine, but thankfully she threw it up, and the medication was checked by someone, and proved I was right.
    You are such an inspiration to me and such great parents who go to great lengths to give your child a chance at a happier, less painful life. Keep going and I will remember you all in my prayers xxoo

  8. Vanessa November 20, 2012 at 7:23 pm #

    Hi! I just found your blog the other day through another blogger, and I can’t stop reading about your family’s inspiring outlook on the FUN that can be had in life… no matter what! I’m currently traveling with my husband and would love to keep that possibility open whenever we have children.
    Great blog post about questioning the “experts.” Those people are just humans too; they have their own agendas (making money, keeping their job, etc), so it’s great to do your own research and test the professionals. So nice to see parents who genuinely want what is best for the whole family! 😀
    Vanessa recently posted..Halloween Market Day Craziness 2012My Profile

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