From the edges of the spectrum | interviewing Shell

Let me introduce you to Shell and by default, her amazing family. Grab a cuppa, or a wine or whatever is your beverage of choice and settle in, because this post is a long one. I would usually edit an interview down, but Shell’s story is so… hard, yet so so inspiring, I just couldn’t do it and have instead posted it in full.

We have known Shell, Colin and their gorgeous daughter Olivia for some time. We met before their life turned upside down, ironically at a time when we all thought our lives were already upside down. Little did we all know how wrong we were.

(photo by From Genevieve photography – you can see some beautiful photos of Olivia that Genevieve took here)

 

1. Tell us a little about your family, in as many or as few words as you like. Who are you?

My husband Colin and I have been married for 8 years and our beautiful daughter Olivia  is 6 and a half and starting Prep this year. We are a very close family so I will also mention my sister Liesl (a.k.a Aunty Weez) and my mum and dad. All of us have supported each other through some difficult times of late, Colin and I feel very blessed to have had so much ongoing support.

2. What ‘label/s’ does your child/children have? And when were they diagnosed?

Where do I start!!?? In 2008 Olivia was diagnosed with “Anxiety”, and in August 2010 she was diagnosed with Aspergers Syndrome (I should note that this was diagnosed by a paediatrition who did not seek assistance from a speech therapist, psych or OT the way he was supposed to!)

In March 2011 she was diagnosed with an impacted bowel which led to a diagnosis of brain and spinal tumours in May 2011.

3. What prompted you to seek a diagnosis?

I apologise in advance, I can see this being quite lengthy!

Before her diagnosis of Aspergers, Olivia had a lot of anxiety issues, and in her first kinder year (2010) it started to become obvious that there was more going on. She was struggling socially and had poor concentration as well as a strange gait and poor fine and gross motor skills. There were many meltdowns, particularly in shopping centres and crowded/noisy places especially in places with fluorescent lighting.

By the time we got the diagnosis of Aspergers, we ourselves already thought she was on the spectrum.  The thing is, now that we know that she has a brain tumour and lots of fluid on the brain, it’s difficult to know if that is the cause of these issues or if she has Asperger’s as well.

In March she started having terrible pains in the stomach, screaming every single night and walking leaned over like a grandma. We took her to see 9 doctors over the next 2 months, including 3 trips to the Emergency department at our local hospital, and a very expensive paediatric gastro enterologist. We were constantly sent home and told it was just her “Aspergers” or her “anxiety”. The problem with having a child diagnosed on the spectrum is that it is very easy for doctor’s to blame a lot of other issues on it.

It was a terrible time, I was called neurotic more than once and I had a few tantrums in hospitals and doctors surgeries begging them to look harder, do some basic tests/scans. Eventually a GP was smart enough to do an x ray and found an impacted bowel, which was hard for us to understand since she had been going to the toilet daily. The GP recommended a bowel cleanse but the local hospital said they wouldn’t do that on a 5 year old and just prescribed more laxatives. It wasn’t working, so we had to keep on pushing until we ended up back at the Paed who diagnosed her with Aspergers. Finally with some pushing from us, he organised the bowel cleanse, but he was more concerned about her terrible gait and he organised a bone scan. He said he was doing it to see if she had a bone infection. It came back clear and he told us all was fine, and to just go and see a chiropractor!

After Olivia’s bowel cleanse, she was in less pain but we knew she was still not right. Her gait didn’t improve so we went back 3 weeks later and I asked him to keep looking, do more tests. We knew there was something very wrong. As parents, you just know! The paed said to me “She is constipated, that’s all there is to it!” Basically, what he was saying was go away, there’s nothing more I’m willing to do!

We saw a chiro and after a few sessions he told us to go back and see a doctor and ask them to organise some scans. I asked him if he thought it was neurological, and he said yes. I think there were some thoughts in my head then about tumours, but my heart refused to believe it, I blocked it out. We went back to the GP who had been smart enough to diagnose her impacted bowel, and she sent us straight to a decent hospital for an MRI. It was my birthday, and it is one I will never forget. Finally, they did an MRI on her brain and spine.

Her brain and spine are extremely abnormal and 7 consultants from neurology and neuro surgery had apparently stood dumbfounded, staring at her scans. A neurologist sat us down and told us the terrible news that she “might” have cancer or she “might” have a very rare and dangerous infection, but basically at that point they didn’t have a clue what they were dealing with, the only thing they knew was that it was very serious. I asked her if my baby was going to die. I wanted her to say, “No, it’s not that serious.” Instead, she said simply, “I don’t know.” Not what any parent wants to hear.

The next day they drained fluid from her brain for testing and to reduce pressure. The fluid showed up nothing, and it was looking less and less likely that we were dealing with an infection. 2 days later they did a very scary spinal surgery to find out what was going on and do what they could to fix it.

The Neuro Surgeon came out of the 5 hour surgery and he told us he had removed “a lot of abnormal tissue” but couldn’t get it all and that we would be dealing with “other therapies” not just surgery. I remember asking him point blank if he meant oncology. He said yes. I knew then. It took about a week after that for them to work out that it was “low grade” and “slow growing”. That week of waiting was the worst week of our lives, because we simply didn’t know how bad it was and if it was even treatable. It took another 4 weeks after that to get an actual diagnosis. Our precious girl was a medical mystery, and still is! It was a big test of patience and faith. We spent those weeks focusing on helping our girl learn to walk again. The surgery had left her without the use of one of her legs. I know I am biased but I really have to tell you that our Miss Olivia is not only one of the bravest and amazing kids on the planet, she’s also one of the most determined!

The most amazing thing happened after surgery. Olivia was able to articulate things she never could before. She could tell us when she was in pain, she never could before. It was like the real Olivia was emerging. We used to see glimmers of her between her anxiety and concentration issues, but now she was coming out. I remember taking her to the playroom in her wheelchair 2 weeks after surgery, and she took all the ninja turtles from one end of the playroom over to the big dolls house. She then proceeded to create a “party” with them. One was called poppa, one was me, one was her, one was her friend Sophie and so it went on. I watched, baffled, as she explained that they all had gifts for the birthday girl, explaining in detail what these imaginary gifts were. There were conversations between party guests, cake, sharing, singing….where was my girl that struggled with imagination?? Olivia always had a good vocab, like many aspie’s, but she always struggled to express herself and to use her imagination. I’ll never forget one of the other mums in the playroom say to me, “Your daughter has an amazing imagination!” I’m pretty sure I cried right then!

So, daily intensive physio and occupational therapy became part of our routine living in the hospital, and slowly she learned to walk again. Her concentration and fine motor skills were so much improved it was scary! 7 weeks after we went in for that MRI, we left with Olivia walking, wobbly but walking. She started chemotherapy for her Pilocytic astrocytoma. Yes, it took about 4 weeks to diagnose it, and about another 4 weeks for me to learn to say it, and a lot longer to learn to spell it!! 9 months on, it amazes me sometimes how many medical words and expressions roll off my tongue! I think I’m ready for my medical degree now!

4. What traits of their diagnosis has the biggest impact on their life?

Concentration, staying on task and fine motor activities

5. What therapy or strategy do you think has made the biggest impact on their life?

After surgery, physio therapy was most important to help her learn to walk again. Having said that, OT is vital as we start school. Fine motor issues cause her much frustration.

6. What therapy or strategy has made the biggest difference in YOUR life?

Physio. It was very hard to watch her in a wheelchair or struggling using a walking frame. Thankfully those days are over now.

7. If you could do it all again, is there anything you wouldn’t do, or would do differently?

Wow, so much!! My biggest regret is that I didn’t question our paeditrition on why he was diagnosing Olivia with Asperger’s straight away with no input from a speechie, OT or Psych. I’ve since learnt that he was not meant to do this, and perhaps if he had gone through the right channels we may have had this figured out long ago. We won’t be seeing him again!

8. Is there a particular resource, book, website or blog that you recommend to other parents?

From a spectrum perspective, the movie about Temple Grandin ( I think it’s just called Temple Grandin) really helped us and other family members have a better understanding of Autism.

It’s easy for people to think straight away of the movie Rainman or a child stimming in foetal position when you mention autism. I think the movie humanised Autism and showed it as the complicated condition that it is.

Most importantly though, it shows how brilliant the autistic mind can be. Temple is such an amazing woman. There’s so much more to our kids than most people see, the world is their oyster!

9. If you would like people to know one thing about your child, what would it be?

Whether she is actually on the spectrum or not, and whether her cancer disappears completely or not, she is an extraordinary person who inspires and amazes us everyday.

10. Where to from here?

Our journey continues, we have 4 more months of chemotherapy and the tumours have shrunk a little bit. We’ve been told they will not shrink more and oncologists are just hoping for no tumour growth. We on the other hand, are goaling for more tumour shrinkage!!

I’ve learnt that doctors don’t actually know everything (and god knows, in our case we had quite a few in the lead up to her diagnosis THAT DON’T KNOW ANYTHING!).

We have made many other changes too, including a pretty serious diet overhaul, no dairy and gluten (although we’d already done that before diagnosis) no additives, very limited sugar, and no fluoride! And as much fresh organic food as we can. I research more and more about alternative  cancer treatments everyday and will not stop until my baby girl is cancer free. Olivia has coped extremely well with all these changes….did I mention she’s pretty awesome!

Her concentration is much improved but still poor, as are her fine and gross motor skills. There are still “autistic traits” and issues that make life difficult for her, and Prep will be a huge year for her.

I’ve asked the question many times, “Does she have Asperger’s?” It depends who I ask! I remember sitting with 2 of the oncology team telling them how different she was after surgery and they said they have seen quite a few children who were diagnosed on the spectrum who turned out to have brain tumours, not autism.

Having said that, her neurologist says she still has enough traits to perhaps still be on the spectrum. They won’t test her for a while yet, and although in my heart I don’t believe she is on the spectrum,  I have to make peace with the fact that it really doesn’t matter at this point. I have to let it go and focus on my girl. The social issues and anxiety are better, but her concentration is still poor, her motor skills still an issue and she needs constant redirection to keep on task. Those issues are there whether she is diagnosed with Asperger’s or not. Once again, for me it is yet another test in patience and faith.

I have learnt through this difficult time, that a mother’s instinct is a very powerful thing. People in the medical field need to trust parents, because we always know when there is something wrong. We may not know exactly what it is, but that part isn’t our job!

My advice to anyone who thinks there is something not quite right about their child….keep on pushing and find a doctor who will listen. It scares me that if we had listened to those first 9 doctor’s, Colin and I could still be sitting by Olivia’s bed at night watching her in pain and saying, “Damn, it’s just her Asperger’s causing this!”

We look forward to getting Olivia settled into Prep this year, although I myself am petrified! My baby is growing up! But did I mention that she’s awesome……?

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Comments

  1. She is amazing.

    You are right, she is also an inspiration, grown ups have a lot to learn from such fabulous little people.

    Wishing you all the best in her recovery.

  2. Wow. What a story. I’m in awe of your and Olivia’s strength. Amazing. I wish you all the best on your path to Olivia’s health.

    While I wish this wasn’t true, I hear it all the time from so many people – “I have learnt through this difficult time, that a mother’s instinct is a very powerful thing. People in the medical field need to trust parents, because we always know when there is something wrong. We may not know exactly what it is, but that part isn’t our job!”

    WHY WHY WHY do we revere them so much in our society when so often they get it wrong? And my gawd, I don’t think there’s anything more powerful than a mother’s instinct. You are one wonderful woman to keep pushing.

  3. Hi Shell,
    Thank you so much for sharing the beauty of your Olivia with us. She sounds like a remarkable little girl surrounded by a loving and wonderful family! I have learned to not accept no for an answer when my instincts scream otherwise in medical circumstances. I HATE that we all have to become experts and advocates for our own medical circumstances. It’s such a steep learning curve that we should never have to climb. I hope that Olivia’s health continues to improve. I wish you every possible bit of health and happiness. Xxx

  4. Thank you so much for sharing your story. Your journey is a truly inspirational one. May you find the strength and wisdom in youself to guide you through. I will never forget this story, it has touched me in many ways, one of which is to… remember always to be thankful for the wonderful things I have.

  5. Wow. Thanks for sharing, that is a truly inspiring mum!

  6. Thank you everyone for your kind words. It means a lot to us. We are honoured to have been able to tell Olivia’s story on this fabulous blog, and hope that it encourages even just one person to listen to their instincts. Thank you Renee xx

  7. Astonishing story- amazing family. Sounds like this girl will go far! What a great Mum she has, and though I wish your situation was far less painful, I’m so very very glad you found some answers and got onto the right path to improve Olivia’s life. I wish you all the best with Olivia’s health and the school start.

  8. Incredible. Olivia is an inspiration & so is her mum & so is this story. I agree 100% that mothers should listen to their instincts & always seek another diagnosis. I have heard too many stories where a child has a condition that was almost missed by a dismissive doctor but found because of a so called “pushy” mother asking for tests. Much love & strength to this wonderful family.
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  1. […] wrote about her a few months ago (here). It’s not a happy story, other than very important the fact that Liv is doing really well and […]

  2. […] time I wrote a post on this wonderful blog, my daughter Olivia was about to start Prep and was undergoing chemotherapy […]

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