Pink Tigers, Anxiety and ASD

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I love to celebrate my daughter’s life.  My facebook feed is a chock full of pictures of my beautiful girl grinning away with delight, exploring the world and enjoying her life.  And I am beyond grateful that we have so many wonderful, wonderful times together.  Times during which she has not a care in the world, and all is as it should be.

Seeing this flood of happy images, one would probably find it hard to imagine that my beautiful daughter suffers from clinically diagnosed anxiety.  It is estimated that up to 80% of individuals with Aspergers have anxiety (as do many children with Kabuki Syndrome), so Sophie is certainly not alone.

It is important to remember that people with autism have differences related to their diagnosis that increase their chances of having anxiety.  Differences with how they see, hear and feel things in the world (sensory processing) can lead to exaggerated stress responses.  Difficulties with understanding social cues and navigating social interactions can also lead to exaggerated stress responses.  And it has been shown that some people with autism actually have an enlarged amygdala.  The amygdala is the part of the brain that initiates the fight or flight response – and the amygdala can’t distinguish between a real threat and a perceived threat.  So there are physiological differences in people with autism that are also linked to heightened anxiety. Add all of these things together, and your chances of having anxiety are significantly higher if you have autism.

Unfortunately, there can be a great deal of misconception around what anxiety actually looks like, especially in children who are autistic.  Sometimes we see behaviours and attribute them to other things.  And if you don’t recognize my daughter’s anxiety for what it is, you may be tempted to judge her.  So today I want to share a little about how Sophie’s anxiety presents – not because I want the world to see her as “broken”, but because it is only with knowledge that understanding can come.  And my little girl has been misunderstood too many times.

When my daughter sits in the library by herself every lunch hour – it is not because she is just “the quite kid”, or a kid who isn’t interested in playing with others.  And it is not because she doesn’t enjoy outdoor play, or physical play.  Sophie is a gregarious little girl.  She loves people.  She LOVES the play equipment. She BEGS me to stay after school so she can climb the ladders and swing on the ropes. She WANTS friends.  She is sitting in the library by herself because her anxiety about what to do in the playground and how to manage all of the social interactions and expectations is overwhelming.  What if she asks someone to play and they say no?  What then?  What if no one asks her to play?  What if someone suggests something that she doesn’t want to do?  What then what then what then?  It is easier for her to retreat to the library than to deal with the intricacies of poorly understood social rules, the fear of the unknown, and the fear of potential “failure”.

When my daughter bursts into hysterical tears after arriving at her Girl Guides Halloween disco and begs me not to leave, and starts gasping and rolling her eyes – it isn’t because she is afraid of the scary costumes.  She has in fact just spent hours selecting her own scary costume, excitedly repeating that she can’t wait to get to the disco, that she can’t WAIT!  NO – it wasn’t the costumes at all – it was the fact that she was afraid that the other kids wouldn’t like her dance moves.  And this fear of what others might think has crippled her, left her terrified, left her suddenly unwilling to participate in the event she has been looking forward to for days .

When my daughter is bossing your child around in the playground – it is not because she is being mean.  And it is not because she is an undisciplined, entitled brat who has been brought up badly.  It is because she is desperately trying to control the situation, channel the direction of play in a way that feels familiar to her – to avoid the unexpected and control her anxiety.

When my daughter bursts into hysterical shrieking when we decide to go to a new Thai restaurant for dinner, instead of going to the local steakhouse that we had briefly discussed – it isn’t because she is throwing a tantrum to get her own way.  It is because she had already planned in her mind how the evening would go.  She had already imagined herself sitting in the Kids’ club, doing some coloring in, and she had already picked out the meal she planned to eat.  She was feeling safe and comfortable, she felt as though she knew what to expect.  Now all of that has changed.   She doesn’t know what she is in for.  What if there is nothing she likes on the menu?  What if the lights are too bright, the noise too loud?   What if there are no activities for her to do?  What if what if what if?  The fear of the unexpected can be overwhelming for her at times.

Now sure, all kids have fears.  But anxiety is different to fear.  Anxiety can be crippling,  Anxiety can (and does) lead to social isolation.  And it doesn’t always look like what you think.  People with autism experience the world in a different way to most people, and that world can sometimes be difficult to understand.  There are times when even I, as Sophie’s mother, can’t figure out what has triggered her anxiety.  Sometimes I don’t know until months later, when she will whisper quietly to me about it as I lie next to her for songs at nighttime.  So I don’t expect everyone to be able to figure it out all the time.  All I am asking is to please be gentle with my daughter.  Don’t judge.  Don’t assume you know WHY she is acting in a certain way.  Just know that she needs to feel safe, and that she sometimes needs to be supported to fully engage with the world around her in the way she wants to.

So what does this have to do with pink tigers?  According to Deborah Lipsky (in the book From Anxiety to Meltdown)

“People with autism are like tigers.  A tiger’s natural environment where they are content doing what comes naturally and instinctively to them is the jungle.  You can put up a circus and train us to jump through hoops – for that is what is expected of tigers so that they fit in an environment not their own.  Still a tiger is a tiger, and has natural instincts that are best subdued or dormant for a while but can break forth at any time.  People shouldn’t be shocked when a wild animal such as a tiger suddenly and without warning attacks its trainer.  Children on the spectrum are expected through much intervention to adapt themselves into a foreign world that goes against their natural “nature”.  It is no surprise that tantrums, meltdowns, and bad behaviors “break forth” without any reason apparent to the non-autistic bystander.”

Sophie has had lots of intervention over the years to help her deal with her anxieties.  She has had occupational therapy, social skills classes, psychology appointments and of course lots of loving input here at home.  But the tiger can’t always be tamed.

And the tiger in my house is a pink one 😊

 

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My Daughter is not Broken – The System is

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The system, the system – ah, what a frustrating beast it can be.

Yesterday we had an appointment with an (unnamed, but well regarded) psych clinic.  The purpose of the appointment was to discuss Sophie’s test results, from a battery of tests designed to give us a comprehensive overview of her “neuropsychological function and cognitive profile”.  Just for the record – we do this testing purely for schooling purposes, so we can advocate for what Sophie needs within “the system”. No need for anyone to fret – I’m not going to put my daughter in a box based on her results 🙂

So yesterday we went for answers, and instead came back with a very big question.  So here is the question – how on earth is the school system supposed to cope with my daughter’s beautiful and unique differences (or anyone’s differences for that matter), if the psychologists who specialise in this field can’t deal with it?

After a long discussion about Sophie’s test results, we determined that the professionals involved in her testing couldn’t really justify or make much sense of the results themselves. According to the test results, Sophie has (apparently) dropped 35 percentiles (no, that is not a percentage, and it is not percentage points) in her results for the standard  NEPSY IQ test since she was last tested (18 months ago) . Her current test results show Sophie as scoring just below average for her overall IQ.  She was tested just 18 months ago, and at that time tested as high average.  Now I know for a fact she ain’t getting dumber.   And these tests are supposedly “valid and reliable”. So why the discrepancy?

To delve a little further, they got Sophie to complete a battery of standardised age-equivalent/ year level equivalent academic tests. And for many of those tests, Sophie scored well above what was expected.  Sophie has just finished Grade 1. For some of her academic test results, she scored at the Grade 6 level (equated to 11.9 years of age – Sophie is 7 years old).  And all of Sophie’s results were at the Grade 2 level  or above. So to clarify – all measures of her knowledge and skills in the academic context are measuring at a minimum of Grade 2 level, some at Grade 3, some at Grade 4, quite a few at Grade 5 and some at Grade 6 level.

The “experts” told us that Sophie’s performance was outstanding on all the academic measures, and that she should be getting all As and Bs.  they also told us that, given how well she performed on all the academic measures, there is no way her IQ score can be correct.  They informed us that they believe that Sophie’s test results were affected by her motivation on the day (apparently she was agitated, getting in and out of her chair. saying ‘I don’t know” and asking for breaks etc. throughout the testing). So they told me they think she may have ADHD.

They also told me they think Sophie may not have Asperger’s.  Let’s remember that Sophie has been formally diagnosed with Asperger’s by a psychiatrist, in conjunction with her occupational therapist and her speech therapist.  And that her Asperger’s diagnosis has been validated by many other health professionals over the years.   And,  to be honest, if we are going to use any labels with Sophie – Aspie  is one that well and truly fits.  We were told that they believe that Sophie is having problems with her peer relations not because she has Asperger’s, but because she is “so much smarter than them”.  And because she is “probably bored at school” and because she “probably wants to talk about things her peers don’t want to talk about”. Um, wait just a second…didn’t you just tell me her IQ was below average? Oh hang on – a year ago you told me her IQ was above average…. Oh yeah, even though she is below average she is actually way above average at school stuff?  I’m confused…

Now the “I’m too smart for my peers” theory is a nice little theory. Yep, that’s the problem. Um, maybe not. Or maybe a bit of both. Let’s just say that whether this current clinic thinks she has Asperger’s or not – Sophie’s social difficulties are not all because she is “too smart” (maybe some of them are – but not all 🙂 ) Sophie undoubtedly has deficits in recognition of facial expressions, social emotions etc. that are completely consistent with her Asperger’s diagnosis.

Anyway – let’s get back to the ADHD thing…At school Sophie is (apparently) always in her chair, has excellent behavior, is always putting in great effort and is an “engaged and conscientious learner”.  According to her teacher (who has kids on the spectrum herself), Sophie is showing almost no signs of ADHD in the classroom setting. So one would think that her academic skills should be able to show up in that environment. But no.  At school she is getting mostly Cs.

Why?  Because, again, it ain’t that simple..The IQ tests Sophie was given included things like writing tasks and copying of figures. Now let’s remember that Sophie has fine and gross motor delays, due to hypotonia and hyperflexible joints and dyspraxia. No, she isn’t being lazy. The signals between her muscles and her brain don’t work as fast as someone without hypotonia. And the academic tests she was given were almost all reading out loud, selecting answers from a list and/or giving oral answers. Which means her physical impairments did not impact on her performance.

And when it comes to variations in test results –  let’s not forget the other things that Sophie has to contend with.  Like sensory issues that impact on her day-to-day, hour-to -hour, minute-to-minute performance. And the fact that she has some executive function difficulties.

Now – what do we do about all of this? Well, it was recommended about 18 months ago that, due to her motor issues, Sophie should not be given any form of written testing at school. Or that, should written testing be required,  she should be given additional time to compensate for her physical differences.  We passed these recommendations on to the school.  But does anyone listen? Certainly the school does not. The IQ testers were also supposed to accommodate her differences, by not using written measures. Did they listen? No. If my kid was in a wheelchair, would you ask her to climb a ladder??? I don’t think so.

The only thing any of these damn tests seem to be telling me at the moment is that Sophie is not going to perform reliably on tests.

Now I know there may be people reading this post who may get upset that I have shared so much of Sophie’s personal information on here. Perhaps I may be accused of sharing too much. But in reality – it isn’t information that is in any way a reflection of who she really is, or what really matters. All of these figures and test results are just that – figures and test results.  On tests that are supposedly valid and reliable.  But apparently are not valid and reliable when it comes to Sophie. And so I imagine they probably aren’t particularly useful for many children.  Be assured that there is probably no real reason to get upset about my sharing our experience on here. I’m not going to box Sophie in because of this rubbish. I’m simply going to use the information to help the school to understand what she needs to NOT fall through the cracks,. I will nurture her, help her to shine, focus on her strengths, and support her in her areas of “weakness”. I’m sharing this on here because very often people keep this kind of thing as “personal information”, ” family information”, “secret information”…information that shouldn’t be shared. Why? Because people will label her? Judge her? Maybe they will – but people do that anyway. And those labels will only matter to my daughter if she is brought up to believe  that those labels have any true meaning.   Those labels would potentially damage her if she grew up in a home that told her she should believe everything “the system” tells her. And she certainly isn’t going to get that in this household.

In my opinion – we need to talk MORE about this – instead of keeping it all a secret. Because I know for sure it is not just my daughter, with her “Kabuki Syndrome” and her “Asperger’s” labels, who isn’t best served by the system. Most “normal” kids aren’t well served by the system. That damn school system – the box that takes our beautiful kids and shoves them in the sausage machine and sends them out the other end (more often than not) feeling in some way unhappy about themselves.

I had a label when I was growing up. My label was “highly gifted”. And I believed that label. Did it help me? No. In fact, in later high school years, it made me think I was superman. So I stopped listening. And my grades dropped dramatically.,

Labels, labels, labels. They can be useful to understand certain characteristics, but they sure as heck are not useful in predicting how you are actually going to get on in this world.

The system is broken, not my daughter, and not me.

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Invisible Disabilities (Otherwise known as … “She seems fine to me”)

Some kids with special needs have obvious challenges. They may be in a wheel chair, or have a naso-gastric feeding tube, or facial deformities, or missing limbs. Something that people can see, that people may make allowances for, and (hopefully) have compassion for.

Then there are the millions of kids around the world who have “invisible disabilities”. Kids who scream and hit and bite their parents in the supermarket. Who then get judged for being “brats” and whose parents get judged for being “bad parents”. Or the kids who get bullied at school because they have two left feet, can’t throw or catch a ball and run with their hands flapping wildly in the air. They always get picked last for sports teams. They sit there, humiliated, knowing no one wants them on their team, not knowing what they can do to make it better. Or the kids who continually interrupt, droning on and on about topics of interest only to themselves, blurting out tactless comments and then getting worked up when something seemingly insignificant goes wrong. They have trouble maintaining friendships and look on miserably from the sidelines at the other kids playing and chatting together, wondering what is wrong with them and why “nobody likes them”.
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Spare a thought for those kids. And their parents. The first child may have sensory processing disorder. They find the sensory input at the supermarket impossible to deal with, and don’t have typical emotional regulation due to neurological differences in their brains. So they panic and lash out. Their systems are in overload and their behaviour is NOT a sign of bad parenting.

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The second child may have low tone (hypotonia). This is a neurological disorder that means the messages from the brain to the body don’t work as quickly as they do for other kids. In reality their body will never be as strong or agile as every other kid in the class, and they will always have to work harder just to do simple things like use a knife and fork and stay upright in their chair at school.

The third child may have high functioning autism (Asperger’s syndrome). Their neurological differences mean that the subtleties of body language and social graces are lost on them. Unlike typically developing children, children with autism need to be specifically taught about emotions, and body language, and a myriad of other things that most of us never have to think about. On top of that, the part of the brain that is designed to detect potential threats (the amygdala) can be overactive in autistic children. So something that seems harmless to us can cause a huge release of cortisol and adrenalin in these kids, which then activates the fight/flight response. This overrides the “thinking” part of the brain in the pre-frontal cortex, and means that autistic kids (and adults) can flip into a state of panic about seemingly mundane things. They aren’t being precious, they aren’t deliberately being rude, they aren’t “chucking a tantrum” to get their own way. Their brain has flipped into survival panic mode. It can take lots of training and immense self-discipline for these kids to learn to “self-calm’. Some may never learn, despite their best efforts and the best efforts of everyone around them.

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The differences these kids live with don’t magically get cured, or disappear, or get better simply with the passing of time. Neuroplasticity is an amazing thing however, and improvements can and sometimes do happen. But not without significant intervention and hard work by the child and all of the people in that child’s support network. Intervention that takes time, and effort, and costs money, and often requires the child (and sometimes the parents) to push themselves continually beyond their comfort zones. Sometimes those kids can make great improvements. To the point where the casual observer can’t quite pick the problems, and wonders what all the fuss is about. And then tells the parents that the child “seems just fine” to them. And the child may indeed seem “just fine”. But things may look a little different behind the scenes.

Children with “invisible disabilities”, including my own daughter,  are often working extremely hard to function as well as they do. Unlike other children of their age, they don’t always learn things just by observing. They often need to be explicitly taught things that other children learn easily and naturally as part of “normal development”. Many kids who seem “just fine” are attending therapy sessions five or more times per week so that they can make some attempt at keeping up with their peers. Sessions which require them to concentrate, to work hard, to sometimes push themselves past their limits. They are often overwhelmed by loud noises, or too much visual stimulation. Their bodies may tire more easily than other children, their attention spans may be shorter. So everything requires that extra effort. The kids who seem “just fine” are often working very hard to achieve that. And very often their parents are working hard along with them.

I know from my own experience, and from talking to other special needs parents,  that many of us can struggle with finding the time and energy required to deal with the system. We worry about the time we have to take off work to attend medical appointments and therapies, and the subsequent effect that has on our career progression. Many of us have costs we never imagined having, and earn less each year because we can’t manage our child’s needs and a full time job (at least not without losing our sanity). We are climbing down the career ladder, not up it.

We scrabble to find the money required to pay for the therapies, and to find the effort and discipline required to implement the therapy into the home environment. We rearrange schedules to fit in trips to the doctor for medical certificates just so our children can be approved to have swimming lessons, or go to ballet. Because we live in a crazy world of litigation, and no one wants to take a kid into their class that might have a higher potential for injury unless they have a doctor’s clearance.

And then there is the paperwork. The crazy mind-numbing paperwork. Dozens of pages to fill in to qualify for a miserly $52 from the government each week for “disability support”. Literally hundreds of pages of paperwork to deal with each year. Seriously. Sophie has just turned six and I have three ring binders that are bursting at the seams, filled to the brim with therapists’ reports, medical reports, funding applications, treatment protocols etc. Stack them together and it equates to more than 10 inches of medical paperwork. Meetings with the school at least twice a year (on top of all the regular parent teacher interviews) to negotiate an Individualised Education Plan for your child. And ad hoc meetings to follow up on that plan, because more often than not the things that are promised to help your child are never implemented. And it falls to you as the parent to fight the good fight with the school to ensure that “inclusive education” policies are actually followed.

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Parents may be struggling with chronic sleep deprivation, because their child has ongoing sleep disturbances. They are possibly exhausted from holding down a job, managing a home, managing their child’s additional needs and then staying up late to home-bake the speciality foods their child requires to stay healthy. And they are almost certainly dealing with the ever present niggling anxiety of the “what ifs” and “what will be”…What if that elevated urea level in her blood keeps creeping up, and we are looking at kidney failure? How long until he will need those knee replacements? Will her hearing test be okay this time? Will he be able to live independently?

Then there is the constant questioning of our roles, our values, our choices.. Where do we draw the line? How much therapy is not enough? How much is too much? How much time should we dedicate to helping our kids with therapies and nutritional interventions and alternative medicine and mainstream interventions? How much of our time and resources do we dedicate towards trying to give them the best chance of getting on in the big bad world, and how much time can we spend just being regular mums or dads, loving our kids, playing with our kids? Should I sell the house to pay for his therapy? Or keep the house in case he can’t support himself later? Is it okay for me to spend that $200 on going away for a family camping weekend when that could cover two therapy sessions? Is it okay for me to have a life, have some fun, buy some flowers for the garden, when I could spend that money on therapy? How can I ask for people to contribute to her fundraiser, when I just bought myself a new shirt ? How do we find a balance, how do we do all of this and not lose ourselves in it all? Sometimes we don’t find a balance. Sometimes things swing wildly out of control. Sometimes we caught up in it, lost in it, buried in it.

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Special needs parents may find themselves withdrawing from friends, cancelling attendance at social events, forgetting to reply to that email or text message you sent to them. At their times of greatest stress, they may become cranky, oversensitive, hard to be around. You see once loving couples sniping at each other, or withdrawing from each other, or running away from it all by resorting to affairs, or one more glass of wine, or just another few hours on that computer game. And it can be hard to understand these changes you see in these people you thought you knew. Because without knowing what goes on behind the scenes, what you see is a kid who “seems alright to you”. Things can’t be that tough can they? What is the big deal? I’m not saying our lives are one big ongoing tragedy, that we limp through each day hating the world and everything in it. Our lives are full of joys as well. But the reality is that our experience of parenting can be quite different to the experiences of parents with neurotypical kids. And that in cases of “invisible disability”, much of the struggle can be hidden. And that’s a lonely place to be.

Don’t get me wrong, I’m not saying that kids with “invisible disabilities” have it harder than children with other types of disabilities. Parents of kids with highly visible disabilities get all of the same work and stress and financial distress, sometimes more, much more. This isn’t a competition. We are all in this together. I’m simply focussing on what I call “invisible disabilities” today in the hope of raising awareness around something that isn’t so easy for a casual observer to see.

My own daughter, Sophie, has challenges that may not be readily apparent to someone in the street. Things you may not see unless you live with us.. Things you may not notice if you haven’t had exposure to the secret world of being a therapist, or an educator, or a doctor, or a special needs parent. But challenges that exist nonetheless. Challenges that affect her every single day, and that will continue to affect her for the rest of her life. Challenges that she works damn hard at therapy to overcome. But in many ways she seems “just fine”. So she sometimes doesn’t get cut slack in areas where she needs it. Sometimes I get tired of feeling like I have to explain my daughter’s behaviours, or justify why I might use a particular parenting technique. Sometimes I get tired of feeling unsupported because people think she is “just fine”.

Again, don’t get me wrong, I’m eternally grateful that Sophie doesn’t have to deal with some of the really serious issues that other children with special needs have to deal with. She isn’t in a wheelchair, she hasn’t had to have heart surgery, she walks, she talks, she eats, she jumps and laughs and plays and dances and sings. She has an incredible memory and, at just six, a vocabulary that any twelve year old would be proud of. She lights up my life with her joy and enthusiasm. And I never cease to be grateful for these miracles. In many ways, she IS just fine. And hearing that is sure as hell better than hearing the alternative…”Wow..she seems really f8cked up!!!” But hearing it can sometimes feel dismissive of the challenges she has overcome, and the challenges she still faces each day.

Sophie has low muscle tone and hyperflexible joints. Big deal you say. And yes, compared to being in a wheelchair, these things are a breeze. But these issues affect many aspects of her day to day living. They affect her speech articulation and her fine and gross motor skills. She only just became safe to walk up and down stairs without supervision this year, and only learnt to take her own shirt off about six months ago, at the age of five and a half, A skill that most kids have achieved by the age of two. She only became really competent with a spoon this year, and still spills things much more often than you would imagine. Her low muscle tone makes it hard for her to sit in a seat in class for any length of time. She uses a back support, and a tilted desk, and special pencil grips, and a wrist support to help her in the classroom. Yet still she struggles to keep up with the kids in her class. Not because she isn’t smart, but because her hands can’t get the pencil to do what she wants it to do. And then her low tone makes her tire easily, making it difficult to concentrate, and hence difficult to learn Her sensory issues mean that she is under constant low level stress in the classroom, because 25 prep students make noise. A lot of noise. And that noise throws her system into a state of disarray. So then she can start to act out. Or withdraw.

Sophie’s Asperger’s and sensory issues means that she has difficulty in the playground. Observing casually you may not see anything out of place. Looks like she is playing and getting on just fine. But if you take a closer look you will see that at school she is always engaging in parallel play – playing beside the other kids, not with them. Lost in her own little imaginary world of fairies and unicorns. Which is not in itself a bad thing – hell, I love fairies and unicorns. But it is a problem when Sophie wants to be part of the joint play, and just can’t figure out how to make that happen. A child of her age should be well and truly capable of a reciprocal social interaction with peers of up to 15 minutes, and Sophie is still working on a three minute goal. She’s okay as long as she gets to direct the play, or if she is with kids she is very familiar with, or there is an adult involved, but has no idea how be included in group play in the school playground.

Sophie also has issues with histone methylation. So for the rest of her life she has to have a different dietary regime and take supplements to support her functioning. Not a big deal in the grand scheme of things. Not something you can tell by looking at her. But if she misses her supplements, it shows. The reports from her therapists start to mention attention problems, her handwriting suffers, she starts pushing kids around in class. She tells me “I find it hard to play on the playground because normally I can run, but now I can only walk”. Then the teacher pulls me aside and gently tells me that Sophie has been falling out of her seat a bit this week, and has been unable to control her outbursts in class.

There are other challenges, more than a few, but I won’t bore you with the details of all that in this post. Because the exact nature of all of Sophie’s challenges isn’t really the point of this post. The point of this post is really to raise awareness about what might be going on behind the scenes, not just for our family, but for all parents and kids dealing “invisible disabilities”. The point is to raise awareness of the fact that sometimes, hearing the words “she seems fine to me” , however well intended, may not have the desired effect.

It’s kind of a double edged sword – because part of us swells with pride when we hear these words, and we take the time to reflect on how far our child has come. But many of us also secretly (or not so secretly) wish for understanding. We want people to understand that getting our kids to the point where they seem “just fine” often comes at a great financial, emotional and physical cost to all involved. And hearing those words, no matter how well meaning, can feel dismissive of the challenges our children have overcome. Those words can make us feel that our child’s ongoing challenges are of no consequence. And that we have no right to be tired, overwhelmed and disheartened at times. It can make a special needs parent feel unheard, unsupported, misunderstood, overwhelmed and invalidated,. It’s not pity we are after, but understanding and compassion can go a long way. By all means tell us that our little ones are doing fabulously, that we are doing a great job – sometimes that is all we need to hear. But please don’t dismiss our struggles. Because sometimes we really need that shoulder to lean on, that quiet chat over a cup of tea (or a bottle of wine), that chance to cry and share our worries and feel HEARD. So that we can stand up straight and tall again, feel pride in what our children have achieved and what we have done to support them, and move forwards. We don’t want to live in the world of special needs all the time. In many ways we are still the people we were before our children were born, we want to laugh and play and have fun and experience joy and silliness and beauty and love and all the world has to offer. But sometimes we may just need that little bit of understanding to help get us through our dark places.

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P.S. To all you special needs parents out there whose children have visible disabilities..please know that I am in no way trying to diminish your struggles. As I said in my post, you deal with all of this and often more. And to any of you out there suffering other invisible disabilities like chronic pain, hearing loss, chronic fatigue, depression, anxiety, autoimmune conditions and the list goes on and on..I am not diminishing your struggles either. I hope that my post may help people to take a step back and choose not to judge people in ANY situation. Because we really rarely have a clue about what people deal with in their lives. If we all took the time to be just that little bit more compassionate and understanding towards each other, the world would be a much finer place.
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Dietary Intervention – The GAPs Diet

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I have wanted to write this post for a very long time. But every time I even thought about it, I developed terrible writer’s block. A new experience for me. Writing normally comes easily to me. Why such a blockage? Partly because this is a complex topic. It really warrants an entire book. No single blog post will do it justice. But primarily, honestly…fear. Fear of being judged, fear of reprisal, fear of offending people. But today, finally, I choose to go ahead in the face of my fear. Why? Because I believe in my heart that to fail to write about this topic would be a disservice to those who may find something worthwhile in here. (And then, in one of life’s great ironies, just as I had finally written the first few paragraphs of this post my computer crashed..I hadn’t saved the post, and there was no “recovered document” to be found…haha..the universe is testing my resolve!)

So here we go, let’s talk about diet. I know this is a highly controversial topic in the special needs community. I know there are children out there who are PEG fed, children who will “only eat white foods”, children who can’t tolerate certain textures due to sensory issues, children who gag and regurgitate, children who can’t chew at all. Getting any sort of nutrients into these children can be a battle. And parents of children with special needs are often so overwhelmed with other medical issues, therapies etc that the idea of making dietary changes can seem frightening if not impossible. I do not judge anyone for the choices they make in regards to their children. I believe all parents will ultimately do what they believe is in the best interests of their child. But dietary intervention was life altering for Sophie and our family, so I choose to share our story. I am not a dietitian, nor a doctor. I am not making recommendations on what is appropriate for anyone else’s child, or suggesting that worked for us will work for anyone else. I am merely sharing our story. You may find something in here that resonates with you. You may not.

I have written in earlier posts about what an unhappy baby Sophie was. Refluxy, colicky, crying in pain, waking repeatedly throughout the night. Her bowels were obviously not working well, as she was producing up to 15 stinky runny bowel movements per day. She had bouts of terrible nappy rash. She had loads of sensory issues. She was failing to thrive. She was beside herself, and so were we.

We suspected from early on that she was intolerant of dairy. Removing dairy from my diet while I was breastfeeding helped somewhat, for a little while. But the bowel issues and recurrent night wakings, with Sophie screaming out in pain, continued. I was going slowly insane with the stress and lack of sleep.

Then, when Sophie was about 12 months old, an old and dear friend of mine, Maree Symons (who happens to be a qualified naturopath), spoke to me about the GAPs (Gut and Psychology Syndrome) diet. I listened, but it all sounded a bit outlandish. And to be honest I was resistant to hearing what she had to say, as it seemed like a lot of hard work, and I was already at breaking point. She suggested I read the book. I ignored her advice for a few weeks, then ordered the book and read it. And I cried a river of tears. Why? Because it made sense. Because I knew in my heart that this could potentially really help my daughter. And because I felt it would be an impossible task. The diet sounded like a lot of hard work, and sleep deprivation and hard work are not a good combination. So for three long months I carried on, tucking the GAPs diet into a corner of my brain where it only occasionally came out to taunt me. But I couldn’t ignore that nagging voice forever.

Finally, when Sophie was 15 months old, I decided to bite the bullet and give this GAPs thing a go. What changed? A couple of things. Firstly, Maree told me that even though it might seem like life would be more complicated, the fact that I would need to plan ahead could actually make things easier on a day to day basis – being organized can sometimes decrease stress. That made sense to me. Secondly, our bio-medical doctor suggested that we make a six week commitment to GAPs in the first instance. He said that if I saw no changes at all during that time, perhaps GAPs wasn’t the answer. And if I did see changes, then that would be the impetus I needed to keep going. The GAPs diet is supposed to be adhered to for one to two years. At a time when getting through a single day was a challenge, making a one to two year commitment seemed outrageous. But six weeks – that I could deal with. And thirdly – I had decided that no matter how hard GAPs was, it couldn’t possibly be as hard as continuing on the path we were on. I couldn’t bear to keep having my child waking in pain throughout the night, couldn’t bear the thought of forever struggling to help her gain weight, couldn’t bear the thought of more nappy rashes, and continuing multiple nappy changes throughout the day. Something had to change. It was time.

So what exactly is the GAPs diet? Well I’m not the expert, and this isn’t the place to go into all the details. Some information can be found on http://www.gapsdiet.com/ . And all the details (including an explanation of the biochemistry behind the diet) are in the book (Gut & Psychology Syndrome, by Dr. Campbell-McBride). Essentially, a basic summary is that GAPs is a diet designed to help repair the gut by “healing and sealing” the gut wall and repopulating the gut with healthy gut flora. It is not a diet that you have to stick to for life. It is a diet that aims to fix the underlying digestion issues, rather than simply focusing on removing offending substances for a lifetime. The premise of the diet is that gut function and brain function are intricately linked. If your gut is not working properly, nutrients can’t be absorbed properly, and substances that shouldn’t be circulating in our systems can leak through the gut walls causing all sorts of health problems. It is a diet that is purported to help ameliorate many of the symptoms of autism, help resolve certain psychological disorders and some auto-immune conditions. It involves removing all starchy foods (including all grains, potato, sweet potato, corn and most beans/legumes), reducing fruit and other sugars, removing all additives, preservatives, colourings, flavourings, and eating organic, unprocessed ‘real’ food. GAPs also involves introducing foods such as meat and bone broths (to soothe and heal the gut lining), live fermented foods (to improve gut flora) and healthy oils (for calories and energy). The GAPs diet also incorporates fish oil and cod liver oil. Some people may need to take digestive enzymes or other supplements while on the diet. But primarily, GAPs is about eating real food, for real healing. GAPs also has protocols for children who would normally be completely breast or bottle fed. And GAPs can be done with children who are tube fed (by using a blenderised diet).

Well you can imagine how some people reacted when I suggested we were going to go down this path..What??? You aren’t going to give your child bread? Or rice? Or pasta? No carbs? How will she gain weight/ she is already underweight? Are you crazy? Isn’t that irresponsible? What has your GP said? Has your gastroenterologist approved? Well no, no-one in the western medical profession had given their approval. But we had exhausted all of their advice, and none of it helped. We were going to give this thing a shot.

My mother was one of many people who wasn’t very happy when I informed her of what we were going to do. But Sophie was staying at their house for one night each week, so they had to be on board if this was going to work. I was adamant that we were going to give this a go, and, somewhat reluctantly, my mother (to her credit) agreed to go along with it.

There was just one minor issue. I wasn’t intending to adhere to the diet in full. For those who have read previous posts you will see what a battle we had with breast and bottle feeding. We had finally managed to get Sophie to drink from a sippy cup, and she had finally started to drink rice milk. And I was terrified of giving that up. We tried her on almond milk and she flat out refused. She was intolerant of soy, and it wasn’t “GAPs legal” in any case. So I made a decision to keep her on rice milk (big mistake, as it turned out, but we all make mistakes). We also weren’t in a financial position to buy all organic produce, so I had to pick and choose what foods were the “least risky’ (in terms of pesticides etc), and which organic foods we would be able to afford. I figured that making some compromises while adhering to the rest of the protocol would be better than doing nothing at all.

So we launched into “almost GAPs”. The stove was on almost constantly, with a pot of bubbling stock on the top. I was tripping around all over town to source organic meats, sausages without starches or preservatives, cod liver oil, organic chicken frames. I will not lie. It was not easy. But then the miracles started to happen. Within less than 10 days Sophie’s bowel movements were substantially improved. Sophie was waking less. My mother noticed, and all of a sudden was much more supportive. She started (and continues to this day) to make stock, and cook up big bunches of veggies and other GAPs friendly food for Sophie. As time passed, Sophie’s sensory issues started to diminish. She was gaining weight. She looked healthier. Her overall development improved (probably as a result of improved sleep, and being in less pain). GAPs was working. After about four months, Sophie had completely normal bowel movements. And she was waking only two to three times a night. I figured that was the best we would ever get in terms of sleep. I thought that perhaps her sleep cycles were so disturbed after such a long period of poor sleep, that she would always be a night waker. I was wrong. When I finally had the courage to go ‘full GAPs”, and removed the rice milk, she started sleeping through the night. All night. Every night. Only four days after we stopped giving her the rice milk. For us, GAPs improved Sophie’s life (and ours!) beyond our wildest dreams.

We are not the “model GAPs family”. We followed full GAPs for only six months. It is supposed to be followed for one to two years. But Sophie was doing so well, that we decided to slowly introduce some non GAPs foods. Over the course of the next year we introduced quinoa, buckwheat, potato and sweet potato. Her system tolerated all of these foods. Eventually she was also able to tolerate rice again (perhaps two years after we removed it from her diet). She now occasionally eats corn. She still can’t tolerate dairy or soy, and we chose not to give her gluten. Perhaps if we had done GAPs for two years, her gut could tolerate dairy. Perhaps not. There is dairy intolerance on both sides of our family, and in reality humans are the only species that continue to eat/drink milk products after infancy. (GAPs actually does allow some dairy – but we did GAPs without dairy as Sophie was intolerant). Being dairy free is sometimes annoying, but something I am happy to live with.

Nowadays, Sophie still eats primarily GAPs type meals. With occasional starches and some other rare exceptions. For example we allow the odd artificial colouring or flavoring if at a child’s birthday party or other special occasion (though not any from the “dangerous food additives’ list http://www.traditionaloven.com/articles/wp-content/uploads/list_of_food_additives.pdf ). She is well nourished and eats just about anything we put in front of her.

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For us, changing Sophie’s diet was a resounding success. One of my biggest struggles and heartaches these days is seeing children who are suffering with bowel problems, reflux, colic, sleep problems or sensory issues, and wondering if their lives could be changed with dietary intervention. Hearing of children who could only eat three foods prior to GAPs, and now have a varied diet, and wondering if these children could be helped through GAPs.. Hearing of children who would only eat “white foods”, and who now eat all colours of the rainbow, and wishing that miracle for all parents who have children with ingrained food preferences. I find myself wanting to tell the world, but often keep quiet for fear of giving ‘unwanted advice’ or upsetting parents who are already over- stressed. And who is to say whether GAPs would work for them anyway? But I know it worked for us.

Please note that many children (and adults) take much longer to derive significant benefits from GAPs. We were lucky that Sophie responded so quickly. So if you decide to go down this path, and aren’t getting immediate results, please don’t be disheartened. There are plenty of support groups out there including GAPS Kids and GAPS Pantry on Facebook. There are many different stories, but almost every story is a success story, in that improvements are made. Sometimes miraculous ones.

The Early Days…Feeding, Sleeping, and Other Concerns

Before I start this post I want to make something clear. I don’t intend for this blog to be nothing but a series of sad and sorry tales, full of doom and gloom. Over time these pages will also be filled with wonderful stories of joy and achievement, with tips and tricks for things that helped us through some of our difficulties, therapies we have tried, what has worked and what hasn’t worked. I want this blog to celebrate Sophie, and perhaps (hopefully) to offer some help to other special needs parents by providing information and resources on sensory issues, fine and gross motor delays, social differences, feeding issues, food intolerances, biomedical intervention etc. But I also want this blog to reflect the reality of our journey. And to be perfectly honest, the first twenty months after Sophie was born were some of the darkest days of my life. In the early days (and even now) it really helped me to read other parents’ blogs, to know that we weren’t alone in our struggles. So I choose to share and honour the difficulties of our journey as part of this blog. And I will do so unapologetically. If you want a sanitised version of the truth…pick another blog!

The next two posts are going to focus on Sophie’s early development and feeding issues, and our journey to a diagnosis. It was a not a happy time. It was a time filled with endless questions and no answers. Sleepless nights and tear filled days. After my next two posts, I will start to post about the interventions we have undertaken with Sophie, and the amazing progress she has made over time. I will still be telling “our story” (it’s the only one I have!), but I want to share the knowledge we have gained, not just the trials and tribulations.

Don’t get me wrong…I know that our journey is a marathon, not a sprint. There will be good days and bad days. Always. I’m not promising that all of my posts after the next two will be nothing but sunshine and roses. But I promise you there will be plenty of sunshine and roses too!

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So…here we go…and bear with me…things do get better!

THE EARLY DAYS

Other than the pain from my c-section, the first few weeks at home were not too bad. Sophie seemed more settled that she was in hospital. She slept for up to three or four hours at a time.

 

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Despite this, my concerns remained. She continued to have trouble latching and feeding. She was generally only able to feed for a few minutes at a time before she would fall into an exhausted sleep. She was difficult to rouse and still very floppy. Her head control was totally absent.  She didn’t seem to quite “fit” into her skin.

 

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At about five weeks, symptoms of reflux set in, and thus began what was to be more than a year of sleepless nights. She used to scream for hours every day. She pushed off the breast, refusing to feed. She slept very little. She started to wake every 45 minutes throughout the night. Screaming. Relentless, high pitched, anguished screaming. My heart was breaking for her…I didn’t know how to help. I felt like I was failing as a mother. I couldn’t even comfort my own child.

Frank and I were beside ourselves and didn’t know how to help her. We had just about every single over the counter baby medicine in our cabinet. Colic drops, wind drops, gripe water, homeopathics, baby panadol. At one stage we were syringing various things down her throat every couple of hours, hoping to hell that something, anything, would relieve her pain and stop the screaming. We went to the chiropractor. I changed my diet. We tried all of the (conflicting) advice we were given about feeding. We listened to theories about too much foremilk, too much hind milk, insufficient supply. We were told to feed her on demand, feed her every three hours, wake her to feed her, leave her to sleep. We tried it all. We went to the Queensland Community Health “day stay” unit that provides support for mothers having trouble feeding and settling their babies. Three times. We tried patting her bottom until she slept. Wrapping her. Unwrapping her. Propping up the base of her cot. Nothing worked. She seemed to be more unwell by the day. She was born on the 25th percentile for weight, and within a number of weeks had plummeted to the 5th percentile. She was failing to thrive. On top of the feeding issues, she was having up to 15 bowel motions every day…thin, runny, and stinky. She was not a happy baby.

When Sophie was less than 6 weeks old I returned to our General Practitioner begging for help. By now I had noticed about 15 minor physical anomalies, which I documented for the doctor. I also documented the feeding issues, sleeping issues, bowel issues and my concerns about her “floppiness”. I was now convinced that something really was wrong. I duly gave the list to the doctor. He scanned it briefly. But because I was obviously upset, the GP chose to ignore my concerns and focus on my mood. At my insistence he wrote a referral to a pediatrician. One sentence stating that I was concerned about my child. Three sentences describing how I, the mother was suffering from post natal depression. A brush-off letter if ever I saw one. A letter that pretty much said “I think there’s nothing wrong with the baby – it’s all in the mother’s head”. I felt a knot of anger in my belly when I read the referral, but I thought “Oh well, at least it will get us in the door”.

So off we went to see the paediatrician. Not only did the he refuse to consider my suggestion that Sophie had a genetic condition, he also failed to diagnose her reflux. At her first appointment, when she was about 8 weeks old, he sent us away saying all was well and that she was simply a slow starter. We returned when she was three months old, at which time he decided I must have a milk supply problem (and continued to ignore the other concerns I raised). In truth, feeding was causing her pain, so she wasn’t feeding much. So of course she wasn’t gaining sufficient weight. I asked if it could be reflux. More than once. He said no, it wasn’t reflux. It was a milk supply problem. So he put me onto medications to increase my supply. And then started the horrible regime of pumping milk with an electric pump. Oh how I hated it. Tears would stream as I tried to pump. I was convinced I was a failure who couldn’t make enough milk for my child. Even though I had started with a great supply. Milk spurting from both my breasts. Breasts throbbing and full after a few hours without feeding. My supply had only diminished because Sophie was feeding poorly. She didn’t have a great latch, wasn’t drinking much, wasn’t interested, pushed off the breast. She was feeding less because she was in pain, so of course my supply was diminishing. But my lowered supply was the RESULT of her poor feeding, not the cause of it.

Eventually, during one of our stays at the Community Health Day Stay Centre, a nurse diagnosed her with reflux. She said she could hear regurgitation when Sophie was trying to feed. She told us to go to the doctor that very afternoon and insist on being given Losec. She gave us her work and home number and told us to get the doctor to call her if he questioned the diagnosis. The doctor gave us the medication, and within four days the constant screaming stopped (night waking and screaming persisted for quite some time, but at last our days were more peaceful). So many months of needless pain for my darling Sophie. So many months. Reflux is hardly a rare condition, how could the paediatrician fail to pick it up?

Sophie’s feeding didn’t improve on medication, even though the screaming did. As I later learnt, this is common with kids who have experienced a lot of pain with feeding – they develop a feeding aversion. She would kick and fight me, I had to carry her around the house and keep her moving to convince her to attach. No lovely snuggly feeds for us, no lying down and feeding in bed. So much for feeding her in the sling. Such a struggle it was, Sophie still unhappy, still not sleeping. We would go out and other parents would be holding their babies, cuddling, feeding, the babies would sleep. Sophie would struggle, cry, never fell asleep in her pram. I felt like a crappy mother. I couldn’t comfort my own child. As well as feeding issues, her development seemed delayed. She continued to be floppy. She hadn’t made eye contact until she was 6 weeks old. And even then it was fleeting and infrequent. She couldn’t hold her head up until she was about 4 months old. I noticed she made lots of jerking movements with her arms and legs. She also had obvious sensory issues. She would become hysterical at the sound of the garbage truck approaching, our dog (or any dog in the neighborhood) barking, the vacuum cleaner being turned on.  She shied away from bright light. Doctors continued to tell me that she was just a “slow starter”.

 

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It was at about this time that the public health dietitian reported me to Child Services, purportedly because I was depressed and Sophie wasn’t gaining weight. I had gone to her for help, and she reported me. I had been spending hours each and every day trying to get nutrition into my child and this was my reward. I felt betrayed and sickened. I was terrified that they would take my baby away, when I knew I was fighting with all my might to get her the help she needed. Luckily I worked in government at the time, and knew who to talk to to get the investigation underway as quickly as possible. And thankfully the dietitian’s concerns were dismissed and Sophie was not taken from us.

By this point I was in a bit of a state. Sleep deprivation and stress had taken its toll. I was getting traffic tickets. I once pulled up at a stop sign and waited patiently for it to turn green. A stop sign mind you, not traffic lights. I used to come back to my car after shopping with Sophie and find the front and back door wide open, keys in the ignition. I was virtually hallucinating my way through the days and nights. I was exhausted.

When Sophie was four months old we were accepted for a week-long stay at the Ellen Barron Center. This is a special section of the Prince Charles Hospital, designed to assist parents having trouble with feeding and settling their infants. By this time, it seemed that my every waking moment was consumed with trying to get milk into her. I look back at my admission forms and don’t know whether to laugh or cry. Sophie was still waking as often as every 45 minutes through the night. I had written on my admission forms that “I know Sophie can sleep well, as she has occasionally slept for three to four hours at a stretch”. Wow. Most newborns manage at least this, often more. I thought it was good sign if my four month old could sleep for three hours at a time. Occasionally.

So off we went to Ellen Barron. About half an hour after we arrived, they hooked me up to a double electric breast pump, under bright fluorescent lights, with two complete strangers looking on to see how much milk I could produce. I was suffering from acute calcific tendonitis at the base of my thumb at this time. It was so bad that I couldn’t change Sophie’s nappies by myself, and could barely hold her well enough to feed her. My Mum had been with me the previous week as I was unable to manage Sophie by myself. I was in acute pain, which causes lowered supply, plus I was being watched by two complete strangers while some bizarre electric machine sucked on my nipples. Of course I could produce only a few mls. I felt stressed and humiliated. I couldn’t understand what they hoped to gain by trying to watch me express. Luckily I was immediately referred to an excellent doctor who gave me a cortisone injection to ease the inflammation in my hand and wrist. By the next day the pain had subsided significantly and I could once again hold my daughter. With the pain gone, pumping was easier and I could produce milk once again.

The nurses determined it wasn’t a supply problem. They couldn’t figure out why Sophie was having so much difficulty with feeding, however. And they told us they couldn’t help us with the sleeping as long as the feeding was so bad. The feeding needed to be sorted first. But they didn’t know how to help with that . Great. These are supposed to be the experts and they have no idea how to help us? Are you kidding? If you can’t help, who can? This is the center where Mums go when they’ve reached rock bottom. They were supposed to FIX IT for heaven’s sake. Were we totally alone here? It seemed so.

A couple of other things of note happened during that week. On day one, we saw the pediatrician. Sophie was screaming at the time with her usual high-pitched scream. The paediatrician seemed a little concerned. She wanted to see Sophie again the next day. During the course of the next appointment the doctor mentioned that she thought Sophie had an unusual high pitched cry, and I somehow weaseled out of her that she thought it was a possibility that Sophie had a genetic disorder called Cri du Chat. I can’t remember the specifics of what the doctor said, but I remember I latched on to this idea like a bulldog. Finally, here was a doctor who thought there was a genetic issue, and not only that, but she had an idea of what it might be.

I got straight onto the internet only to discover that if Sophie did indeed have Cri du Chat she would likely never have more than a few words, would possibly not walk until she was 7 or 8 years old, may never toilet train and would probably have a lot of behavioural problems. Well of course I lost it. I KNEW something was wrong with Sophie, and if this was it then I wanted nothing to do with it. But at the same time I latched onto the diagnosis. I was sure this was it. Finally, here was a doctor who seemed to agree with me that all was not right with Sophie. And she did indeed have the high pitched cry that is typical of children with Cri du Chat. We saw a different doctor the next day who said he disagreed with the other paediatrician’s thoughts. I became distressed. Who was I to believe? The hospital called in the he Head of Paediatrics from the Royal Childrens’ Hospital to give another opinion. As it turns out, the doctor who suggested Cri du Chat was a brand new peadiatrician. It was her first week at the hospital. The specialist from the Royal Childrens’ examined Sophie and said he felt certain that Sophie did not have Cri du Chat. He admitted she had some dysmorphic features, but said he could tell from looking into her eyes and observing her behaviour that she was not severely mentally retarded, so the chances of her having Cri du Chat were very slim. Okay so who am I supposed to believe now? We were sent off for genetic testing. I believe they agreed to the testing primarily to calm what had now become hysteria on my behalf. I needed proof that she didn’t have Cri du Chat, because by now I wasn’t about to believe anything that any doctor said. We would have to wait until we returned home to get our test results.

Before we went home, the nurses seemed determined to get me to agree to bottle feed Sophie, at least some of the time. I was desperate to continue to breastfeed, as I felt that providing breastmilk was one of the few things I was able to do for my child. The nurses made an apparently unprecedented decision. They said they would look after Sophie for three hours, so that my husband and I could leave the centre to have a “lunch date’. They suggested we use the time to enjoy each other, have some quiet time, and consider whether we were prepared to consider supplementary bottle feeding. Lunch was a strained affair, I was verging on tears most of the time, and struggling with conflicting emotions. But by the end of our allocated time I had decided I was prepared to at least try feeding her with a bottle. It went against the grain of all the “natural” parenting strategies that I felt attached to. But it seemed like we were running out of options. We returned to the centre and told the nurses we would try bottle feeding. Silent tears streamed down my face as I was shown how to prepare formula, and gave Sophie her first bottle. She didn’t take to it very well, but then she didn’t take the breast very well either.

Our stay at Ellen Barron had not provided us with any significant improvement. We went home feeling battle weary and discouraged, and on tenterhooks awaiting our genetic testing results.

NEXT POST…FINALLY…A DIAGNOSIS!

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