Diagnosis Day – Learning That Your Child Has Special Needs

diagnosis

As a mum who is active in the special needs community, I  often see posts on the various support forums from mums or dads who have just received a diagnosis for their child.  Sometimes the mums and dads are relieved.  Sometimes they are shocked.  Sometimes they are in despair. Almost always there are conflicting emotions.  And that is normal!  When we first receive a diagnosis for our child, it can stop us in our tracks.  Sometimes we have no idea where to turn.

So today, for all those parents, I am posting an article that I wrote many moons ago –  when Sophie was just two years old and recently diagnosed.  The article was published in Practical Parenting Magazine, but for some reason it never made its way onto my blog.  I wrote this article for somewhat selfish purposes – because it was something I would have wanted to read when we first received Sophie’s diagnosis.  I hope it may provide some comfort and assistance to any parents who are coming to terms with receiving a diagnosis for their child….

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So here it is….

Finding Out Your Child has Special Needs

In many ways, our 24-month-old daughter is a typical toddler.  She loves to play with her dolls, watch Playschool, and jump on her mini trampoline.  She can name many different objects and knows her colours.  She loves to show-off to her Nana and Grandpa.  She is not too keen on having her teeth brushed.  She has a great sense of humour and the cheekiest smile.  She loves her “blankie” and has recently developed an obsession with shoes.   But Sophie also happens to have been born with a rare genetic disorder called Kabuki Syndrome.

Kabuki Syndrome affects many aspects of Sophie’s life.  Her gross and fine motor skills are delayed.  Her speech is affected.  She has sensitivities to certain textures and noises.   She has low muscle tone, loose joints, unusual ears and deformed teeth.  She has digestive problems and poor sleeping patterns.  She may have learning disabilities, mental health issues and other challenges as she gets older   It took us 20 stress-filled months to get a diagnosis, and in some ways we are still adjusting to this unexpected journey.  But when I look back at the sorrow and fear I felt in the early stages, I can hardly believe how far we’ve come.

Getting a diagnosis

Some parents may discover their child has a disability through pre-natal testing.  For others, the first hint of trouble may occur at birth.  Perhaps your baby isn’t breathing properly.  Or he has some physical features that suggest a problem – a cleft palate or clubfeet, for instance.

”Not all genetic or developmental difficulties are immediately obvious in-utero or at birth”, however, says Metabolic Physician, Clinical Geneticist and General Paediatrician Dr David Coman.   You might start to suspect a problem because your baby has difficulties with feeding, or isn’t gaining weight.  Or perhaps she is not meeting developmental milestones, or has started to regress. While difficulties such as these do not always mean that your child will have ongoing problems, according to Dr Coman “developmental delay is always a red flag that should prompt input from a medical professional… Developmental delay can be global in that it affects all aspects of the child’s development (fine motor, gross motor, social, speech and language), or it can be confined to specific developmental fields. Speech and language delay is especially important to have investigated.”

For us, I had a feeling that something was wrong from the start.  I couldn’t really explain it – I just thought Sophie didn’t look or feel quite right. I distinctly remember my family passing her around the room, and me looking on thinking “there is something wrong with my baby”.  Over time I noticed poor feeding, poor eye contact, terrible sleep, slow development, endless screaming and many minor physical abnormalities. Convinced that something was wrong, I started searching for answers. Several medical professionals told us that Sophie was “just a slow-starter”.  Others suggested that I was an over-anxious first-time mother. It took several general practitioners, two paediatricians, a speech therapist, physiotherapist, occupational therapist, audiologist, paediatric dentist, ophthalmologist, two hospital admissions, countless hours of Internet research and three geneticists to finally obtain the Kabuki diagnosis when Sophie was 20 months old.  For us, persistence was key.

If you suspect that all is not quite right, speak to your General Practitioner.  Request a referral to a Developmental Paediatrician or Geneticist.  Write a list of your specific concerns, including developmental and physical issues, and behavioural problems.   “Health records, family history, details of the pregnancy, information about the child’s developmental milestones and when they were attained, and pictures of the child at varying ages are often helpful” says Dr Coman.  For older children, “information from the school is always welcome ”.   Update the information regularly.  Give a copy to every specialist that you see.

Sometimes it may be difficult to reach out – you might be afraid to have your suspicions confirmed.  But denial and avoidance won’t help your child.  Getting a diagnosis can provide access to information, services, treatment and support groups – all of which can help your child.  “You should not feel afraid to voice your concerns”, says Dr Coman, “there are no silly questions.”

If you believe your doctor is not taking your concerns seriously, consider finding another doctor.  If you aren’t getting answers, don’t give up!  Research on the Internet, talk to other parents, keep looking for answers. With persistence you may discover the key to a diagnosis.

Coping with a diagnosis

How you feel about your child’s diagnosis will depend on many factors. When and how you find out, the amount of support you have, and your child’s prognosis can all play a part.

“Sadness, anger, denial, fear that you won’t be able to cope, perhaps even a desire to ‘reject’ your child are all normal emotions”, says Registered Psychologist Nikki Oughton.  “Parents might also experience guilt (believing that somehow they are responsible for this), frustration, anxiety, and depression.  It is important to understand that these emotions are all part of a normal grieving process  – grief experienced when a parent is forced to let go of the child they imagined they would have.  It is common to cycle through feelings, and feelings that you thought were passed may come back again.  There is no one right way to feel, and you have the right to whatever feeling you may have at the time.”

For us, the diagnosis was a mixed blessing.  It destroyed that final bit of hope that perhaps I WAS overreacting, and everything would be okay.  But there was definite relief – I could finally stop searching for answers.  Most importantly, receiving a diagnosis restored my faith in my “mother’s instincts”.

 While each person will cope differently, Ms Oughton offers the following suggestions:

  • Stay open to the grieving process – don’t deny how you may be feeling.
  • Share your thoughts and feelings in a safe, supportive environment (eg a trusted friend or a counsellor).
  • Try to find some space where you are not looking after anybody but yourself.
  • Explore creative ways to express how you feel –writing, painting, dancing.
  • Join a support group with others in the same situation.

For us, Internet support forums have been incredibly helpful.  While friends and family have been very supportive, the parents I have met through these forums understand our journey in a way that no-one else can.

I’ve also found it invaluable to remember that a diagnosis has not changed who Sophie is – she is the same person, with the same likes, dislikes and quirks.    The things I love about her have not changed just because we have a diagnosis.

Continuing to Help Your Child

 Once you have a diagnosis, register with your state government provider of disability services.  Contact Centrelink to determine whether you qualify for financial assistance.  Register for early intervention services and respite care  – there can be long waiting lists for these services.

Remember that children with the same diagnosis can have vastly different abilities –  don’t underestimate your child!  Educate yourself about your child’s condition, and the steps you can take to help him reach his potential.

Sophie receives speech therapy, physiotherapy, occupational therapy and nutritional intervention. We have regular appointments to monitor her vision and hearing, and regular paediatric and genetic review.  We work with her each day to encourage her speech and physical development.    Some days I feel overwhelmed, and anxious about the future.  But nowadays I spend a lot more time just enjoying my little girl.  In amongst the appointments we do all the “normal” things that other families do, like trips to the park and the zoo.  We cherish all the small things.  Sophie is thriving, and full of life and joy.   Sure, she may not be quite like other kids – but then what is “normal” anyway?

 

Post script – As I look back on this article now, I can remember the fear I felt when Sophie was first diagnosed.  And the relief.  And I can remember how busy we were trying to get everything “sorted out”.   Sophie has grown, some challenges have been overcome, new challenges have emerged – but you know what?  The overwhelm is less, the fear is less, and the enjoyment is far, far more present.  So to all you new parents – you’ve got this!  One breath at a time, one step at a time, one day at a time – you’ve got this!

 

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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Ballet lessons, life lessons

Sophie ballet

This afternoon I took my beautiful daughter to ballet. And I smiled proudly as she tried valiantly to keep up with the other girls. As she tried again and again to copy what they were doing. As she never gave up, despite her body refusing to cooperate. And I cried silent tears as I was reminded of just how much she struggles with motor planning. As I was reminded of why she is “failing” PE at school. And as I was reminded of all the thousands of hours of therapy she has had over the years to try to help her to “keep up”, in a game she will never be able to “keep up with”.

And then my daughter cried loud and long when I told her that we will be trialling her in a different class. Despite using all my parently wiles in trying to explain that it is the teachers’ job to try to make sure she is in the MOST FUN class for her. She can read. She saw the timetable. She isn’t stupid. She wants to be with the 7 and 8 year olds. Not the 4 to 6 year olds. Of course she does. She will be 8 this year.

In the name of inclusion, I could keep her in the current class, insist she stays with her peers.

But here is the rub. I can see plain as day that it wouldn’t be fair to the other girls or the teacher for her to be in the class. The teacher would have to spend so much time with Sophie that the other girls would miss out. I saw it plain as day.

And my heart breaks a little as I think about whether she will fit in better with the 4 to 6 year olds, or at a special needs ballet school. I am drawn back to a time when Sophie was in preschool, and I struggled with sending her to the special needs school for a couple of days a week..because she didn’t quite fit in there either.

And then I remember that despite my trepidation, Sophie thrived at that school. And she loved it. And I remember that every time I have worried about her, or become upset over these types of things..she has always, always shown me that in the end, she is amazing and resilient and strong. .That in the end, whatever life throws her, and however upset she might get in the moment…she always picks herself up and comes out smiling.

I have so very, very much to learn from my daughter. I only hope that I can be the parent she deserves to have. And what she deserves is someone like her..someone who keeps trying, never gives up, and always finds a bright side in the end. I am so proud of her, I think my heart might burst. 

Speech delays, apraxia and speech therapy

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From the moment she was born Sophie sounded different to other babies.  No lusty cry came from her lungs at birth, but rather, a small mewling sound.  Frank and I commented that she sounded like a kitten.  When I heard her tiny mewling cry, a small knot formed in my gut.  I knew that noise was not the noise that should be expected from a “normal” newborn.  But I quickly pushed those thoughts aside once they lay my daughter in my arms.

Over the next few days, Sophie’s cry became stronger – much stronger – ear piercingly strong in fact!  But her cry still sounded “different”. Her cry was very high pitched, and she just didn’t seem to have the range of different sounds that other babies have when they cry.

After we took her home, and as the weeks passed, I found myself feeling like a “bad mother”.   I had always heard that babies had different sounding cries (hungry, tired, pain, bored etc.).  But for the life of me, I could never hear any difference in her wailing cries. I was surprised by this, as I speak several languages and play the piano, and have always been told I have a ”very good ear”.  So how could I not hear any of the nuances in my daughter’s sounds?  I so very much wanted to be able to interpret my daughter’s needs.  I was constantly guessing as to whether she was tired, hungry, wet, bored or in pain.   But no matter how hard I tried, I simply could not interpret her cries. I came to the conclusion that I was an incompetent, disconnected mother, unable to hear or recognize what my baby was trying to tell me.

In desperation, I bought the Dunstan Baby Language DVD.  This DVD was developed to help parents understand what their newborn is “saying” by interpreting their cries.  The DVD goes over five different sounds and what they mean. It also shows many different babies making the sounds.  According to the Dunstan baby language DVD, there are 5 distinct types of cries that babies make

“Neh” means baby is hungry

“Owh” means baby is tired

“Eh” means baby needs to be burped

“Eairh” (sounds a bit like “air”) means your baby has gas pain

“Heh” means baby is uncomfortable

Well, I listened to that DVD, and I was immediately and easily able to discriminate between the cries. Each and every cry had the distinct and easily recognizable sound described.  I started listening to the babies of other new mums and found it as easy as could be to understand their cries.  But my daughter’s cries had none of these different tones.  She had just the one cry – a high pitched monotone wail.  At least now I knew I wasn’t failing to interpret my daughter’s cries – it was that my daughter simply did not have this range of expression.

As the months went by Sophie did not start to make the other noises that young babies make.  No gurgling or cooing.  Right up until she was about 19 months old, her only vowel sounds were “uh”, “eh” and “er”. (Most babies have developed the full range of vowel sounds – uh, eh, ee, ah oo – by the time they are 6 months old).   Sophie didn’t start to make consonant sounds until she was about 10 months old (most babies start to make sounds like “ba” “na” and “ma’ from around 6 months old).   She first started to string two syllables together at about 11 months (baba, mama etc), which was finally within the range of “normal”.  However, the sounds were infrequent, and she certainly didn’t have any of the typical gurgling babble that other babies had, with strings of sounds put together in a speech like way.  There was no change in pitch or inflectional changes when she was vocalizing.  She never attempted to copy or repeat the sounds we made when playing with her.

When she was just under 12 months old – she spoke her first word!  Tur-tur (turtle).  I breathed a sigh of relief – it was going to be just fine – we wouldn’t need any extra help with this speech thing – she was starting to talk!  She picked up another word that week (“du” for duck), but that was where it stopped.

At this stage we did not yet have a diagnosis for Sophie, and I didn’t know exactly what we were dealing with.  So I did what I had always done, and worked with her symptoms.

We took her to two different speech therapists quite early on – but we were getting nowhere with traditional methods.  We kept being told that most speech delays were due to a lack of appropriate parental interaction with the infant.  They told me to talk to her more, explain things to her, demand a verbal response for things.   Well – thanks for the suggestions – but seriously???  I had been doing those things from the moment she entered the world.  We had been reading books to her from when she was about 3 months old.  I had an almost constant monologue going with her each day.  I spent my days narrating what was going on in the world, using simple language, repeating words – all of the usual suggestions for early speech delay.  It certainly wasn’t lack of interaction or exposure to language that was the problem.

One of the speech therapists that we were referred to through the public system sat Sophie in a room with a doll’s house, picked up a doll and repeated “doll, doll, doll”, looking at her like she was perhaps not comprehending, and waiting for her to respond.   Sophie looked back at her with what could perhaps be described as a bemused look.  If she could have spoken, I imagine she would have said “Yes, it’s a doll!  You don’t have to tell me three times!”.  Sophie knew what a doll was. She simply did not have the oral motor skills to repeat the word.  They sent me on my way, suggesting that I spend more time interacting with her in this way at home. I knew this was not the answer.

So, in my typical manner, I started to research.  Like crazy.  And I came across a fabulous support group for children with Apraxia of Speech (http://www.apraxia-kids.org).  While it was far too early at this stage to tell if Sophie did indeed have apraxia, many of the tips and tricks I learnt through these marvelous parents were so very helpful.  And the information I learnt through that group led me to believe that Sophie may indeed have apraxia (also known as dyspraxia of speech).

As well as the obvious indicators from the sounds she was making (and not making), Sophie had other signs consistent with apraxia.  She had a history of trouble with breast feeding (and trouble with bottle feeding, when we tried to wean her).  She didn’t imitate facial expressions like other babies did (please note this can be an early sign of autism – which Sophie also has – but can also be a sign of apraxia).  Sophie was unable to stick her tongue out until she was about 19 months old (most babies can stick their tongues out from birth – I had her examined more than once to see if she had a tongue tie, but there was no physical abnormality). She lacked normal babble.  She had low tone.  She was uncoordinated. Her fine and gross motor skills were delayed.  Her receptive language skills also far exceeded her expressive language skills, which is typical of children with apraxia.  At 17.5 months of age she had a formal speech evaluation done.  Sophie scored as a 30 month old for receptive language, and an 8 month old for expressive language.  My suspicion that she might have apraxia grew.

And so I started to implement the suggestions from the apraxia boards.  Firstly we started exercises to help stimulate her orally, develop the muscle tone in her mouth and decrease her oral sensitivities. We bought a mini vibrator and used it on her cheeks, and inside her mouth – depressing her tongue and pressing it onto the insides of her cheeks.  Sophie had oral sensitivities – so she HATED it at first.  But as time went on she began to tolerate it well.

And then I started searching for a speech therapist that specialized in apraxia of speech.

At that time there was only centre in Brisbane that specialized in treating children with apraxia.  It was called Max’s House, and, sadly, no longer exists.  I was told there was a long waiting list, that there was little chance we could be seen anytime soon.  But I was determined to get my daughter the help she needed.  So I wrote a long email to them, explaining Sophie’ history, my observations about her overall development since birth, and her speech development.  I also provided them with a list of the things we had been doing at home to try to help Sophie with her speech.  And I explained that despite all of our efforts, we were getting nowhere.  Sophie’s receptive language kept improving in leaps and bounds, but none of the things we had tried have made any difference at all to her verbal expression.  Happily, they agreed to see her almost straight away.

For us, finding a speech therpaist that specialised in apraxia of speech was a gift. Sophie was about 19 months old when we had our first appointment at Max’s House.  She had a marvelous therapist called Kieran.   At that age her only consonants were m, p, d, t, s, n.  She only ever uttered two syllables at a time – “nana”, “dada”, “papa”, “baba”. She couldn’t combine different sounds – not even “bada” or “bama” or other simple combinations.  And at 21 months, when most children have a vocabulary of at least 25 recognizable words, Sophie’s vocabulary consisted of:

  • “nana” – for water, avocado, grandma, yoghurt, banana and ice.
  • “baba” – for bottle, baby and doll.
  • ”dada” – for Daddy, blanket and Jake (our dog).
  • “puh puh” for purple.
  • “tuh tuh” for turtle.
  • “duh” for duck.
  •  A  clicking noise for frog.
  • “Pfff” for fish and sushi

It took a few months of consistent therapy and reinforcement before we started to hear new sounds – like “ee”” for example.  And slowly but surely, Sophie’s speech started to improve.  No other form of speech therapy had resulted in any gains, but specialized therapy for children with apraxia of speech finally unlocked the gates.

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Sophie made remarkable progress once she was getting the correct therapy for her needs. Such remarkable progress that some would question whether she truly had apraxia at all   Apraxia of speech is a complex disorder, and making a diagnosis can be a difficult thing to do. It is often not diagnosed until a child is at least 3 years of age.The experts themselves don’t always agree on whether a child has apraxia or some other form of speech delay. At the end of the day, I don’t really care whether Sophie would have qualified for a formal apraxia diagnosis or not (she was diagnosed with “suspected apraxia”).  All I care about is that she had enough symptoms for me to consider that she may have it.  And that the therapy targeted at children who have apraxia of speech was what helped, when other things did not.  My daughter found her voice – sounds, words, two-word phrases and then sentences started pouring forth.  I cried and vowed to NEVER be that parent who wanted their kid to “just shut up”.  (Okay – I failed on that one – a year or so after her speech came in, I was sitting in the car and she was rabbiting on about the things that kids can rabbit on about – and I thought for one moment “can you just BE QUIET!!!” Then I remembered my vow, and breathed, and reminded myself of just how lucky we were).

At the end of the day, I suppose it was probably a combination of things that helped Sophie to find her voice.  And the lesson for us was not to give up.  Not to blindly believe everything we were told.  Not to automatically assume that the “experts” would always have the answesr. If I had believed what some of the early therapists had told me, I would have gone home thinking I was doing all that needed to be done.  And I could have kept going with the same old things in the vain hope that with time it would sort itself out.  My lesson was the same lesson I have been given over and over again on this journey with Sophie – follow your gut, don’t give up, and keep looking for alternatives if what you are doing isn’t working,

The correct therapy is not a magic bullet.  At the age of seven, Sophie still needs speech therapy.  She still has some enunciation difficulties, and issues with volume and intonation.  But Sophie’s vocabulary and turn of phrase are well and truly advanced for her age, and having access to the right kind of intervention was what allowed Sophie to finally express all of what was held inside her.

I know that all children have different potentials.  I know there are children out there who will be on completely different paths.  Children who may never end up spekaing, but who may end up communicating with assistive technology.  And children who may end up communicating just through a gleam in the eye.  This post isn’t suggesting that we can “fix” every problem with our special needs kids.  It is really about reminding ourselves to explore options, and to listen to our guts if we feel there are alternative pathways that we need to explore to help our children.

Always believe, never give up, and then. accept with grace whatever the outcome may be.

Blessings to all

Kath

ADDITIONAL INFORMATION

I’m including an end note on this post, for parents who have found their way to this blog because they are trying to figure out whether their child has a speech delay that requires intervention.  For those parents. I have provided some information here about some warning signs of speech delay, and some early intervention strategies. We used all of these strategies with Sophie   I hope this information may be of help.

Early milestones

  • At around 18 months, children tend to go through a language explosion, and may have around 25 words.
  • By two, children will usually be putting two words together (‘mummy car’, ‘daddy gone’).
  • By two and a half, children should be able to follow three step instructions (‘get the car that’s under the table and bring it here’), and ask ‘where’, ‘why’ and ‘what’ questions.
  • By around three, children should be able to have a conversation with adults, sit and listen to a story and understand most of what is said to them.

Things you can do to encourage early language development include:

  • Talking to your child often about what is going on around them. Describe what you see, what people are doing and how you are feeling as you go about your day.
  • Using words repeatedly and with different contextual information within the one interaction. Eg “Yes, it’s a ball. Look at the ball. It’s a red ball. Would you like to throw the ball?”
  • Slowing down your speech, and emphasizing the beginnings and endings of words.
  • Reading picture books to your child from a very early age – children enjoy the attention and looking at the pictures, and it helps to develop a routine that can eventually lead to a love of literacy. Children as young as 3 to 4 months of age can enjoy looking at books while they listen to their parents read the words.
  • Singing to your child – the repetition of words and phrases, combined with the rhythm and melody, can engage your child and heighten their curiosity about language.
  • Getting down to the child’s level, face-to-face when
  • Making sure your child is ready to listen before you start talking.
  • Using age-appropriate sentences that your child can copy. For a two year old, try  “It’s dark! Go inside”, rather than “We have to go inside because it’s getting very dark out here”.
  • Modellng correct grammar. If your child says “I runned in the race today”, you might say  “Wow, you ran in the race today. I bet you ran really fast!”

If your child is at the age when they should already be speaking, but is lagging a little, there are many things you can do to help. These include

  • insisting on some sort of verbal effort for anything he or she wants – with Sophie, when she wanted to get down from her high chair I would say “What do you say? Say down please, Mummy”. She would say “duh”. I would say “please Mummy?” She would say ”Mama”. I would then praise her and get her down.
  • Making sure you give your child plenty of time to respond. Don’t just jump in and answer for them

 Other exercises that may help you child include:

  • Working in front of a mirror, showing your child how to purse their lips, poke out their tongue etc.
  • Helping teach your child to blow bubbles through a straw
  • Using an electric toothbrush or mini-vibrator to stimulate your child’s cheeks, lips tongue etc.
  • Introducing some form of sign language. We used “babysign” with Sophie, and PECS (Picture Exchange Communication System)

None of these tips are a guarantee, but in my opinion they are worth trying,  And whether your child develops speech or not – at the very least you will have spent lots of quality time with your child, and you will know you have given them every opportunity to find their voice.  What is there to lose?

Please note that all of the activities noted above are general recommendations that experts agree can assist children with early speech development.  And they are useful tools indeed.  Some of these hints and tips may be more than enough to help many children with a simple early speech delay. But if your child does have apraxia, or some other more complex issue (such as a genetic disorder, or autism), then you may find yourself not getting far with these suggestions.  That doesn’t mean these things aren’t worth doing – they certainly are!  But if you are doing all of these things, and your child still isn’t making progress, you may want to consider getting more tailored professional intervention.

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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Early Childhood Development and Special Education

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When It was first suggested to me that we take Sophie to our local Early Childhood Development Program (ECDP), I was reluctant.  ECDP is a version of early intervention that has been available in Australia that is directly linked to Special Education Schools.  ECDP has playgroups  that parents and children can attend from birth until 3.5 years of age.  From the age of 3.5, children can attend a classroom for up to two days a week without parental supervision.  Children can then proceed into the Special Education Schools if needed, or enter main stream schooling with supports.

I knew that my beautiful daughter needed extra supports.  She was already receiving physiotherapy, occupational therapy and speech therapy, and she needed assistance with social skills.  I knew she had a genetic disorder.  I knew this would be a lifetime journey.  I had fought for many long months to actually obtain a diagnosis. But for some reason I was still struggling with acceptance.  I didn’t want my child to go into “Special Education”.  I was worried that her behaviours might regress.  I didn’t want other people to see her as “different” (although I had known she was “different” from birth).  I thought we could battle it out in the mainstream system.

Despite my desire to believe that the mainstream system would be sufficient, I thought I owed it to my daughter to at least find out what the ECDP had to offer.  Sophie and I went along to the ECDP playgroup for a few months when Sophie was about 18 months old. But then I stopped taking her, and reverted to a “normal” playgroup.  And  I found myself caught in a bind.  Going to playgroup with “neurotypical” children was difficult.  I found it hard to connect with the other Mums.  Our experiences and concerns were so vastly different.  And seeing the differences between Sophie and the other children tugged at my heart strings.  Their journey was so different to ours, and I longed to be around other parents who understood what it was like to have a child who was “outside the norm”. But going to ECDP playgroup felt just as hard.  There I was reminded of the reality of our situation.  There, there was no denying that Sophie was surrounded by her peers.  And I suppose I wasn’t yet ready to fully accept that Sophie needed the support that the ECDP had to offer.

Finally I swallowed my pride and fears, and more than a year after leaving the ECDP playgroup, we went back and enrolled her into the ECDP kindergarten program.  Sophie was three and a half years old, and I was ready to accept that we could benefit from the help that the ECDP would provide.  At the time, Sophie was also attending a mainstream daycare/kindy for a few days per week.  While Sophie loved her mainstream kindy, she was always on the edges.  Every time I picked her up, she was playing alone in the playground.  She struggled to choose tasks and follow through without assistance.  The shear number of children in her group (25) made it easy for her to “fall between the cracks”.

At ECDP Sophie thrived.  There were only eight children in her class.  The teachers were experts in their field.  They knew just how to encourage Sophie so that she started to take an interest in her peers.  They helped to keep her on task when she was struggling and wanting to retreat.   They provided extra assistance with her speech, fine motor development and gross motor development.  Here were the people who could help my daughter to thrive.  As an extra bonus, with the expert help provided by the caring staff at her ECDP, Sophie started to become much more engaged in her “regular” childcare setting.  The skills she was being taught at ECDP flowed over into her “regular” early childhood environment, and she started to thrive there as well.  The staff from the ECDP even visited her “regular” daycare centre and provided guidance to the staff there on how to best help Sophie enjoy her days, and the types of support that would help her blossom.

And when it came time for Sophie to start Prep (the first year of formal schooling in Australia), the wonderful staff from the ECDP were absolutely invaluable.  They wrote reports for us to give to her school, outlining her strengths and weaknesses.  They provided the school with guidance in regards to what accommodations Sophie would benefit from in the main stream system.  They talked me through my fears, taught me how to advocate within the school system, and assured me that I was welcome to speak with them at anytime if I needed more help with transitioning Sophie to school.

I know without a doubt that without the input from the ECDP, Sophie’s transition to mainstream school would have been much more difficult.  With the help she received from ECDP she was equipped to start school along with her peers. She had learnt how to manage her bag and her lunchbox, how to ask to go to the toilet, how to sit in circle with other kids, how to play in the playground without pushing her peers away, how to eat her lunch without assistance.  Basic things for kids without special needs.  Things that can require a lot of time and effort to teach for children who are struggling with motor skills or social problems.

So in the end, sending Sophie to a “special school” in her very early years was a gift.  To any parents struggling with this decision..if you have the opportunity, I would say..take it! Grab it with both hands. You will know soon enough by the changes you see in your child whether it is a good place for your child to be or not.

But here’s the rub.  In Australia, they have just passed a bill that will abolish ECDPs.  Our children will no longer have access to this amazing and invaluable resource.  Kids will miss out on the specialised support they need to thrive.  In my opinion, this is a travesty,  There is no doubt that early intervention can make a huge difference to kids with special needs.  Removing this valuable service feels like a crime against our kids.  And I imagine that Prep teachers in mainstream schools could be overwhelmed when they start to have kids coming into those schools who need more support than ever before, because early intervention was denied to them.

For anyone reading this post who is in Australia, if you would like to have any chance of seeing the ECDP system remain..I would urge you to sign the linked petition.

To those in other countries…if you have a service like this available…my advice would be to give thanks for it and give it a go.  You may very well be surprised, and see that any fears around special education are unfounded.  Special kids often need some special help.  Let’s hope and pray that legislators in Australia will see the folly of their decision to abolish this invaluable service, and that it will be reinstated, giving parents and children for years to come the best opportunity for a great start.

 

https://www.change.org/p/qld-minister-for-education-save-the-early-childhood-development-program?recruiter=10270613&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_page&utm_term=des-lg-no_src-custom_msg

Minor Mummy Heartbreak Moment

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Well it’s been a while between posts. And this one isn’t what I had planned on writing.

I lost my first true adult love (and dear friend of 20 years) just over two weeks ago. An early and completely unexpected death. Heartbreaking. So I haven’t been up to writing until now. RIP Jimmi, I know you are watching over us.

And right now, I think my heart just broke a little more.

Sophie …”When I’m at Nana and Papa’s and they tell me not to suck my thumb, I tell them ‘Mummy and Daddy don’t seem to mind‘”…and then, after a brief pause…”And my teachers don’t seem to mind.“… Another pause, then…”The children at kindy mind my squiggling.“… Me “What do you mean?”…Sophie…”Well, look at this…I squiggle like this…(making large arm waving movements in the air)…”And they do it like this“…(making little finger waving movement in the air)… “And they don’t like how I squiggle. They tell me I’m doing it wrong.” ..Me… “How does that make you feel?” …Sophie…”Sad“… Me… “And what do you say to them?“… Sophie…”I say…That’s the only thing I can do“.

Thus ensued our first serious conversation about Kabuki (which she knows she has, but has never questioned). I talked to her about people who wear glasses, and people with guide dogs, and how some people’s bodies work differently to others. And how squiggling is easy for those kids, but harder for her because her body isn’t yet as strong as theirs. And that she should be proud of working so hard at something that is harder for her. And that there is really no “right” way to squiggle. That I love how she squiggles now, and if she gets better at it I’m sure I will love that too. Plus all the stuff about effort and perseverance being a more worthy quality than just being able to do something etc etc etc.

Ouch. Really truly ouch. Feeling sad. And somewhat inadequate. Wish I had superpowers to protect her from what is already starting to come her way.

She is a being of light. Please let no-one quash that.

Postscript… Frank just came out after finishing our family night-time ritual, and told me that Sophie said… “Daddy…do you know why it took so long for Mummy to get you tonight?“… (I usually tell her a story, the two songs, then he comes in for last songs before sleep). Sophie said “Because Mummy and I had to have a talk and a cuddle.”

Sometimes I wish the world was more forgiving. But I need to remember that people can’t understand what they don’t know. And need to persevere with giving Sophie the best of the knowledge and wisdom I have to offer. Which I hope with all my heart will be enough.

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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Pregnancy and Birth

Sophie’s conception, pregnancy and birth weren’t exactly what I had hoped or planned for.

Sophie was conceived via IVF. I was lucky enough to fall pregnant on our second attempt (after only one full cycle, and one frozen embryo transplant). I had a small bleed at about six weeks, but didn’t miscarry. At 12 weeks, when we had our first “proper” ultrasound I remember Frank and I laughing because Sophie seemed to turn around and wave at the camera. It was a lovely moment in what was otherwise a fairly stressful pregnancy.

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I had a feeling in my gut that things were not as they should be. But I have a tendency to be pessimistic and overly anxious at times, and we were dealing with other stressful life events at the time…so I did my best to ignore that feeling. We did however decide to have an amniocentesis at about 18 weeks. The lab had trouble growing a decent cell line, which concerned me. They made a second attempt and were able to culture “just enough” cells to give us the news that we could expect a “normal” baby. That was long before I had the understanding of genetic testing that I have now. If I were to fall pregnant again I would not have an amniocentesis. There is a risk of loss, and amnios don’t actually give you much information at all. But I digress. The amnio was at least able to give us a definitive answer as to the sex of our baby. And I was absolutely delighted to discover that I was pregnant with a little girl. I know it’s politically incorrect to say this, and the correct thing to say is “I don’t mind what sex the baby is”…but in honesty, I wanted a little girl, and couldn’t wipe the smile off my face.

Unfortunately, at 26 weeks I contracted what was suspected to be swine flu. I was bedridden for about ten days.. I never really recovered from that flu, and went on to develop a terrible cough that lasted through all of my last trimester. Most days I coughed so much and so hard that I would end up vomiting several times just from the coughing. Whooping cough was suspected, but not proven. I had terrible reflux so had to “sleep” sitting up (supported by about six pillows) for the last three months of the pregnancy. For those last three months I was lucky to get four or five hours of sleep a night.

I was taken to hospital by ambulance twice in the week before I went into labour, in “respiratory distress”. One doctor stated that they would have to perform an emergency c-section to “get the baby out”. Another countered that I was too unwell to undergo surgery. Given the baby was showing no signs of distress, it was decided that the best course of action would be to attempt to get me “well enough” to undergo labour. I was given a plethora of drugs, including antibiotics and steroids, to try to clear my lungs and assist my breathing. All this after I’d studiously avoided taking any pharmaceuticals throughout my pregnancy, in an attempt to give my baby the best start in life. I was exhausted already and my darling daughter wasn’t even born yet!

With my ill health, I suppose it is no surprise that I only put on 6.5 kilos throughout the pregnancy (and I wasn’t overweight to begin with – I am 163cms tall and weighed 58 kilos when I fell pregnant, and 64.5 kilos when Sophie was born). At 38 weeks I was sent for an ultrasound as the baby seemed “small for dates”. The ultrasound showed no abnormalities, and a “normal” baby, just a little on the small side.

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My health was marginally improved by the time I went into labour at 39 weeks. The birth itself was far from the birth I had envisaged. I had hired a doula, gone through the alternative birthing centre (rather than the mainstream hospital), had my own midwife, drunk the raspberry leaf tea, attended the yoga classes, read the books on how to avoid the “cascade of interventions”, participated in hydrotherapy during pregnancy and had a labour plan and an active labour…. all in the quest to achieve a much longed for natural birth. Hah! Instead I ended up with a long and horrific labour, every intervention imaginable, and an emergency cesarean section once Sophie’s heart rate plummeted to 50BPM and failed to recover between contractions. I suppose it was no real surprise, given that I went into a long labour already exhausted and unwell. And as it turns out Sophie’s head was caught on my pelvis and failed to enter the birth canal. None of which was my “fault”. But regardless, I felt dis-empowered, and I felt like a failure. I felt like I wasn’t a real woman, and somehow not a “real” mother.

From the start things weren’t quite right. The tiny mewling kitten sound Sophie made when she was born was far from the healthy indignant cry I had expected. That was the first warning. Despite my sense of unease at the unusual sound of her cry, I remember the overwhelming sense of relief that she was born alive. Despite being covered in meconium, she hadn’t aspirated any. And her Apgars were 8 and then 9, so all seemed okay. I tried not to wonder why she sounded so different to other newborns. And why she felt so ‘floppy”. And thankfully, I have one beautiful and crystal clear memory of being overcome for a moment by a sense of complete and overwhelming love for her. I thank god for that moment, because that loving feeling disappeared pretty quickly and was not to return until she was about 9 or 10 months old.

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The attending midwife came to visit me the day after Sophie’s birth, and claimed that she had never seen such a gruelling labour in her whole thirty years of practice. She claimed that if we were in Africa it would have gone on for another three days, and both Sophie and I would have died. My doula also said she had never seen anything like it in the hundred plus births she had attended. But for some reason I found no comfort in this – in my addled and exhausted brain I decided they had told me these things in an attempt to make me feel better. I was devastated by the way the birth had gone and felt like a failure. As it turns out, the birth itself was going to be the least of our problems. But we didn’t know that yet.

NEXT POST…HOSPITAL STAY AND DISCHARGE