Therapy – When Enough is Enough

stuttering2

Sophie was two years and eight months old.  She had finally mastered all of her vowel sounds and many consonants, and was putting together some lovely phrases.  Her articulation was still far from perfect.  Most people who didn’t know her struggled to understand almost everything she said.   But her progress was undoubtable, and more than we could have hoped for.  She was speaking fluently, with good vocabulary, and her only hurdle now was the issue of intelligibility.  She had come so very far.

Then, all of a sudden, out of nowhere – she developed a stutter.  Not just an occasional stutter.  A distinct and constant stutter.  Every word that came out of her mouth was laboured..   “M-m-m-m-m-m-mummy, I am h-h-h-h-h-h- ungry…I w-w-w-w-want f-f-f-fwuit”.

I felt my stomach drop.  What was this?  Why?  Why, after so much hard work, did she now have this setback?.  It came on over the period of about three days.  From nothing, to full steam ahead.  It was in every utterance.  And it could not be ignored.   With each passing day my worry grew, with each passing day her stutter got worse.

Here is a sound clip of her trying to say “Trying to lock that..need to move the other door”.

 

After about two weeks I was able to get her in for an assessment with her speech therapist.  He recorded her talking, dutifully undertook a “stutter count”, and came back to us with the news that she had “a  severe to profound stutter, that would definitely need intervention, and would not resolve on its own”.  On the bright side, he assured as that as we had caught it early, chances of it resolving with intensive therapy were very good.

stuttering image1

Stutter remediation therapy was to start the next week.

That weekend we went to a birthday party.  Sophie’s therapist had advised not to draw attention to her stutter, and to give her every opportunity to finish her own sentences.  I handed  a note around to the party guests.  This is what it said:

Sophie has developed a stutter.

To help her:

  • Please do not interrupt her – let her finish her sentences
  • Please do not correct her speech
  • Please do not mention her stutter in front of her
  • Be patient!

THANK YOU

For some reason, during the course of that party it all became too much for me, and I ended up leaving in a puddle of tears, asking Sophie’s dad to take over the reins for the night.  I headed to a fellow special needs Mamma’s house,  where I proceeded to cry, drink some wine, cry some more and then sleep.

I returned home the next day with a forced smile on my face, and went through the motions, wishing it was Wednesday so that therapy could begin and we could start to “fix” this damn thing.

That night we had Sophie in the bath.  There she was, all slippery, wet, gorgeous toddler enjoying her bath, playing with her plastic cups and her dolly.  Then she stopped playing for a moment.  She picked up her doll.  She picked up a plastic cup.  She placed it on the dolls right hand.  She whispered (with not a HINT of a stutter) “This is the mummy”.  She picked up another plastic cup.  She placed it on the doll’s left hand and whispered .. “This is the Daddy”.  Then she held one cup in each hand and pushed them together (as if giving the doll some kind of hug).  And in her beautiful squeaky little voice she whispered… “It’s alright mummy, I’m okay,  It’s alright Daddy, I’m okay”.    Calmly, quietly, deliberately.  Without a HINT of a stutter.  It was like a kick in the guts.  But the best kick in the guts you could ever hope to have.  It took my breath away.   I gave her a hug, dried her off, tucked her up in bed.  And then went to my own bed where a flood of emotions and thoughts and realizations hit me.

I realized that every time we “played”, I was using “therapy tools” that we had learnt to try to help her development.  I realized that since the time I first became aware that her development was delayed, I had not bought her a SINGLE toy “just for fun”.  Of course I had bought her things that would be fun – but every purchase I made had the background thought of “How will this help her gross motor development?  How will this help her fine motor development”?  Will this help her speech development?”  I had taken the recommendations of the therapist too far.  I had turned every interaction we had into a home therapy session.  I never really relaxed and just PLAYED with her.   I was so scared about so many things, and so desperate to make sure that she would “be okay” that I had forgotten to enjoy her.  I had been too busy trying to “fix” her.  And I knew  know that had to stop.   Right there and then.  Because for her to really truly “be okay”, no amount of therapy in the world was going to cut it.  What she needed was her mum.  Playing with her.  Having  normal, natural, loving interactions WITHOUT an agenda,

And so it stopped.  Right there and then.  I woke the next morning and went to her. I did not try to correct a single utterance that came out of her mouth.  No more did I ask her to try to repeat a sound until it was “just so”.   I didn’t try to help her master her fine and gross motor skills as we played.  Instead, I was just with her.  Being there.  In the moment.  Reading to her.  Playing with her.  Not thinking about what needed to be “fixed”, or what her next therapy goal was.  With the clear guidance she had given me the night before, I accepted that she would be alright.  I changed my intention when I played with her.  I dropped my agenda.  I finally allowed myself to just BE with her.

And then the miracles came.  Showing me that I had truly heard my daughter’s message.  Sophie’s stutter disappeared within the course of a week.   My own stress levels dropped dramatically.  Our bond solidified, my anxiety decreased, my belief in a better future increased and we both blossomed.  Finally I could breathe, and so could she.

We took her back to her speech therapist for what was to have been her first session to  address the stutter.  But she had no stutter.  Her therapist said he would never have believed that her stutter had been as severe as it was if he hadn’t witnessed it himself.    He wrote to us saying:

“I was really amazed to hear Sophie’s speech on Monday. She did not stutter! Spontaneous recovery can happen in stuttering but not usually from the type and severity of stutters that Sophie was making. Amazing stuff!

And he later went on to write his thesis about stress and stuttering, as a result of this experience.

Now I’m not suggesting that mums or dads should stop trying to help their kids.  I’m not suggesting that parents stop trying to implement the techniques you learn at therapy in the home environment.  I believe that Sophie would not be where she is today if she hadn’t had help both from professionals and in the home environment.  She needed therapy. Early intervention was critical and beneficial.  But  what she DIDN’T need, was for her WHOLE LIFE to be about therapy. And as a mother, I didn’t need my whole life to be about being her therapist.  What we both needed was time to just be mother and daughter, enjoying each other.  So after more than 2 long years of being her every day  therapist, I finally sat back, I stopped pushing so hard.  I decided to let the therapists do the work and to take a break from it at home.  A decision I have never regretted.

Over the years we have been through periods where I have had to do therapy work with her at home again.  But never to that extent.  Never have I lost the lesson she taught me.  Which is that our children need us to be their mums, before they need us to be their therapists.  Enjoy your child.  Stop.  Breathe,  Take time to smell the flowers. Don’t make it all about therapy.  Because sometimes, enough is enough.

flowers2

flowers3

flowers1

 

 

 

Using nutritional supplements

In today’s modern world we are fortunate to have access to nutritional supplements that may be helpful in supporting our health. Taking supplements may help to boost nutritional status, improve methylation, and may even have the capacity to help unwind chromatin from the DNA to improve overall functioning. There are, however, a number of factors that should be considered before taking supplements. Some things to consider in order to help maximise benefits and minimise harm include the following:

1) The vitamins and minerals in our bodies work synergistically. Supplementing with just one vitamin or mineral can sometimes disrupt the balance of other vitamins and minerals in the body over the longer term. Choline, for example, is considered to be part of the B vitamin group. Taking just one of the vitamins from this group can create imbalances in the body. It is therefore generally recommended that a B complex be taken along with the choline. This information holds true for all vitamins and minerals – if you are going to supplement with something, you need to be aware of what else you may need to include to ensure that imbalances don’t occur.

2) Some vitamins/ minerals compete with each other for absorption. For example, iron competes with zinc. It you take supplemental iron at the same time as you take zinc, then less zinc and iron will be absorbed. Some supplements need to be taken at different times of day to prevent this issue.

3) Some supplements are not appropriate for some people. For example, magnesium should be used with caution in people with renal impairment, and is contraindicated in people with advanced renal disease or renal failure.  Iron supplements should not be taken by children unless iron studies shows an iron deficiency, to avoid iron toxicity.  Fish oil should not be taken by people with platelet disorders such as ITP, as it increases the risk of bleeding,  These are just a few examples of many contraindications.  It is important to be aware of all contraindications before starting on any supplements.

4) Supplements can interact with prescription medications.  An awareness of all potential interactions is crucial to avoid negative or dangerous outcomes from supplementation.

5) Different forms of vitamins and minerals are available in supplemental forms. Some forms are more bioavailable than others, and some forms are more appropriate for certain conditions. For example, magnesium can be found in supplements as magnesium sulphate, magnesium citrate, magnesium oxide, magnesium orotate, magnesium chelate, magnesium chloride, magensium glycinate, magnesium lactate, magnesium malate and magnesium carbonate.   Magnesium citrate and magnesium oxide may be used for their laxative effects.  Magnesium malate is more suitable for supporting the production of cellular energy.  Magnesium taurate is considered to be the most effective for supporting heart health.  Magnesium glycinate is considered to be most useful for inducing relaxation, supporting sleep and helping with stress management.  It is important to know which form of supplement is the most suitable for the condition you are supporting.

6) Some forms of supplements should be avoided by some people due to their genetic makeup.  For example, it is generally recommended that people with MTHFR mutations do not take folic acid or the form of B12 called cyanocobalamin.  Rather, they should take folinic acid, or 5 -mthf, and B12 in the form of hydroxocobalamin or methyl b12.

7) The therapeutic dose for a vitamin or mineral is not the same as the recommended daily intake (RDI), and different therapeutic dosages are often needed for different conditions.   For example, the recommended daily intake for zinc is 14.0 mg  for adult males, and 8.0 mg for adult females (1) ).  The therapeutic dose for zinc for asthma is 30mg – 50 mg per day (2).   The therapeutic dose of zinc for for rheumatoid arthritis is 45mg – 80mg per day (3).

8) Dosages for children are different to dosages for adults, and should be calculated by weight or by using “Clark’s rule” or “Young’s rule”.

9) A poorly functioning gut will not absorb supplements (or food!) properly. Making sure the gut is functioning optimally is an important factor when using supplements. Otherwise you will be spending money on supplements that will be poorly absorbed, so you will not get maximum benefit from your money.  Gut health is essential for overall health and wellbeing, and should always be an important consideration in any treatment plan.

10) When starting on supplements designed to assist with methylation, you need to support the methylation pathways to open up, and make sure you aren’t going “too fast too soon”. Otherwise you may run into problems with overmethylation. I have personally experienced what it feels like to take too much too soon. It was NOT pleasant. I was super anxious. My heart was racing, I was grinding my teeth, and generally felt uncomfortable in my body.   Overmethylation might also show up as increased anxiety, or more meltdowns.  It is important to be able to recognise the signs of overmethylation, so that decisions about appropriate supplements and dosing can be made.

These are just some of the things that need to be considered when using dietary supplements.  It is recommended that people work with a professional (eg qualified nutritionist, naturopath, integrative GP etc) to determine the optimum supplement protocol and dosages, based on individual case history and individual goals.

I am not in any way trying to scare people off the use of supplements.  Dietary intervention and supplementation have been nothing short of miraculous for us.  When we don’t give Sophie her supplements, her teachers and therapists notice. I am sharing this information to advise caution, in the hope of helping people to avoid any negative consequences, and in the hope of ensuring that people get maximum benefit from any supplementation they do undertake.

Please bear in mind, as always, that I AM NOT a doctor or qualified nutritionist (yet!). I am an interested mother, with a background in research, who has been passionate about finding answers to help my own child and others. I am currently studying nutritional medicine but I am not yet qualified.  I would suggest that people work with a qualified biomedical doctor, integrative GP, nutritionist or naturopath to ensure that you are going to help and not harm when using supplements.

 

  1. National Health and Medical Research Council. (2014). Nutrients.  Retrieved from https://www.nrv.gov.au/nutrients
  2. Rerksuppaphol, S., & Rerksuppaphol, L. (2016). Zinc supplementation in children with asthma exacerbation.  Pediatric Reports, 8(4), 63-67. doi:  10.4081/pr.2016.6685
  3. Hechtman, L. & Costa-Bir, L. (2012). The musculoskeletal system.  In Hechtman, L., (Ed.), Clinical naturopathic medicine (1st ed., pp. 508-630). Chatswood: Elsevier Australia

Kabuki, growth and short stature

Short stature is common in people with Kabuki syndrome. Is there anything we can do about it?

Some of our kids have a lack of human growth hormone (hGH), which would of course contribute to short stature. But some of our kids have normal growth hormone levels and still have short stature. There are a number of factors that affect bone growth. Some are hormonal factors, and some are nutritional factors.   I have collated some information on some of the factors that may need to be considered for optimising growth.  This is not an exhaustive list, but it’s a start 🙂

Hormones that affect growth include:

IGF’s (insulin-like growth factors) – IGF is needed in childhood for optimal bone growth – this hormone promotes cell division at an area at the long end of bones that contains growing bone (an area called the epiphyseal plate). Production of this hormone is stumlated by hGH and can be impaired by undernutrition. IGF1 can actually be increased by increasing protein intake.

hGH (Human growth hormone) – this is a hormone that stimulates growth, cell production and cell regeneration in humans. Please note that HgH is not just responsible for growth – it is considered to be a very complex hormone and many of its functions are still unknown. Recent studies are showing that it can have an effect on mental and emotional wellbeing, as well as helping to maintain energy levels. It has many other functions such as increasing protein synthesis, increasing calcium retention but I wont go into all that here because this post isn’t just about hGH – that needs a book!

Thyroid (T3 &T4) hormones – works in synergy with HgH to promote bone growth. if your child is having issues with growth, then their thyroid hormone levels shoudl be checked, as well as their hGh. Please note that not all blood tests for thyroid hormone are as useful as others – as well as looking at T3 and T4, it is also useful to look at FREE T3 and T4, and reverse T3.

Calcitonin and parathyroid hormone– These are two other hormones made by the thyroid (not measured by looking at T3 and T4). Calcitonin hormone participates in calcium and phosphorous metabolism and help to increase the activity of osteoblasts. Osteoblasts are cells that help to make bone. Parathyroid hormone also helps to regulate the activity of osteoblasts.

Sex hormones at puberty also stimulate a growth spurt.

There are a number of diet related factors that impact on bone growth. To ensure your child has the best chance of growing to their optimal height, the following minerals and vitamins should be available in adequate amounts in your child’s diet (and of course your child’s gut needs to be well enough to ensure that these minerals and vitamins can actually be absorbed and utilized by the body).

•Calcium & phosphorus – directly related to bone growth

•Manganese – helps prevent loss of bone

•Vitamin C – for collagen formation (collagen forms part of the bone matrix)

•Vitamin D – If you don’t have sufficient Vitamin D, then you can’t absorb calcium from food – calcium is required for bone growth and strength

•Vitamins K and B12 – for protein synthesis – protein makes up roughly 50% of the volume of bone and one third of it’s mass.

If you are going to supplement your child with any vitamins and minerals, please remember that our bodies are complex and vitamins and minerals work together.
Sometimes if you add a supplement, you need to add something else to make sure the balance in the body is correct. Some supplements are not suitable for some people depending on their medical history and other medications they may be taking. And some supplements can actually interfere with uptake of other supplements (for example calcium and iron should not be taken at the same time of day, because calcium interferes with iron absorption). So to be sure you aren’t going to do any harm, and that you aren’t going to be spending money on supplements that won’t be absorbed properly, please consult with a professional. I’d suggest that a naturopath ,a nutritionist who has studied nutritional medicine or a biomedical doctor will probably the best practitioners to offer support in this area.

As always – this is just information from an interested mother – I’m not a doctor, I’m not providing advice or suggesting what you should do. Just sharing my own understanding on the factors that are related to growth.

I know this post covers a few different areas, and may be a little technical in parts. But I think it can be good to take a wider view when looking at our (complex) kids, so we can have the best chance of figuring it all out! +

Fine Motor Skills – Pre-Writing, Writing and Typing

A little something different today…a link to a video where I talk with Sophie’s OT Kellie about Sophie’s fine motor skill development.  Hopefully there are some tips and tricks in there that might assist other parents to support their children in their journey towards writing and / or typing.

The video can also be found on Kellie’s Facebook page called Ace Parenting…she has heaps of awesome tips and tricks on there about child development 🙂

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….

IMG_0235.jpg

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

tiger

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 😊

 

tiger

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

speech

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.

spewech2.jpg

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

fish

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.

enough

Early Childhood Development and Special Education

Sophie school

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