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.

Endings and Beginnings

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The first few years are a nightmare..you’re scrabbling, reaching, trying to find answers, researching, filling in endless paperwork, trying to find a good team to support your child. Sleepless nights, endless questions, insecurity, doubt and fear. Then you slowly get it sorted. You find the right therapists, doctors, daycare. You find support networks, and answers. You stop having to struggle and advocate all the time. You stop fearing so much for your child’s very life. And you feel like you have finally got it worked out. To some extent at least. You know challenges are yet to come, but they start to feel far in the future.

Then life happens. Your child grows a little older, they outgrow “early intervention”, it is time to start school, leave behind the secure cocoon you have woven for them. Old challenges are overcome, and new ones have arisen. And you find yourself on quicksand once again. All those wonderful supports you had, slipping from your reach. All that hard earned knowledge, now outdated and needing a bit of an upgrade. Time to start over. Endless reams of paperwork, again. Interviewing potential schools. Moving house. Trying to find new therapists. New doctors. New teachers to support and guide your child. New interventions to assist with emerging issues. And, momentarily, fear sets in. Echoes of that early time of fear and uncertainty come to haunt you in the early hours before dawn.

You find yourself afraid, feeling inadequate, and unsure whether you have the emotional and physical reserves to do this..again. And then you pause..and breathe..and realise that despite the fear, the tiredness, and the (yes) resentment you sometimes feel at having to do all of this..that you are so much better equipped than you were the first time around. Now you have the guidance of others to call on, from having found support networks. Now you have confidence to back you up..you have done this before, with far less knowledge at hand, and when you were far more depleted. You can do this.

And then, the realisation of how far both you and your child have come in such a relatively short time dawns on you. It is, really, a miracle of sorts. It doesn’t dismiss the effort or exhaustion of having to once more educate a new team about your child’s strengths and weaknesses. But it does give you a confidence you didn’t have before, A tentative confidence to be sure, a flickering flame, not a blazing fire..but far more confidence than you had five years ago, when you battled the system to be heard. Now you know that you have a voice, and that you will not be defeated. Now you know that you can find your way through the maze.

To all parents going through change, special needs or not, know that you have what it takes. A parent’s love can overcome many obstacles.

Today Sophie had her last session with her occupational therapist, Robyn, who she has been seeing for three years..since she was two years old. And last night I shed a few tears as I thought of this chapter of Sophie’s life being over. And as I watched her carefully and painstakingly writing a thank you card for Robyn, and painting a “dolls’ house” to give to Robyn as a gift. Because, back then, I never could have imagined that Sophie would be able to do this..

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Next month Sophie starts prep. Far from where we now live. Entailing new teachers, therapists and supports. And I have been overwhelmed. And anxious.

But on reflection, I see the fears are in me, not in her. I know now that my beautiful, brave, joyful and hardworking little girl will continue to amaze and surprise me. And that I must NEVER underestimate her gifts and her potential. Sophie is an amazing teacher…reminding me each and everyday to never underestimate anyone, and to never give up. And so I step out and step up, knowing that if my tiny little angel of a girl can face the world with courage, I can do no less. Onwards we go 🙂

Motor Skills and and Neurological Development

Well it’s been a while between posts.  I lost my first true adult love and dear friend of 20 years just six weeks ago.  An early and completely unexpected death.  RIP Jimmi, I know you are watching over us.  We have also been busy getting our house ready for sale, and I’ve returned to work after a loooong time off.  So I haven’t been up to writing  until now.

And once again I’m going to mix it up…I had intended to write about Sophie’s speech development.  But Sophie attended her first ballet class a few weeks ago, so I’m moved to write about her motor development. My blog, I can change the rules :).

So..here we go…

Right from the beginning, it was evident that Sophie had some differences in her motor development.  She didn’t have a grasp reflex or a rooting reflex. She felt very floppy as a newborn and infant.  It was like she was sliding through our arms when we tried to hold her.  She always needed to be held and supported with two hands…no holding the baby in one arm while getting on with household chores for us!

She never curled up into that cute fetal position that babies tend to love.  Here is our attempt at one of those cute curled up baby photos, when she was just a few weeks old..fail!

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I took her to a baby massage class, and while the other babes relaxed in bliss, she squirmed, struggled, cried and was quite unhappy with the  whole rigmarole.
She made lots of jerky, flailing movements with her arms and legs, which while cute and endearing, I recognised as not being “normal”.
She didn’t hold her head up until around four months of age.  For tummy time, we placed a rolled up towel under her chest, as she had no apparent desire or motivation to lift herself up. She had head lag until she was over a year old (usually resolved by three months).
She retained her Moro (startle) reflex until she was more than 9 months old.  This reflex should usually disappear by 4 to 5 months.  Retained reflexes, like missing reflexes, are an indicator of physical delays.
She was too floppy to sit  in a bumbo chair or high chair unsupported, even at 6 months old, so we used to prop her up with folded towels all around her, so she could “sit up” to eat.
I couldn’t ignore her physical differences, so from very early on I started “googling” to try to find ways to help.  I have no idea where I found the time or strength to research, given the sleep deprivation, feeding issues and other concerns.  But I suppose as mums we do whatever it takes to give our child the best start, even when we are beyond desperate for sleep and respite.
From when Sophie was about two months old, we attempted to get her more comfortable with massage.  As we had heard this was good for training the brain, and assisting with motor integration. It wasn’t something she relaxed into, so we took it slowly.  Just a small belly rub during nappy changes.  Or rubbing her arms or legs when she would allow it.  Some lights stroking, some heavier stroking. We started to do “crossover” exercises with her when she was about three months old.  So each time we changed her nappy, we would take her left arm and touch it to her right foot, then take her right arm and touch it to her left foot.  Rinse and repeat.  We started to do joint compressions at bedtime.  All in an effort to increase her comfort with touch, help build neuro-connections and give her as many sensory experiences as possible.
At least four or five time a day we would take her little arms and gently try to pull her up to sitting, supporting her head as necessary.  Trying to help build her abdominal and neck strength.  Even now, at nearly five years old, she rolls onto her side to get up from lying down, rather than having the strength to use the “sit up” style form of moving from lying to sitting.
While some of her physical milestones were (and still are) quite delayed, in others she managed to “make it” just within the “deadline”.  Sophie sat at 8 months.

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She crawled at one day before nine months (the hospital had advised us to bring her back if she wasn’t crawling at nine months…she must have known..I’msure she was sick of hospitals by then!).  She pulled to stand at 9 months, started cruising at 10 months and walked at 14 months.

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While she achieved a number of milestones (just) within the “normal” timeframe, her physical weakness was obvious.  She was wobblier than other kids, more prone to falling, had much less strength and endurance.  Her gait was unusual, and for several years she would hold her hands up high for balance.  Even now she doesn’t swing her hands in the natural “reciprocal arm swing” (hands opposite to the feet) way that comes to most children by the age of about two or earlier.

In regards to physiotherapy…we had a few “traditional” sessions from when she was about seven months old.  These were helpful in terms of identifying her specific delays, addressing my concerns about her flat feet (since resolved) and her spinal curvature (xrays showed no spinal abnormalities, so we knew it was a core strength issue).  She was officially diagnosed with low tone and hyperflexible joints, so we had a definitive explantion for her physical “weakness”.

The public health system could only offer sessions sporadically, however.  And we noticed the exercises they did with her were largely things we could do ourselves, with a little bit of research, and some dedicated effort.  At that time, Sophie had 19 medical specialists and was attending physio, OT and speech.  Our lives was consumed with doctors appointments, therapy, and driving to and from all of  those appointments.  I wanted her to have time to just enjoy the  world. To be a kid, not a patient.  So we decided to drop physiotherapy, and replace it with family activities that would help to develop her gross motor skills.

We took her to Gymboree.

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 We took her to playgrounds.  All the time.
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We went camping. Often.  Camping was especially great for her once she started to be able to walk, as the different textures and gradients of the environment challenged her skills in balance and proprioception.  Hills, grassy places, sandy spots, rocks, pebbles, tree roots and twigs.  Puddles . Creeks and water holes.  We noticed a definite “leap”  in her physical abilities each and every time we took her camping.  So we took her, even when packing the car seemed impossible.  Even when the mere prospect of leaving the house filled me with dread. We had always loved camping, but the exhaustion of sleep deprivation certainly didn’t make it an appealing idea in the first couple of years.  Luckily the rewards always outweighed the effort, and I have no doubt that all of Sophie’s camping experiences have not only improved her motor skills, but also helped her with her sensory issues and socialisation.
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Frank did a lot of work around proprioceptive awareness from when she was only a couple of months old, including rocking her from side to side, lifting her high into the air and and lowering her low to the ground, spinning her, rocking her.  Frank carried her in a backpack before she could hold herself up, tucking her in tightly with towels.
Once she was able to sit, we bought her a “bouncy tiger” and she sat on that for all meals, requiring her to continually shift balance and develop her core strength.  Once she could stand with support we bought her a mini trampoline with a handle, and she was only allowed to watch TV if standing on the trampoline.  Even before she could bounce, the gentle movement of the sprung base required her to continually readjust her balance.
At two years of age Sophie, thanks to the financial support of my parents, we were able to start Sophie with an excellent private Occupational Therapist, Robyn Simms.  Robyn worked (and continues to work) on fine motor skills and play skills with Sophie, but she also worked on her gross motor skills.  Thanks to Robyn our repertoire of “tools” with which to help Sophie grew.  We started to sit her on a Swiss ball, holding her by the hips, and moving the ball from side to side.  As she grew in confidence, we would lie her on her tummy over the swiss ball, tipping it one way until her head nearly touched the floor, then pulling it back until her feet were nearly touching the floor.  As her strength grew, we held her by the feet and put an object just out of reach, then rolled the ball forwards so she could reach out to grab the toy.  When she was strong enough, we progressed on to holding her feet in the air while she supported herself on her arms, and moved forwards  “wheelbarrow” style.  We used a scooterboard to develop her core strength.  We bought mini three wheel scooters of different heights, and without pedals, requiring her to develop the strength in her thighs and core in order to propel them forwards.  We bought three second hand slides of varying heights and angles, to help her with climbing and overcoming her fear of sliding.  We installed a sandpit in the backyard, a swing, a climbing cubby and a rocking toy.

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I made sure that she carried anything she was strong enough to carry, to develop her overall strength.  Sometimes she was reluctant and fearful to try new physical challenges.  “All done now” was a phrase she used often. But despite her trepidation, she would always give it a go in the end.  She showed so much courage and perseverance.  Those are qualities I admire in her so much, and qualities that I’m sure will stand her In good stead throughout her life.

At 33 months, she  was finally able to jump with two feet, after working on this for more than a year with her occupational therapist.  This  is a skill that is usually achieved at about 18 months.  What a day of joy and delight it was for us all!

Developing her physical skills and confidence was (and continues to be) a team effort.  My mother took Sophie to her occupational therapy sessions, which she videoed so we could watch.  Sophie was staying with my parents for two days each week, and they diligently worked with her.  We incorporated “physio exercises” into Sophie’s day, each and every day, but under the guise of “play”.

At the age of just three and a half she started horse riding with Riding for the Disabled…she was the youngest rider the centre had ever had. Thankfully the costs for this were low.  It equated to less than $20 per session due to the wonderful volunteers at Crowson Park RDA, who work for free, and the fact that her small respite allowance extended to covering the costs associated with caring for the horses etc.) Far cheaper than the $90+ per session that her other therapies cost.  She screamed her way through the first few sessions, but thanks to the gentle care of the volunteers she soon lost her fear and began to thoroughly enjoy her sessions.  Hippotherapy (horse riding therapy) has helped tremendously with her poor posture, curved back, low tone and sense of proprioception.  It has also significantly increased her confidence and willingness to try new things.

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 Now, at nearly five, Sophie is still more physically frail and clumsy than other kids her age. But she is accomplishing amazing things.   She still requires supervision to walk up stairs…but she can do it…and recently started to do it with alternating feet!   She has overcome her fear of “wobbly bridges” found in most playgrounds.  Recently she overcame her fear of jumping castles, and now delights in the joy of bouncing away.  Her awareness of her body in space is becoming so much better. She can climb up ladders, and enjoys slippery slides.  She loves using the rocking toys in playgrounds.  She doesn’t scream in fear when other kids come near her on the playground equipment (kids can be rough, and when she was younger she was always getting pushed over and walked over..now she has the confidence to move out of the way, and even on occasion to push her way through to the  front! ) And about four months ago she FINALLY started to bounce along and try a few “dance steps” when watching the interactive song and dance parts on playschool!
She has come so far that we have finally been able to enrol her in a ballet class.  Something she has been asking to do for many months.  Just six months ago she found it almost impossible to copy basic movements like a turn or a step to each side.  A few weeks ago we proudly watched while she followed the teachers instructions through an entire thirty minute class. Perhaps not always in time, perhaps not quite as gracefully as the other kids.  But she was delighted, and so were we.
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In terms of Sophie’s challenges, her gross motor development is currently the least of our concerns.  That’s not to say she doesn’t have delays, and that continued intervention is not required.  It’s just that in the grand scheme of things, we know she will be “okay” in this regard.  She may not ever be the fastest swimmer, or the most graceful dancer, but she has great mobility…good enough that it no longer interferes with her capacity to join in on the playground.  She can enjoy the delights of trampolines, and slippery slides, climbing, and playing “can’t catch me”.  And really, that’s what matters.
Her gross motor skills may become a higher priority again in the future. At the very least, I’m guessing there will be a conversation or two as she gets older, and begins to notice that she is not as physically adept as the other kids.  And children with Kabuki syndrome are prone to developing terrible joint problems, particularly with their knees and hips, often requiring surgery. But that may or may not be in store for Sophie, and there is no point worrying about it right now.  In the big picture, her gross motor development is an area that we have allowed ourselves to relax about.  Sure, we need to give her extra input, she needs more practice to master physical skills, we can’t totally “take our eye off the ball”.  But we are blessed that she is as physically able as she is.  And we no longer expend so much energy on this area of her development.
We have been incredibly lucky in this regard, as many children with Kabuki Syndrome take much longer to get where Sophie is.  Many don’t walk until three, four, five or older.  Some require orthotics or other physical aids such as walkers.  Some are in wheelchairs.  We are tremendously grateful that Sophie has had fewer struggles with her gross motor development than many of her Kabuki peers.  And knowing how lucky we have been makes us all the more excited and delighted when we see other “Kabuki Kids” start to sit, crawl, walk, dance and play.
Overall, while some areas of her motor development are still significantly delayed compared to “neurotypical” kids, she is doing fabulously.  She may be clumsier than the other kids.  But now when she falls, rather than tears or hysteria, she just laughs and gets straight back up again.  A wonderful lesson for me to take on board…when you fall..laugh and get back up…keep trying, and never give up!  Thank you baby girl for teaching me…I hope I will take your lessons on board sooner rather than later.