Therapy – When Enough is Enough

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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.

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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.

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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.