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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Pink Tigers, Anxiety and ASD

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

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

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

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

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

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

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

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

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

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

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

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

And the tiger in my house is a pink one 😊

 

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