Tomorrow we are at the hospital with Esther
A routine appointment
When Esther was six years old
I noticed that her body was beginning to change
This was around the same time I became certain
That Esther was dyslexic
Lots of things about Esther were worrying me
I went to the GP and asked for a paediatric referral
The appointment we needed took a considerable time to come through
Esther was seven by the time she was seen
We were worried that she had precocious puberty
This is more common in children born prematurely
Esther and William were born at 27 weeks
So we had genuine cause for concern
The specialist consultant was wonderful
She was kind and caring with Esther
Efficient and thorough
Esther had to undergo a range of tests
Including hormone bloods, scans and a growth scan
We found out that Esther actually has something called
Premature Adrenarche
Esther obviously notices her body changing
And now that she is nine understands that this happens to everyone
But when she was six it was frightening
More so for me perhaps than her
Esther is incredibly brave
She takes things in her stride
She is sensible and considerate
She is not a person that panics
Like me
She is much more like her Daddy
Tomorrow the hospital will check that Esther’s development has not speeded up
We were all a bit worried when she shot up in height
But her growth seems to have stabilised now
Tomorrow I am going to be talking to the consultant about Esther in general
Esther has been diagnosed with dyslexia and dyscalculia
The specialist who assessed Esther also thought that Esther may have
Attention Deficit Disorder (ADD) and may be on the Autistic spectrum (ASD)
We are hoping that the hospital consultant will be able to refer us to an Educational Psychologist
To get Esther assessed and to help us put a plan in place for Esther’s education
And for her life
We need to know what support is available for our little girl going forward
And how we can best help her at home
I find Esther’s struggles heartbreaking
She is such a beautiful little girl
She has a wise and gentle soul
She is kind and caring and thoughtful
She loves helping others
She is patient
She is funny
She is the peacemaker among our children
And the one they all look up to
She often leads their play
But also likes to step back and enjoy quiet time
She loves drawing and fiddling with little toys
She has lots of collections of tiny treasures
She can often get lost in her world of imaginary play
She also loves messy and sensory play
Esther loves singing and has a lovely voice
She plays the piano but because of her needs finds it incredibly difficult
We are lucky to have found a teacher who is very patient
And happy to adapt normal teaching to help Esther’s confidence
They have adapted what they do together so that Esther is able to feel successful
It has been hard for me to accept that she does not learn at the rate that others do
She will probably never take a piano exam
She just has not got the focus and attention span
And she finds reading music very hard
We are hoping that by combining piano with singing
She will learn enough to accompany herself and others
Singing songs from musical theatre
Esther loves the theatre
She often says that she would like to be an actress
She is not a natural performer though I think with work she could be good on stage
If she can get over her awkward shyness
I take Esther to the theatre as much as I can as she loves to go
And learns so much from the experience
Esther has a really good long term memory
But a poor short term / working memory
She finds learning lines a challenge
Though she does it anyway
She is desperate to have a big part in a show!
Esther loves stories and poems
She loves Harry Potter
Esther finds reading very hard
She has a reading age of 10 which is amazing
Reading words is not her problem
It is focusing on what she is reading
For any length of time
She struggles with tracking so
She misses out words
She reads approximately what the text says rather than exactly what it says
She misses out lines
Rereads lines
She gets tired very easily
And it is just so very sad to see
As her comprehension is amazing
Her love of stories is so strong
She should be a voracious reader
Diving into new books and wandering through story after story
But she just cannot
And I worry for her and my heart hurts for her
Reading is such a gift and Esther very rarely chooses to read a book
She starts books and never finishes them
It is so sad
Esther has lovely neat writing
But she is a reluctant writer because she finds it so hard
She really struggles with spelling
And because she likes to be good and right
It really affects her confidence and her willingness to write
Even when you tell her not to worry about spellings
She still frets about every word
Esther loves to dance
She is rather clumsy and has to work very very hard at dancing
She cannot remember long sequences of steps
And she struggles to perform when not able to copy her teacher
Saying all of that
She has passed two ballet exams
Each with a Merit
She dances for hours each week in her own classes
And supporting the little ones in their classes
She is improving slowly and her determination to continue dancing and perform in shows
Is both breathtaking and inspiring
This little girl of mine is resilient
She is smashing glass ceilings every day
Born at 27 weeks she continues to fight every day
I could not adore my eldest daughter more than I do
This year is an important one for her
We have to think about her future
What is best for our daughter going forward
At the moment all our children are educated at home
We always thought that they would go to secondary school
But now we are not so sure
Esther has such a wide range of complex needs
I am not sure that school would be able to meet them
Her dyslexia assessment reports recommends that Esther have 25% extra time for all assessments
And has a scribe for written examinations
We have lots of thinking to do
Together
And difficult decisions to make
At the moment though
Esther is refusing to think about secondary school
She is holding out for her letter from Hogwarts!
I am hoping that tomorrow’s hospital appointment
Will lead us to an Ed Psych evaluation
To confirm or rule out ADD and ASD
Attention Deficit is not a label I ever wanted Esther to have
But as she gets older
It is becoming more apparent
That she has many of the symptoms of this disorder (I hate that word)
She struggles to focus
Even on things that she loves
She is impulsive
She switches her train of thought suddenly and without warning
She changes conversation topics often and suddenly
She struggles with organisation
She dillies and dallies and daydreams
She loses time
I also see hints of ASD
It presents very differently in Esther than in William
I think because their personalities are very different
As much as anything else
But the traits are there
Over a year ago Esther and I decided together that we would share her journey
To try and help other families like ours
But then we didn’t
I have been wondering if it is all too personal to share
But actually I think it is important
I think it so important for parents and children
Going through a journey like ours
To know that they are not alone
To know that what they are thinking others have thought before them
Battles they are fighting have been fought before
Lost and won
I know that it helps me to know that we are not entirely on our own
It has taken me this past year to be able to think rationally about Esther’s life
To allow panic to subside
To begin to put plans into place
To be told that your daughter will need one to one support at school
That she will not sit a traditional GCSE
But will need extra time and a scribe
It is really hard to hear and accept
To process
Things do start to click into place
I have begun to understand why Esther finds the piano so hard
Why no matter what chapter books I give her she will not read them
Why she listens to Harry Potter over and over and over again
Why she finds making and keeping friends so difficult
Why she is so clumsy and accident prone
Why she obsesses about things
But also
Why she is so incredibly good and patient with younger children
Why she is so good at seeing the bigger picture and solving problems
Why she is good at drawing and painting and designing yet finds writing such a struggle
We still all have lots to learn
Tomorrow is a time to ask questions
Hopefully get some answers
Choose a direction and start making some headway
To get the help, support, resources that our little girl needs
2020 will see Esther and William turn 10
Born at 27 weeks and about to turn 10
Just WOW!
Esther in NICU
A dancer, a singer, an artist
A sister, a daughter, a cousin, a friend
A reader, a writer
An animal lover
My hero
Our beautiful Esther Grace
This is your year x
Thank you for this. Your honesty has touched me. As a Mum of a daughter with a ‘disorder’, who is so wonderful in my eyes in so many ways, and such hard work in others, but this label does not seem to fit. We have turned a corner this year with some wonderful support and it feels like I have been given permission to love my daughter again, not just to worry and wish things could be different
Oh Amy, thank you x I hope that we can get Esther the support she needs and the support we all need to do our best to help her. Worry takes over everything doesn’t it?