Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697631336172.pdf (Australia)
Our Journey of Discovery with Primary Language Disorder, Let’s Talk and the Child Association Outreach Service My name is and I live in South West Queensland at “Claverton”, a sheep and cattle property, 125 kilometres south of Charleville on the Mitchell Highway.

My husband 8, born 27/10/2001; and I have three children, 2 years.

7 and My daughter seemed late with her language development and, after seeking a referral when she was three; we visited our local Speech Therapist in Charleville.
at this time could not put more than a couple of words together although she had quite a large vocabulary of naming words.

I secretly hoped that this was only a delay, however deep down I knew that there was more to it; but she was our first child and I had no one to compare her to.

Our local Speech Therapist suggested we attend a Child Association Outreach Service seminar to be held in Charleville.

Mostly professional people attended plus a few parents.
I found it an extremely informative session, however I did not follow up with undergo other assessments.

We them immediately as we began having travelled to Toowoomba for a hearing test that proved normal.

The Speech Therapist also suggested she have an Occupational Therapy assessment and a Physiotherapy assessment.

had a tendency to walk on her toes and she also made an unusual grimace with her face and hugged herself whenever she was excited.
I later learned that this may have been her way of expressing herself when excited because of her limited language.

The Speech Therapist was unable to complete a lack of language.

comprehensive speech assessment at this time because of and I began driving to the Charleville childcare centre (a round trip of 250kms) every week so that they could mix with other children.

They loved this.
They loved this.

Members of the Speech Unit at the hospital were also very helpful and visited at the child care centre, although she also continued to have a one on one session with the Speech Therapist.

We continued our visits to our local speech service, but availability was only in blocks of a few weeks at a time.

There were so many children in need and not enough staff to go around.

started kindergarten in 2005, though still only putting a few words together in a sentence.
The day she graduated from Kindy I told her that this would be her last day there and that she was to go up when asked to receive her certificate.

She got very upset, and went inside and would not come out for the presentation.

was meant to start Preschool the next year, 2006, but there was no Preschool at the Wyandra State School 25 kilometres from Claverton, our nearest school, so I decided that she would do Preschool via Distance Education.
There were no places left via Charleville SDE (School of Distance Education) so we approached the Brisbane SDE.

When she was accepted I was thrilled, but it proved very difficult for to communicate with her teacher, as this was over the telephone.

We battled on for a while but finally we had to stop.

It was simply too hard for her and for me.

I tried not to worry, she could do the “new” Prep year in 2007, instead of Year 1 and that would give her another year to develop.
I still had not realized how slow her 1 Prevalence of different types of speech, language and communication disorders and speech pathology services in AustraliaSubmission 170 - Attachment 6 language development was compared to other children her age.

My inexperience kept me hoping it would right itself given time.

I applied for to start Prep at Wyandra State School.

This was the first year roll out of Prep to replace Preschool.
There were no problems with this; we simply had to submit reports from various professionals indicating that this was the best approach for Technically she should have started Year 1, but there was no way she was ready.

started Prep in Wyandra in January 2007.

She was five years old and still only putting a few words together in a sentence.

Wyandra State School was a one teacher school from Prep to Year Seven.
There was a relief teacher for one day a week so that the Principal could do administrative duties.

In that first year I think there were approximately thirteen students; all were kind and patient with but her teacher found it extremely difficult to teach her.

She was the only Prep Student.

I was amazed though by how quickly she learnt to talk in that first year at school.

She was a great mimic and would repeat things all the time.

She would come home and say to me, “Get to the point!
Get to the point!” I did not realize till later where this was coming from.

I must also point out that during this period the Charleville Speech Therapist had resigned and was not replaced for over twelve months, so our support there ceased and I still had a long road to travel.

At the end of and I had no idea yet that her 2007 Prep year would zoom through her Year 1.

Naively I hoped that this would happen, so I sat back and relaxed speech was improving and she was using longer for a while.
After all, sentences - everything was coming together.

teacher told me that she felt that During 2008 student numbers at Wyandra varied and at one point reached 24.

A few who was now weeks into 2008 first term the Wyandra Principal asked me if 6, could be assessed.

I cannot remember being told what sort of assessment she would be getting.
I assumed it was a speech/language assessment and on arriving at school automatically signed a form of permission without really reading it, thinking it also was just a speech/language assessment form.

Later I received a telephone call from the school asking if I could come in early to so that we could discuss the results.

I readily agreed.

That afternoon collect I received the worst news that I have ever received in my life.
I was told very gently by the Guidance Officer who had administered the test that it was considered that was Intellectually Impaired or II as they called it.

I think other members of the school staff were as shocked as I was.

Also, for the school to get funding to help her I would have to verify this assessment.

A friend and staff member spoke with me outside the school that afternoon advising me that I did not have to accept the assessment and should get a second opinion.

I cried all the way home.


My first thought was of the Child Association and the Glenleighden School who were intimate with such problems in children When I arrived home I rang my Mum and cried again.

This was the beginning of an extremely difficult time during which my family has gone through enormous emotional upheaval.
I absolutely could not accept that my daughter was intellectually 2 Prevalence of different types of speech, language and communication disorders and speech pathology services in AustraliaSubmission 170 - Attachment 6 impaired.

She had difficulty with language, but she did not have trouble learning or problem solving.

If I didn’t accept it though would she receive any extra help at school and would she receive the right sort of help?

I met with the Guidance Officer and she tried to explain things to me.
I told her that I did not know that my daughter had been given a WISC Intelligence test.

I thought she was receiving a speech/language assessment.

She seemed surprised at this and told me to take time making my decision.

I wanted helped as quickly as possible, but I did take some time and eventually decided that I would accept their assessment.

What did a label like II matter?

We knew that was not really like that, so I told her teacher verbally that I would verify the assessment.
given a comprehensive speech assessment, so But I had also decided to have I wrote to the Glenleighden School asking for their help to prove that my daughter was not II.

I received an answer and was asked to fill in some forms and to contact their new consultative branch that was being set up called Let’s Talk.

I made an appointment for the June school holidays.

would have a comprehensive speech assessment and an assessment by a Psychologist, all at Let’s Talk.
At the end of second term the Principal at Wyandra told me that the verification was ready for signing.

Naively I hadn’t realized that I needed to sign anything when I told them earlier that I would verify Now I told them we were close to having another assessment done, so I wouldn’t sign anything yet.

had her first test with the Psychologist, who told me that We travelled the 800 kilometres to Brisbane, rushing to keep our appointments.
while only being average, was definitely not intellectually impaired.

The psychologist also told me that should never have been given such a language-loaded WISC test, and that she was considered too young to sit such a test.

The minimum recommended age I think was seven; was about six and a half at the time of the WISC Test, and a very young six at that.

Later I excitedly shared this news with the family.
Her Speech Assessment was the following day, but I couldn’t get the results until early the next morning, so I arranged to meet with Lets Talk then.

At this meeting had Primary Language Disorder, but just exactly what this they told me that entailed didn’t sink in immediately.

I returned to our family, little realizing what the assessment indicated and that I might need time to think about it.

All I could think of was that she was not intellectually impaired.

Did I cry?
Did I cry?

Probably, I cried a lot back then.

I was certainly in a daze after the test results.

When my husband, asked about the meeting, I simply said, “Oh, she has Primary Language Disorder, we will have to discuss it later.” We then got in the car and headed for home.

The report followed us home by mail and I passed it onto the Wyandra State School who then passed it to the Guidance Officer in Charleville.
I was told later that was not intellectually impaired Education Queensland would not accept that and that the assessment of II would remain.

I was caught between a rock and a hard place; but I was determined not to verify her II.

This meant that Education Queensland would not provide the extra help that she needed.

I spoke with Lets Talk about this and a letter was written on my behalf explaining to Education Queensland was not considered II.
Also that language-loaded tests such as the that 3 Prevalence of different types of speech, language and communication disorders and speech pathology services in AustraliaSubmission 170 - Attachment 6 WISC test were not considered best practice on children with language problems.

It was also suggested that a child of 6 and a half years was too young for such a test.

This all seemed to fall on deaf ears.

Nothing was done to help and I became increasingly frustrated.
I wrote a letter to the person in charge of the Wyandra State School in Roma office and sent a copy to his boss in Toowoomba.

I immediately received a letter of acknowledgement.

Also a teleconference was quickly arranged between the bosses in Roma, Lets Talk and the Wyandra State School to try and resolve the issue.

Yet nothing was achieved.

I then made a most painful decision.

I decided we would leave Wyandra State School and try a different school.
I considered a number of different options including the local Charleville Catholic School, the Charleville School of Distance Education and the Glenleighden School in Brisbane, which specializes only in Primary Language Disorder.

I had applied out of frustration to the Glenleighden School not really thinking we would get accepted.

When we were told had been accepted I didn’t know what to do.
We had also had discussions with the Charleville School of Distance of Education who happily agreed to work with Lets Talk in an effort to help would receive extra help from the school even though she had us.

That way not yet been verified.

I knew in my heart that, academically, going to Glenleighden was the best thing for but it meant such upheaval for our family.

I would have to move to Brisbane while my husband stayed at home.

We would only see each other once a month or so.


I would practically be a single mum.

I even went to the extent of asking my parents to move with me from where they lived in Charleville.

They were very supportive of us, trying to do anything they could to help.

I looked for houses to buy; to rent etc.

The simple fact was that we really could not afford it, financially and emotionally.

I felt sure that my family would not survive as a unit if we went down this path.
I had phone calls to Vikki Rose Graydon, Principal CHI.L.D.

Association and the Glenleighden School seeking advice.

Vicki was could go to Brisbane later if we fantastic.

She said we could take our time.

chose.

We decided to give Distance Education a try.

I could not believe I was going down the path of doing school at home.

I had always said I would never do this.

was in Year 2 and I employed a Home Tutor and we started at the beginning of 2009 with Charleville SDE.
had so much lost ground to recover.

In the first six months we had three Home Tutors.

The first two left because of personal family problems.

This was difficult for the children; they needed consistency.

Each time we lost a tutor I questioned my decisions, should we have moved to Brisbane?

was doing her Prep year.

Wendy, our third Tutor, has been a huge help to the children.

She has been with us since June 2009.


It took her some time to understand the Home Tutoring process, as she’d never tutored before and now had to do so with Distance Ed.

She has gained is now doing much better.

While she may never keep up with her peers she is always making progress.

She tries her hardest most of the time.

The teachers at Distance Ed have been enthusiastic and most helpful in assisting Wendy.

trust and she understands how learns.


Throughout this whole process I have had Lets Talk there to assist us, and when possible we travelled to Brisbane in school holidays for therapy.

They have also 4 Prevalence of different types of speech, language and communication disorders and speech pathology services in AustraliaSubmission 170 - Attachment 6 helped by working with Charleville SDE to modify the language in papers.
Incidentally it has worked out that has more trouble with her mathematics than the language papers and we have had to modify the papers to help her keep up.

It will all be an ongoing process as Primary Language Disorder is not curable.

This year has been a good year for Wendy has encouraged both girls to be community aware and they successfully participated in various social events, such as the Charleville Eisteddfod and fundraising for children in crisis.
We have also started using Skype to do E-therapy.

The internet is such a huge part of the schooling process with Distance Ed that it was just a natural progression.

We had to upgrade our Internet connection from the satellite to wireless to get a faster download speed.

While it is not perfect, it means can access therapy each week from Lets Talk without leaving our home.

I now cannot imagine life without it.

Belinda, her Speech Pathologist, is now able to email us homework for her to do.
She is also able to work with Wendy and help with any areas of the curriculum that is having trouble with.

Another major break through has been that Education Queensland seems finally to have accepted the Primary Language Disorder diagnosis and will soon be verified.

While now it is only a formality, as she has been receiving extra help from Distance Education, it is an important win for all children who have been misdiagnosed.
I urge other parents who have disagreed with any diagnosis of their child to follow up with second opinions.

It may be a painful experience but the wrong diagnosis could mean incorrect tuition for your child and that could be a greater disaster.

(2010) 5 Prevalence of different types of speech, language and communication disorders and speech pathology services in AustraliaSubmission 170 - Attachment 6