STRIVE member tells their story

Hi my name is Kylie and this is my little boy Ethan.



We started our journey when Ethan was about 3. He was not talking and dragging us to show what he wanted. Everyone kept saying he will talk soon, he is the third child, he’s brothers are talking for him. Finally after about 18months of going here, there and everywhere we went to a Psychologist and Ethan was diagnosed with PDD NOS. Ethan is progressing really well we have a speech therapist who comes to our house and he is now sitting really well for the therapy. We also like most of you, do Occupational therapy and are working on Ethan’s fine motor skills as he’s gross motor is not too bad. Ethan attends Telarah Early Intervention Unit twice a week and really loves it as well as Pre-school two days a week. We are transitioning Ethan to main stream in term 4 of this year and hopefully it will go ok, Who Knows? This is our story so far and I would like to say keep smiling and be positive and you will see results like we are with our little E.


Kylie Whiting pictured with son Ethan
 



PDD-Pervasive Developmental Disorder MY STORY

This story is about my son’s disorder. How I came to find out he had this disability, what
has been done to help, and also how I have felt through this whole process.
Early 2004, I was approached by my son’s pre-school teacher as she was concerned
Lachlan was not doing so well in the academic and social side of things. She thought it
was a good idea, that we have him assessed.
At this time, I was like “Oh god, what’s wrong with my son?” It was a huge blow to a
mother’s heart, to hear things were not so good.
The assessment went ahead, although could not be fully done, as Lachlan did not want
to co-operate. I’m not sure if Lachlan found it too hard to comprehend, but they couldn’t
finish the whole test. They thought the best for Lachlan would be to attend an S.E.D.U,
which is a Special Education Department Unit. This would help with his learning and
comprehension of learning and daily happenings that would occur at school and in his
life. He would attend the S.E.D.U for the 1st 2 days of the week, and also still attend
pre-school the last 2 days of the week.
Children also attending the S.E.D.U would be children with Down’s syndrome, Autism
etc.
So…. Lachlan attended the SEDU in 2004 and 2005. He repeated a 2nd year at preschool.
Also in this time, we were seeing many different specialist’s through the public health
system. Speech assessments, hearing tests, blood tests etc. I knew Lachlan was NOT a
quick learner, and maybe he was a little behind but I never thought he would have a
disorder or disability.
Near the end of 2005, it was decided that Lachlan would need extra help at school, but
diagnosing him would be hard. He did not have a certain number of characteristics, of
just 1 thing. A decision by the public health system would be to let him go to main
stream schooling and see where it went from there.
Mid-year 2006, Year 1, I would have to get a letter from his teacher, and certain
questionnaires filled out about how Lachlan was doing. Well his learning was no going
so well, and the Guidance Officer was involved. This was such a long process, my
husband and I had been dealing with this since early 2004! And finally we were hoping
to get some answers.
Thanks to a FANTASTIC teacher and a WONDERFUL guidance officer, we finally came to
a diagnosis which was Pervasive Developmental Disorder.
PDD is a term referring to a couple of disorders characterized by: impairments in social
interaction, impairment in verbal and nonverbal communication, and a restrictive,
stereotypic pattern of behaviours. There is a large amount of differences in symptoms
among people with PDD and again a large amount of differences in how severe these
symptoms are. There are a few disorders that fall into this category these are Autism,
Asperger's Syndrome, Rett's Syndrome, etc. Symptoms of PDD can include
communication problems such as:
              •   Trouble using and understanding language
              • Having trouble with relating to people, objects, and events
              • Playing unusually with toys and other objects
              • Finding changes in routine or familiar surroundings hard
              • Repeating body movements and/or behaving the same over and over again
Kids with PDD have a diverse range of abilities, intelligence and behaviours. Some kids
do not speak, some will speak a small amount, and some kids have fairly normal
language development. Kids with this usually have repetitive play and social skills which
are obvious. This can be diagnosed the best way with a multi disciplinary assessment.
This involves your child having tests with a number of professionals, who will then give
you the information you need to decide about programs and treatments that are best for
you to use for you own child..
Treating PDD Early intervention is important in treating a PDD. Even though there is
not a cure, there is definitely hope for Kids with these disorders. Identifying and starting
work with these kids early is the key to helping with this. The main thing aimed for is to
maximize communication with kids with an autistic spectrum disorder. Therapy for
children with PDD should be done individually as each child's disorder is different and
has different needs. Some kids with these disorders do well in small classes with lots of
one-on-one attention. Others do well in standard classrooms with some kind of support.
The thing that is aimed for with treatment is to get kids with PDDs to a point where they
can be placed back in a mainstream classroom into a regular classroom. They may also
require special programs and support services, including speech and language therapy.
Helping Your Child Once you learn your child has a PDD, it's important to get help.
Because the needs of children with these disorders are different, you may want to set up
an individualized education plan (IEP) for your child. You'll want to incorporate social
skills and communication into the program, and most experts agree it should be highly
structured. Maximized speech and language intervention is important, as is the use of
behaviour modification and rewards to try to stop problem behaviours and to encourage
all types of communication. Encourage your child with hugs and praise, as well as
rewards that stimulate social interaction (like a trip to the park). If your child is in
school, talk with your child's teacher and try using some of the same rewards and
behavior modification techniques at home. That way, your child will get a consistent
message at home and at school.
Some information I have used was provided by:
www.kidshealth.org go into the parents section and type PDD in the search area
http://en.wikipedia.org/wiki/Pervasive_developmental_disorder
Since Lachlan has been diagnosed with this disorder, PDD.
Things are looking up and he is getting the extra help he needs. He is doing really well
with his reading, although he’s not at the normal standard he is improving in leaps and
bounds. He makes me very proud every time he accomplishes a very hard word. His
writing is beautiful, but to think back 2 years ago, he couldn’t even write!
He regularly attends The Attic, which is the Special Unit situated within his school. He
also gets extra help in class, One on One, which he really needs as he seems to cope
better this way. He also has Speech Therapy through the school as well.
The negative side to this is a lot of people don’t understand Lachlan until I explain his
disability. It makes it very hard, as you cannot see his disability. So people think
automatically that he is a NAUGHTY boy!
He does not have that many friends, which through my eyes is so very sad and
upsetting, but for Lachlan it’s just the norm and prefers to just play on his own.
It’s hard for him to comprehend some things. The Guidance Officer told me his brain is
like a filing cabinet, he looks for the answer in there, but has a lot of trouble finding what
file he put it into.
In the past 3 yrs, I felt a lot of emotions a mother could feel. Disappointment, failure as
a parent, sadness, stress and fear of what is yet to come. I am scared for my Lachlan,
and what he will have to endure in his life. By this I mean, people not understanding
him, him being seen as stupid or arrogant and most of all him not being accepted. In my
own words the best way I explain Lachlan is, he is JUST DIFFERENT!
It has been a long road….but I cannot change what has happened, but I CAN make it
better. I will do everything in my power, to see he gets the extra help he needs. I will
never let him feel stupid, isolated from others, misunderstood and most of all unloved.
I hope this has helped anyone out there, who may have a child with PDD OR knows a
child with PDD.
Thanks for reading my advice



POEM

This poem was sent to STRIVE, Poem by Rebecca Tuckey Muswellbrook, year 9 student.
 
JOHN
 
I have a brother
His name is John
He is Autistic and artistic with shaving cream
He loves to dream about the Wiggles and likes to giggle
 
He is sneaky and cheeky
He is funny and cuddly as a bunny
John loves Hi 5 it makes him jive
I’m in the middle, Cassie the oldest
John the youngest, the baby of the family
 
He can’t talk but he loves to walk
We have the best Mum in the world
She is never glum
 
I know John has a disability
But he can do things to the best of his ability
John is my brother so you can see
He can be annoying
But that’s just how things are meant to be 

 


 Useful Links 



Dr Lee Sturgeon
Consultant Clinical Psychologist
D.psyc (clinical). M.A.P., M.C.C.Ps
Suite 4 - 41 Charles St Warners Bay
PO Box 1151 Warners Bay NSW 2282
ph: (02) 4947 1777
fax: (02) 4948 1117

Paediatric & Adolescent
Occupational Therapy
Anna Behnke
BSc PGOT, BAOT, SROT, COT, OTR, MOTAus-NSW
Sensory Based Therapy - By appointment only
220 High Street, Maitland 2320
ph: (02) 4933 9986
www.thesensoryclinic.com
 
Hunter Occupational Therapy Service
169 Lawes Street
East Maitland
T. 02 49330664
F. 02 49330667
E. admin@hunterot.com.au
 
Amanda Tocci- MAEdst, BA, GradDipEd, GradCertTESOL
Director - Australian Literacy Clinic
Clinics in Hamilton & Maitland
Level 1, 435 High Street
Maitland NSW 2320
Level 1, Unit 1 & 2, 155 Nelson Street
Wallsend NSW
PO Box 2247
Greenhills NSW 2323
T. Admin - 0423 584 808
T. Director - 0402 096 922
E. contact@australianliteracyclinic.com.au
W. http://www.australianliteracyclinic.com.au

Elizabeth Fulham
Sensory Threads
M. 0412 998503
 
Cessnock / Kurri Kurri Health Services
Speech Pathology Department

Communicating Kids 
Speech/Language Pathology
www.communicatingkids.com.au

Cessnock District Hospital
View Street
Cessnock
T. 02 49910571
Kurri Kurri Hospital
Lang Street
Kurri Kurri
T. 02 49363243
 
See-n-Speak
PO Box 473
Winston Hills
T. 02 96207345
E. seeandspeak@optusnet.com.au
www.seeandspeak.com.au
 
Hunter Prelude Early Intervention Centre
131 Northcote Street
Kurri Kurri
T. 02 49374549
F. 02 49375571
E. mail@hunterprelude.com
 
Civic Avenue
Singleton
T. 0265714384
F. 0265724455
E. singleton@hunterprelude.com
 
1000 hours Early Intervention
www.1000hours.com.au
 
Autism Spectrum Australia (ASPECT)
PO Box 361
Forestville
T. 02 89778300
F.02 89778399
www.aspect.org.au
 
Autism Spectrum Australia Hunter
358 Sandgate Road
Shortland
T. 02 49556266
F. 02 49556270
E.hunter@aspect.org.au
 
DADHC
Hunter Region
T. 02 49085229
www.dadhc.nsw.gov.au
 
Early Links Inclusion Support Service
19 Galway Bay Drive
Ashtonfield
T. 02 49343773
F. 02343703
 
Life Activities
T. 02 49313100
www.lifeactivities.org.au
 
Centrelink Office
186 Vincent Street
Cessnock
www.centrelink.gov.au
 
Life without Barriers
5 Lee Wharf Honeysuckle Drive
Newcastle
T. 02 49291605
F. 02 49275113
E. natreception@lwb.org.au
www.lwb.org.au
 
Lower Hunter Temporary Care INC.
C/- Hospital
Lang Street
Kurri Kurri
T. 02 49375502
F. 02 49375502
E. temporarycare@lhtc.org.au
 
Commonwealth Carer Respite-Hunter
PO Box 385
Wallsend
1800 059 059
 
 
Families supporting Families inc
The Secretary
PO Box 178
Waratah
T. 0417431562
E. mick.kay@bigpond.com
www.e-bility.com/fsf/
 
Endeavour Industries Limited
Cnr Vincent & Edgeworth Streets
Cessnock
T. 02 49902600
E. endeavour@eil.org.au

Emery Partners
 
Solicitor
Louise Selmes
Email lselmes@emery.com.au
02 49939400
50 Vincent Street
Cessnock

Special Disability Trusts
Wills, Power of Attorney & Enduring Guardian

Companion card
www.nswcompanioncard.org.au

Families Supporting Families
Email: familessupportingfamilies@live.com.au
M. 0417 431562

Contact Details: Irene Ralston
Phone: 02 4932 7374
Mobile: 0437 327 379

Therese Potma

Inekards

www.inekards.com

The Carinya Group: Making a Difference
The Carinya Group provides accommodation, respite, consulting, behavioural consultation and early intervention to assist and aid families and their children with disabilities predominately assisting children with Autism, regardless of their financial situation or geographical location
Location: Gloucester
Mobile: 0413 695 230
Link: http://www.thecarinyagroup.com/default.html

Aussie Infinity Zone – Meeting one Saturday per month
Location: Lower Hunter Peer Support Hall 92 Station St Weston
Time: 2:00pm – 5:00pm
Cost: $5.00
Phone: Fiona 49913094 - 0421120579

Early days – Promoting Development of Young Children on the Autism Spectrum
T. 1800 334 155
www.earlydays.net.au

Artistic & Autistic
www.planetdeb.co.uk

Autism & Attention deficit disorders
Understanding & managing diet Therapy for your child 
E.info@autismdiet.com.au
www.autismdiet.com.au



Secret Agent Society 
What parents say, Thanks to this program, my child has been able to make a real friends for the first time in his life! -
E: sas@sst-institute.net
www.sst-institute.net


Autism Spectrum Disorders
Australian Council for Educational Research ACER
www.acer.edu.au/autism



Australian Advisory Board on Autism Spectrum Disorders
www.autismaus.com.au


Trampolining & Autism
T. 1800 586 772 -
www.springfree.com.au



Footprint books 02 9997 3973 - www.footprint.com.au
E: sales@footprint.com.au



Sparcs
Specialist Autism Resource Consultants
Sue Larkey
www.suelarkey.com


Fast for word
Fit brains learn better
T: 02 84674811
www.fastforward.com.au

Recovery Station
Paediatric Occupational therapy clinic
58 Victory parade
Toronto 
4959 2211
E: admin@recoverysstation.com.au
W: www.recoverystation.com.au 

The Carinya Group

Making a Difference for Autistic Children

Gloucester, NSW

www.thecarinyagroup.com 


Private Speech Pathologists in the Hunter/Newcastle:

The Communication Clinic
PO Box 545
East Maitland NSW 2323
Pathologists: Catriona Collins
M: 0414 753 437
E: thecommclinic@gmail.com
Service: School visits

Cessnock - All Areas Speech Pathology
265 Maitland Rd
Cessnock NSW 2325
Pathologists: Jane Beale
Ph: 1300 787 136
F: 4390 8857
E: jane.beale@iinet.net.au
Service: Corporate training, Better Start
Provider: Home/School visits

Cessnock Speech Pathology
Cessnock NSW 2325
M: 0404 838 712

Christina Hughes Private Speech Pathology
38 Falkiner Crescent
Singleton Heights NSW 2330
Pathologists: Christina Hughes
Ph: 6573 1515
F: 6573 1515
E: speak2christina@pacific.net.au

Get Ahead Speech Therapy
Suite 18C (Upper level)
121 Lawes St
East Maitland NSW 2323
Pathologists: Cass Hinchcliffe, Elise Jennings, Leah Taylor, Kaitlin Wright
Ph: 1300 657 220
F: 4934 8828
M: 0407 206 027
E: speech@getaheadlearning.com.au
W: http://www.getaheadspeechtherapy.com.au/
Services: Medicare; School visits

Jenny Johns
106 George St
Singleton NSW 2330
Pathologists: Jennifer Johns
F: 4961 2211
M: 0409 247 147
E: spnp@westnet.com.au
Services: Medicare; home/school visits; corporate training

Kate Mitchell Speech Pathology Services
Dungog & Maitland Community Preschool
Pathologists: Kate Mitchell
Ph: 4938 8484
M: 0418 476 656


To find out what Assistance is available - www.fahcsia.gov.au
or contact: The helping Children with Autism enquiry line on
T. 1800 289 177 


Asia Pacific Autism Conference - www.apac11.org


Through my Eyes: Thanh Bui The song has been recorded by 2008 Australian Idol Finalist. The song will be available for download from itunes with proceeds going to ASPECT for more information visit www.autismspectrum.org.au/podcast


APAC – cd –Rom mp3 www.evertecnology.com


Information Sheet to Pass On to Your New Teacher, to help with Transition

 http://www.autismvictoria.org.au/reading/autism_victoria_library.php


Welcome to Holland

SOCCER FOR PEOPLE WITH SPECIAL NEEDS 

Building Foundations DL-LR

Media Release

Youtube Video

Hunter Connect Letter of Introduction

Autism at School Australia Flyer

Autism Advisory Flyer

Parent Information Session

Strive Presentation

Getting strated with floortime

Floortime higher levels

Meltdowns

Information Sheet to Pass On to Yout New Teacher, to help with Transition

PlanetDeb

One Stop Sensory Shop
Phone: 0435 806 026
onestopsensoryshop.com.au


Strive Seminar August 2011

Dr Lee Sturgeon Presentation

Dr Wendy Lawson Presentation

Autism Fact Sheets

 Fact sheet for parents

Frequently Asked Question - Helping Children with Autism program


Autism Awareness Youtube Video

Autism Support Group | Autism Resources
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