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

Read More
Our Story – Kylie And Ethan
Aug15

Our Story – Kylie And Ethan

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

Read More

Editorial : Strive Scores an “A” for Supporting Autism

Editorial for local newspaper

“What a productive year 2008 has been for the Strive Support Group-Supporting Families Living with Autism.

The group formed in October 2007 now has over 60 members (parents, grandparents, carers and teachers) from the Cessnock, Singleton, Maitland and Newcastle areas. This in its self demonstrates how many people are dealing with this issue and how valuable such a service can be supporting them through their journey.

The Strive Support Group has not only provided emotional support to its members, it has allowed them access to healthcare professionals who have extensive knowledge and expertise in the field of Autism. Strive has been fortunate to have had leading experts such as Clinical Psychologists, Occupational Therapists, Speech Therapists, present at the monthly meetings. Also Government Departments, Private Support Services, and public and private educational representatives have provided valuable information about services and funding available. Most insightful of all have been the presentations from parents of, and children with, Autism Spectrum Disorder.

So successful is the “Strive formula” that the group has been asked to provide information and advice to other parents to enable them to establish similar support groups within their local communities. Strive has also been invited to present at workshops and other Autism conferences.

Such a group cannot continue without the support of its community. Strive Co-ordinator Maxine Baird would like to thank the ANZ bank for their tremendous fundraising efforts, Sonia and Jason Higgins for designing a magnificent website, Cessnock lions Club for their donation and the Cessnock Advertiser for raising the awareness of Autism and the events of Strive.

One in 160 children is diagnosed with Autism-it touches the lives of so many.”

Other achievements:

One of our major goals was to lobby for services in our area.

Our August meeting focussed on identifying the needs of families in our areas.

Information collated was sent to relevant Government bodies that sent representatives to a special meeting to discuss the needs in our area and is as follows:
Attendance : Mark Durie (Aspect), Grace Petterson (Hunter Prelude), Cheryl Pringle (Department of Education and Training), Deb Beckwith (Department of Education and Training), Karen Marks (Life Without Barriers), Mandy Pike (Early Links), Jane Hodgson (Local Facilitator Koe-nara), Alan Baird (Strive Support Group), Tracey Harrington (Strive Support Group).
Apologies: Kellie Bland (Department for Aging, Disability and Home Care), Maxine Baird (Strive Support Group)

The individuals attending this special meeting were informed about the monthly Strive Support Group meeting held on Tuesday 12th August, which was attended by a range of parents, carers and educators. The members of the Strive group who attended the 12th August meeting were asked to submit their thoughts on the services needed in the Cessnock area for early intervention for children with Autism.

The main five areas of need were summarised and presented at this special meeting and the responses of those attending were recorded as follows:

  1. The establishment of an Autism specific intervention class 0-3 centre based, 3-6 (minimum 20 hours per week), 6-12 school based.
  2. Autism specialised support for children attending mainstream preschool/primary school settings including:
    - Autism specific teacher aide training
    - Autism specific support/training for teachers including knowledge of Autism, teaching strategies, sensory integration and programming support
    - Early inclusion/transition support teachers
    - Social skill programs for children
  3. The establishment of a playgroup for children 0-6 with Autism/special needs with a social skill focus and education and support for parents.
  4. Increased availability and affordability of professional services such as Occupational Therapists, Speech Therapists, paediatricians and psychologists.
  5. Centralised coordination of support/educational/health services in the form of a telephone hot line, directory, information pack or website to enable parents to become more aware of what is available and to be able to make informed choices when selecting a service that best suits their child.

 

Due to time restraints the following points were not discussed but were documented and given to those attending. These issues can be raised at our September meeting where DET, Aspect, Early Links, Life With Out Barriers and Prelude will be represented.

  • Transition support to primary, high school and the workplace.
  • Respite support for families, siblings etc
  • After school activities
  • Mentor/buddy program to support child in mainstream settings
  • Therapies provided by a specific clinic
  • Educating GPs and other health professional about the characteristics of Autism to enable an earlier diagnosis

Amazingly the response to this meeting from the attending bodies has resulted directly or indirectly in the formation of:

  • an Autism specific intervention class 3 years of age to 6 years of age at the Hunter Prelude in Kurri beginning in 2009 Term 1
  • a soccer squad of children aged between 4 and 15 all with ASD training each Thursday with the future goal of organising
  • an application to establish a special needs playgroup in the Cessnock area with a volunteer coordinator, an established and resourced site and the commitment of Department of Education to fence it for security reasons.

There are many points that have yet to be addressed from our list and it is our goal that throughout 2009 we will make representations to our local members both state and federal to lobby for these much needed services.

Also we have made donations to a local school of $1000 in recognition of their commitment to improving the educational outcomes of children with ASD.

I think that it is important to thank Maxine Baird for her contribution to the group – for without it I know it would not have formed or survived. Maxine has approached this group as she does with anything in her life and that is with passion and determination. It is remarkable what when one woman strives for the best outcomes for her son she can have such an impact on the lives of so many children and their families in the greater Cessnock community living with ASD.

 

Read More
Strive For Autism – Butch Hays
Oct30

Strive For Autism – Butch Hays

Butch Hays SNAP

SNAP Programs -

Special Needs Accommodation Placement Programs snapprograms.org.au/
butchhays@snapprograms.org
karinford@snapprograms.org
Butch Mobile: 0448 606 789
Karin Mobile: 0401 923 001
Fax: 02 4943 0114

Read More

World Autism Awareness Day “Go Blue” – Advertiser Article

EDITORIAL ARTICLE SUBMITTED TO CESSNOCK ADVERTISER

The Sixth annual world Autism Awareness Day is Tuesday 2nd April 2013. Every year, Autism organizations around the world celebrate the day with unique fundraising and awareness raising events.

 

Baird Real Estates chosen charity since 2004 has been Autism raising thousands of dollars for this much needed charity. They will be holding a BBQ on 2nd April 10am – 2:00am out the front of their office. Cessnock Lions club again will be cooking up a storm. Autism merchandise will be available. Autism awareness packs have been sent to all local schools, encouraging them to join the Blue theme. A colouring in competition will be judged 5th April great cash prizes will be on offer entry sheets are available from Baird Real Estate.

 

Maxine Baird president of Strive For Autism a group formed in 2007 that supports families coping with Autism. The group meets the 2nd Tuesday of each month excluding holiday’s 6:30pm -8:30pm. The support group is a great opportunity for learning, sharing ideas, hearing from professionals, discussing strategies to help deal with problems. Quite a few fundraising events happen during the year organised by Strive – all money raised is given back to our local community in the form of sponsorship- school presentation day awards- sporting events and equipment- all assisting children with ASD. A pampering evening has been organised 14th May for Parents & Carers it was a big success last year and is Free.

The annual shopping trip to Sydney outlets and shops is on 12-13th October. Both events are on the website www.striveforautism.org.au

Strive will do its part in Cessnock to promote Autism awareness and the need for understanding for kids on the spectrum.

 

Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. People with ASD have problems with social and communication skills. Many people with ASD also have unusual ways of learning, paying attention, or reacting to sensations. It is part of a group disorders known as Autism Spectrum Disorders (ASD) In most cases it’s causes are unknown. Today 1 in 100 individuals diagnosed with Autism.

 

Money raised this year will go to Autism Spectrum Australia (Aspect) a not-for-profit organisation committed to helping people on the Autism Spectrum achieve their potential. Aspect builds confidence and capacity with people on the Autism Spectrum, their families and their communities.

 

So remember wear Blue and come along to Baird Real Estate and support Autism Awareness Day!

Read More
Strive For Autism Sponsors Swansea Belmont Special Nippers
Feb13

Strive For Autism Sponsors Swansea Belmont Special Nippers

Strive For Autism supports a number a local initiatives.  Strive was contacted by Swansea Belmont Special Nippers In regards to much needed sponsorship for their cause.  See the sponsorship request below.   Strive For Autism was happy to assist:

Download (DOCX, 2.53MB)

Read More
Strive For Autism Sponsors SPECIAL OLYMPICS HUNTER VALLEY REGION
Oct23

Strive For Autism Sponsors SPECIAL OLYMPICS HUNTER VALLEY REGION

Strive for Autism was contacted by Ellena Morris from SPECIAL OLYMPICS HUNTER VALLEY REGION  in regards to getting sponsorship for two of their athletes. Each athlete required $1000 sponsorship each.   Strive For Autism was able to support these amazing young people financially to aid them to further their involvement in the Special Olympics.

 

 

Read More

Strive 18th Month Review

Strive For Autism has been busily working in and with our local community to do some amazing things.  Check out the  past 18 Months and all of the news and progress Maxine and the many members of the board, and our community have achieved:

Download (DOC, 1.95MB)

Read More

Seminar – Dr Wendy Lawson MAPS

Dr Wendy Lawson Maps  attended a recent seminar below is the slideshow / powerpoint presentation provided during this seminar. We are so appreciative of Wendy's time and knowledge. We thank her for sharing this information with us!

Download (PPTX, 4.24MB)

Read More
Strive Autism Support Group  | Autism Awareness
Jun01

Strive Autism Support Group | Autism Awareness

Strive For Autism Support Group provided Cessnock Advertiser with a great press release on Autism Awareness:

Download (DOC, 1.01MB)

Read More
Strive & Hunter Connect Autism Support Groups  | Autism Awareness Press Release
Jun01

Strive & Hunter Connect Autism Support Groups | Autism Awareness Press Release

Strive & Hunter Connect Autism Support Groups Joint Press Release for Maitland Mercury  on Autism Awareness

Download (DOC, 1.7MB)

Read More
Exhibition Night  29th May 2011
May29
Read More