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
This poem was sent to STRIVE, Poem by Rebecca Tuckey Muswellbrook, year 9 student.
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
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. firstname.lastname@example.org
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
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