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Below is an account of a parent’s story, in their own words, just the names have been changed for privacy reasons. It would be interesting to read about what other parents have been through.

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At 18 months of age, a concerning sign that something was wrong occurred. Janet recounts how frightening it was watching her son run head first into walls repeatedly, despite hurting himself. A few other tell-tale signs that indicated a problem were that he was unable to crawl properly and his milestones were generally behind.

 At 20 months of age, Janet took her son overseas to her home country. Upon arriving she took him to see a psychologist because at that point, she was certain something was not right. The Psychologist said that John was normal and that there was nothing wrong with him, however, Janet was not convinced. By this point her son was becoming aggressive and frustrated very easily and as a result he was hitting and kicking. After returning home to Australia a community health nurse examined John. After Janet explained his eating, sleep patterns and behaviors the Nurse agreed that he needed to be taken to a paediatrician. What followed was a series of back and forth with various health care professionals, each opinion different from the next, Janet getting no closer to having her questions answered or concerns identified.

Finally, John was taken to a well-known psychologist while travelling overseas and within 10 minutes he was diagnosed with having high functioning, mild, Autism Spectrum Disorder. Janet recounts her initial reaction to learning her son’s diagnosis was that it was not mild for her, however, while it was harshly confronting to hear that her son had a disorder it was a relief to receive closure. Unfortunately, this meant that John would have to be diagnosed again in Australia, but at this point Janet was relieved to have gotten some answers. “In a moment the world stopped, it became dark” Janet confesses, as after her son’s initial diagnosis the reality was difficult to process. In the coming months after John’s diagnosis Janet admits she was very angry and suffered from stress, leading her to see a psychologist for a year which aided the anxiety she suffered from. Dealing with challenges relating to her sons ASD diagnosis was very difficult, Janet compares the communication barrier to trying to communicate with someone speaking a different language.

 The most challenging part of the journey for Janet was the huge gap in receptive language, as prior to his diagnosis John was not able to express himself or string together sentences. The outpour of support from Janet’s parents and extended family was a comfort in the whirlwind of John’s diagnosis. “The way they loved him did not change at all,” she said, mentioning that within this process she educated her family regarding ASD in the hope that they would be able to better understand John and in turn help with the management of his condition. However, Janet shed light on initially keeping the diagnosis from some relatives, as she believed that this would have been too stressful to handle in the first few months after diagnosis. “People with ASD think differently, it opened a door” stated Janet, going on to say that it helped her to understand the way that others think. Within the process of the diagnosis for her son, it also allowed her husband to reflect on his own childhood. “He realised that he had many symptoms of Asperger’s” she said, stating that he now realizes the reason behind his sensory issues and why he was not interested in being social or having many friends. He believes he can understand his son on a different level, as he acknowledges he is on the spectrum himself.

The advice Janet offers to other parents is to trust your instincts and seek multiple opinions. She believes all medical practitioners operate differently some being ‘too relaxed’ and others believing a child has to have ‘all of the symptoms, and tick all boxes’ in order to justify an ASD assessment. It may also be beneficial to have your child’s therapists work together as a team and develop a short and long term plan, syncing therapies so that your child can fully benefit from each session. Outreach visits to kinder or school are also of benefit as this allowed the therapist to see her son ‘in action’. Janet’s final word of advice was that things will get easier, always make expectations beyond your child’s ability and never lose hope.

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An update on our jacket drive. We have some bad news and some very good news. We found out that the jackets parents donated were not accepted by customs in Vietnam. After discussing the shipment with DHL and in the spirit of Christmas, they agreed to donate US$1000 to purchase new jackets. With the help of our contact in Vietnam,Tuan, we found a local supplier to supply 100 jackets. We just received the message and photo from Tuan below. A big thank you to all the families that donated jackets for making this possible and to DHLexpress for following through and delivering for those in need in the Sa Pa Valley. Dhlexpress .

"I already sent these jackets for local childrens at Tavan school where is away to Sapa 20km mate , That's the poorest village in Sapa . It's so Meaningful day for them to receive gift on Christmas day from your organization and with your help to bring a warm winter for them"



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Ladybug House by Renato Ulpiano - 7M ago

We are so pleased to hear some heart warming news today, two wonderful bundles of joy arrived for Mariah and Dean, see message and a photo of the beautiful boys below.
'We are so happy to announce the safe arrival of George and John (Johnny) , born at 12:01pm and 12:02pm 29/12/2018, weighing 2685g and 2675g, respectively. We are all doing really well and are so excited to be welcoming these little miracles into the world!'
Dean and Mariah

(PS I told everyone who wanted to listen that it was going to be two boys!)

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The NDIS have recently updated their web page related to self managing your NDIS funds.

Watch the video or click through here to see the full page.

Self Managing Your NDIS plan - YouTube

 

Here are some of the main points from the page.

Self-managing your NDIS funding gives you control, independence and flexibility in arranging and paying for your supports.

If you self-manage your NDIS funding you will have:

  • Choice in deciding what supports you purchase in line with what is included in your plan, who provides these supports and how they are delivered.
  • Flexibility to use any provider that will best help you to meet your plan goals.
  • Capacity to employ or contract staff directly, or have someone employ staff on your behalf.
  • Ability to negotiate the costs of your supports so you get the best value-for-money and to use savings to buy more or better quality supports.
  • Control over and responsibility for your NDIS funding so you can manage your own budget for the duration of your plan.
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