Autism: A mum determined to unlock her son so he can live an independent life.
Dyslexia Explored #35
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What do you do when you discover your autistic child’s gibberish means “Please be happy. I’m so sorry.”? When a therapist records your 5-yr old child’s gibberish and slows it down so much you can actually hear the words. What do you do when you realize your child is locked in their mind trying to communicate but can’t?
In this episode, we are going to make a little departure from our normal topic of dyslexia and talk about autism. Autism and dyslexia are different, but I just could not pass up the opportunity to speak with Stephanie and hear this story. As parents of dyslexics, although our children challenges are different, the challenges for us as parents can be similar.
In this episode, I’d like to introduce you to Stephanie Hill, a single mom and former secondary school teacher of English and Spanish, who lives in Las Vegas Nevada.
Stephanie is going to share her autism story, which is quite extreme. For example, her son has received 1000+ hours of tutoring over 12 years at a cost of over $400,000 and a large part of which Stephanie has had to find herself. This is just a small indication of the challenges faced in this story.
For our regular listeners, this episode really gets to the heart of a parents challenge. The parenting lessons and insights are universal to everyone who has a child with extra needs.
She talks about how in the beginning he was meeting all the milestones and being responsive even beginning to speak and say ‘mama’ but something happened at 14 months and he started to shut down. She knew something was wrong. She lived in denial for a year, until a friend had the courage to say “maybe he needs tested for autism”.
She tells the story of the diagnosis at three years old and then the beginning of the treatment. Waking up to the reality that he had 100% chance of being institutionalized for the rest of his life if he didn’t get interventions.
She shares her story of how she has spent the last 12 years determined to give him the best outcome using interventions such as Applied Behavioral Analysis (ABA).
The five year process of systematically helping him gain language at the age of 8 yrs. Year after year of working through Ecolalia, gibberish, mono syllabic, scrambled syntax to the point where he gained language and was free to communicate. Stephanie shares the example of when they recording him speaking in gibberish and slowed it down so they could understand him and discovered he was saying “Please be happy. I’m so sorry.” How do you process that as a parent? How do you push on with interventions? How do you find the right balance? She shares her inner struggle with this.
This is a story a mum determined to help unlock her son so he can communicate and live independently.
And she shares about how it’s been as a parent to deal with this.
– Dealing with expectations as a parent.
– Her hopes for her own life being swept away.
– Dealing with the expectations and timelines of society.
– Holding onto her faith that her son can get the best outcome
– The rewards of the journey.
Now at the age of 15 and how they’re still working through this process.
-Acknowledging the huge amounts of progress and development
– Seeing there is still more to do to achieve the goal of an independent man.
Stephanie shares her experience about how important it was to her to hunt for interventions and not feel like a victim.
How it has been a journey of accepting what we’ve been given and make the most of what life is given us. Appreciating the rewards are that this has made them both “indominable, focused and authentic”.
I hope you enjoy this episode. Have a tissue to hand. Please don’t forget to leave a review on what you think of the podcast.
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Links you might like to check out:
Parents: Nevada Autism funding is too low to work: https://www.rgj.com/story/news/politics/2015/10/16/parents-fear-states-autism-funding-low-work/74087390/
How to contact Stephanie: http://phetoolkit.com/itac/directory/detailbio.cfm?program=LEND&staffid=13858
We’d really love to hear from you so please take a moment to share your thoughts or any ways we could help you on your journey with dyslexia.