Challenges of Raising a Child With A Disability Part II

Michele S. is a mother of a non-verbal autistic son who lives in Australia.  I've not met her in person, but we connected on Facebook after she became my first Mindscent® customer. I enjoy reading her posts and I have come to admire her so much for the enormous love she has for her son, her resilience, patience and humor she expresses while managing a challenging life.  This interview is with Michele.  Warning:  You may want to take out a handkerchief.

Ruth:  You are a mother of a non-verbal autistic son.  Can you tell me about how it is taking care of him throughout the years growing up?

Michele:  William is now 17 and has not been in school or a program for three years.  He is supported in my home five days a week by two workers at a time.  He’s an adorable funny young man and is the light of our lives but also offers challenges that make me dig deep into my own sanity.  You  know where they say madness is inherited:  From your children!  I think I would be the world's best hostage negotiator:  My son's condition has challenged every belief I had in what it was to be happy.  It is traumatic at times and unbelievably rewarding at others.  It’s our journey not a journey we chose but ours all the same. 

Ruth:  If you could give advice to other parents who have children with autism what would it be? 

Michele:  Invest in your relationship. Be kind to each other, reflect, debrief (ha ha) de-stress, apologize, be kind to each other and laugh.  Our dark sense of humor has saved our marriage- you will need an ally!  -They don’t “grow out of it" and every day holds an opportunity to learn and they will surprise you one day with what they know. Some folks put a “ time frame” on development--like if they don’t talk by a certain age--this is a very damaging thing to say to a parent, one just can’t know what your child’s future holds, and the additional pressure with a sense of urgency is counterproductive. 

-Don’t let (overlook behaviors) things go because “it is cute". Our babies grow up very fast and if it is something you would not want your adult child doing - address it.  And finally...the number one piece of advice is to “trust your gut!”

Ruth:  When did you realize that William had ASD?

Michele:  There was a “shift” when he was around 12 months, his health declined and he lost skills, he was diagnosedat 2. Read what you will into that. He was diagnosed with severe autism at the age of 2, with many comorbid conditions:  He has gut disbiosis, systemic candidiasis, which we spent thousands of dollars both with mainstream pharmaceuticals, alternative therapies and diet, which resolved petit mal seizures (and addressed his physical health).  These have recently returned which I am told is common in puberty for people on the spectrum.  Subsequently--epilepsy, diagnoses of ADHD, OCD, anxiety, dyspraxia and sensory and auditory processing disorders, with mild intellectual disability.  He was nonverbal until around 11, and is now considered selectively mute.  Almost two years ago there a traumatic experience at the region's main hospital, where he panicked and was retrained for a few hours while they attempted to sedate him. This in turn resulted in a diagnosis of adjustment disorder with conduct and maladaptive behaviors. There was massive loss of trust in his eyes of myself and his assistance dog as he begged for us to help and we could not.    

The HCC got involved and we negotiated to change the admissions process for all people with special needs and raise awareness of the complexity of ASD in the hospital environment -, it remains to be seen whether our efforts have been effective. This coincided with puberty and we have seen massive increase in maladaptive behavior and anxiety. We are in the midst of attempting to change the system for all, failing that we have legal avenues.

Ruth: What was he (William) like as a youngster and how did you get through the hurdles in the educational system in Australia where you live?  

Michele:  He was a pretty quiet little guy, a real adventure-seeker.  He wandered a lot.  We have not had a lot of success with any of the forms of schooling the education system offered. He has not been in school since he was just 14. However this does not mean his learning has stopped. He is an active learner and giving my son many different experiences he acquires new skills every day. He craves new experiences and knowledge and he loves being complemented on his cleverness.

Ruth:  I understand that you work with the elderly at an Assisted Living Community.  What made you go into this line of work?

Michele;  I work casually for a service that supports Carers by funding emergency respite and career education.  The changing face of this sector in Australia will see this service defunded next year unfortunately. They are auspiced by an aged-care provider and I have been very fortunate to be employed by such a career-friendly employer.  I don’t know where I will find that in the future, perhaps working directly for the NDIA is an option.🤷🏻‍♀️

Ruth:  What have the years of being a mother of a child with ASD taught you about life?  About people?

Michele:  Pick your battles not all of them are worth the fight.  Same advice for friendships.  I am stronger than I realized. I have found it has every one in Will's life more attuned to what is really important in life. Love, all the rest is noise. 

Ruth:  I rave about you being the first purchaser of MindScent®. You and I live on opposite hemispheres.  How did you find The Scent Guru Group?  

Michele:  I spotted the kit on my newsfeed I think it was an advert for Essential Awakenings®. I considered the purchase for a while. It resonated with me, as I personally believe that this is one science that is overlooked.  My memory is strongly contested to scent. I have used scent on many forms to elicit good feelings and included it in my children’s play.  When I saw the MindScent® Kit , I pounced, I thought BRILLIANT

Ruth:  Can you tell us how William has reacted to and how often you use MindScent®?

Michele: We include it in his “sensory diet”. It helps group and focus him especially during times of anxiety and change.  I'm surprised how engaged with the “game” as we have some few wins with activities, and he has very restricted interests:  He really enjoys it!

Ruth:  If there was one wish you could have, what would it be?  

Michele: To see the world through my son's eyes so I can give him the best opportunities for him to find happiness , in what ever form that is. It is a pretty basic desire I think all parents share. Reducing his anxiety and developing his ability to recognize his own body and emotions so he can calm himself is our number one goal. Maybe a weekend with Professor Tony Attwood! (He is a Rock Star in the Autism world.) I go to his workshops at any opportunity.  

Ruth:  Can you tell us about your most vivid scent memory?  

Michele: Oh I remember my first days at school the smell of crayons and plasticine, the big grey oily bars of government- issued plasticine.   Bliss! Everything new and exciting and full of potential.I also love the smell of coconut! If I am struggling and need a break or holiday , which is difficult to do, I make myself a Fijian Rum, turn on a foreign language news channel and light a coconut candle and for a few moments I am on a Pacific Island!