The Not So Good Doctor

I have been approached by so many different people asking if I have seen the show, The Good Doctor.  Most people I talk with love it and say it is a great show and want to tell me about it because we are an autism family.  They have wonderful things to say about it.  How good it is.  How smart the main character is.  I have not seen the show.  I disagreed with the idea of it from the start, but didn’t say anything because I didn’t think anyone would understand or maybe they would feel that I was just being a negative Nellie.  With World Autism Awareness Day having just been celebrated in April, the social media profile picture frames reflecting awareness and acceptance, and now the new neurodiversity movement,  I just wanted to go ahead and put my thoughts out there.  Again, this is my opinion and I realize that everyone is entitled to their own.  So, continue to read, keeping that in mind.

My son, Michael, is 15 years old.  I knew he was autistic when he was around 10-11 months old.  He wasn’t officially diagnosed until the 4th grade because he tested right on the line, if you will.  He is high functioning.  He makes eye contact, is well spoken, and very affectionate.  Not what people think of when they think “autism”, but he wasn’t always so high functioning.   Actually, he was originally diagnosed as severely developmentally delayed with sensory integrative disfunction (sensory processing disorder).  Even though he was not diagnosed with autism until later in life, we still had him in different therapies and we have worked very hard with him throughout his life, so he has had several big improvements over the years, from not talking, not always making good eye contact, not having fine or coordinated gross motor skills and an inability to process emotions in an appropriate manner.  Because of the great strides he has made, at first interaction, many people do not realize that he is autistic.  This does not mean that he does not still have real struggles that he deals with on a daily basis.

My problem with a show like the popular one that is on now is this.  I have many friends with autistic children who are much more severe.  Some are non-verbal.  Some have days of rage and anguish and cannot vocalize it other than moans and screams.  Some autistic “children” are still not potty trained or have extreme gut issues, and are not able to understand, much less tell a parent what is wrong. I put the word children in quotes because some of them are in their 20’s and will need constant care for the rest of their lives.  Autism is a very broad spectrum.  Even though I believe that my son will be able to function and thrive in day-to-day life on his own as an adult, he still has obstacles to overcome due to his diagnosis.

Let’s look at some statistics located by doing a simple internet search.  Per the Autism Research Institute, just 10% of autistic people have savant tendencies.  According to ABC.com, the main character of their show, The Good Doctor, has autism and savant syndrome.  People who love the show seem to like its message of inclusiveness and have fallen in love with the main character.  So, how about the other 90% of autistic children/adults in the world?  The ones that will not be a surgeon or attorney or accountant.  1 in 4 children with ASD has seizures, according to autism-help.org.   That’s 25%.  According to the California Department of Education Diagnostics Center of Central California, as many as 50% of individuals with autism are non-verbal.  Now, if you look at autismspeaks.org, they say that 25% are non-verbal.  Either way,  I just feel that it is important that people who are not affected by autism on a daily basis have a true picture of what autism really looks like.

Honestly, we are going to have no choice but to address how the other 90% of autistic people will be cared for, seeing how the rate of autism keeps climbing. In 2004, 1 in 166 were found to have an Autism Spectrum Disorder, according to a CDC Autism Developmental Disabilities Monitoring Network document about the prevalence of the autism spectrum disorders in multiple areas of the United States.   As of March 2016, per the CDC website, 1 in 68 children has been identified with ASD.  1 in 42 boys.  I, personally, will not accept that.  I have no intentions of accepting that and I don’t want shows or groups encouraging us to just accept that autism is just a normal part of our world now and we should just accept it and that’s it.  No.  No.  Not awareness and acceptance.  Research and treatment.ousa-chea-552189-unsplash

 

The neurodiversity mindset has taken us by storm and it feels like it has split the autism community in two.  I realize that many high functioning autistic adults don’t like the idea of parents wanting answers and a reason behind their child or children being autistic.  I have read some pretty nasty comments on different threads of articles stating that we aren’t fit to be parents at all,  if we cannot love our children the way they are.  I want to set the record straight, once and for all on that statement.  I absolutely love my son with every fiber of my being and would never want to change his personality.  It is because of my deep love for him that I have worked so hard with him to help him develop new skills, so that he can be healthier and happier.  He was non-verbal when he was younger, which was extremely frustrating for him to communicate his needs and wants.   He had little fine and gross motor skills, which made it hard for him to color with a crayon, throw a ball, run, etc…  He struggled to fall asleep and stay asleep.  He was sick with strep throat and other illnesses a lot, which caused him to miss school and family gatherings.  He was lethargic with little energy.  He had dark circles under his eyes.  He also only played by himself when he was little.  Interaction with others had to be learned.  It was not automatic.  Most things were not.

P1000053

Today, thanks in part, to our research and reaching out for help by way of therapies, health supplements, reduction of toxins and inflammation in the body and brain, and other things, Michael is verbal and very well spoken.  He plays basketball with his friends in the youth group on Wednesday nights at church.  He is very healthy and has energy.  He sleeps better.  He has friends and with his fine motor skills, loves to draw.  He has also found a love for acting and singing in school musicals.  We, as his loving parents and siblings, are overjoyed with the skills he has learned and what all he is able to do.  Searching for answers to help your child is in no way unloving or unaccepting and in absolutely no way does it make us unfit to be parents.  Now, I am not saying that someone cannot be genetically predisposed to becoming autistic, when neurological toxins have overloaded the body, but I do not believe that autism is simply genetic alone.  My concern with the neurodiversity movement is this: Acceptance of autism as simply being diverse could negate the aspiration to find causes, solutions, and even a cure.  I am not saying not to accept people.  Clearly.  I am saying not to accept neurological damage as a new norm in society.

I just want to make it clear that the vast majority of autistic people are not savants, like the Good Doctor.  In my opinion, it is dangerous to paint such a limited picture of autism for those that do not deal with it on a daily basis.  I am very thankful that my son is high functioning now,  but I am also speaking for the many autistic children who are not, and for their parents, who are sleep deprived, exhausted, and needing support and answers, and truly just want their child to be healthy and strong.  That is not unloving and unaccepting.  That is devoted and caring.  Parents who would go to the ends of the earth, researching all the things, enduring all the things, and loving their child through all the things, to find anything that can help their child.  May we as a society never stop looking at all the things we can to help us each live our best lives.

 

Snake Oil

25036179_1739195522787046_5138119369624125440_n

You know how different things come and go with your circle of friends and within your community, like shoulder pads, fidget spinners, low-fat foods, step aerobics.  Yes, I had a step.  It was green.  Don’t judge.  Some of the things worked, and well – some of them didn’t.  They just didn’t.  Some of these fads we try, and some we just observe and keep it movin’.  That is how I felt about the essential oil thing when it popped up everywhere.  I mean everywhere! Church, work, and boutiques I shopped at, the grocery stores.  More and more Facebook posts by friends talking about oils for scrapes and upset tummies,  better sleep, and anxiety.  I just didn’t believe in it and figured it was another fad that would come and then fade away as something else took its place.

Well, I couldn’t have been more wrong.  It’s funny how once you have exhausted all other options, you are more open to trying things you never thought you would be open to trying.  Our middle child has severe eczema and was in a very bad flare last year.  We have frequented the dermatologist over the years and have used oral medications, as well as all kinds of steroid creams to try, and get things under control.  I wasn’t aware, at the time, that stress can cause an awful flare.  It was her Senior year of high-school and she had a LOT going on.  She finally started to clear up, after 4 months of an anti-biotic and several refills of a steroid cream.  Of course, our concern was and still is the long-term effects of these strong medications she was taking.  That’s when we discovered a friend from church had been dealing with some eczema issues and was using Young Living essential oils and they were working.  We asked her if we could try what she was using and she graciously made us up a roller bottle of oils and we tried it…and it worked.  Lauren came up to me just a couple of days later and said she was out and needed more.  I was surprised 1. that it really did work and 2. that she had used it up so fast.  So, her friend made up another bottle of the oils and Lauren continued to see positive results.  Well, I knew we couldn’t just keep using up her friend’s oils, so I asked how we could buy them ourselves and that day we entered into a whole new world of health and wellness that we had never ventured into before.

We purchased a starter kit with 11 oils, a diffuser, and a couple of sample packets of a drink with oils infused into it.  We also purchased a couple of other oils that didn’t come in the starter kit, so that we could make up the roller bottle for Lauren to use.  That was the only reason I purchased this kit.  It’s not like we were going to do anything else with it, other than make up this one concoction we knew about.  Ha!  Little did I know the path God was taking us down.  Looking back now, I realize how many areas of our lives He was moving in.

I let that kit sit for 6 months.  I did get out the diffuser and diffused some lemon and peppermint in the morning, but that was about it.  It was April of last year and Springtime allergies had us all a little stuffy.  It seemed to help Michael’s stuffy nose.  He would be able to blow his nose and breathe better.  I liked the uplifting scent of the lemon.  Steve said the peppermint smelled like candy canes.  Soon, school was out and we were very glad because Michael’s 7th grade year was rough, to say the least.  I felt it was a miracle that I still had hair and spent the summer dreading the next school year.  You see, things had not gone very smoothly last year.  Homework was beyond a struggle and communication with the school had not gone well.  I had no idea how we were going to get through the 8th grade.

Summer rocked on and the beginning of the school year came.  Yep, more of the same.  I was in tears, he was frustrated and I just did not know what in the world we were going to do.  It was September, we were at church, and I ran into the mom of the girl with the oils.  I remembered her telling me about those two drink samples in my kit and how much benefit her family had received from incorporating it into their family’s lives.  She said they were good for boosting your immune system and reducing inflammation.  So, I asked her what to do with them.  She told me to put them in the fridge to chill, shake one up and then drink one during the day.  So, I took one to work and drank it after lunch that day.  I had good afternoon.  I was focused on my work and then went home at the end of the day.  I didn’t think much more about it.  I took the other pouch to work the next day.  I had a great numbers day.  Actually, both of the days I had the best numbers I had ever had at work.  I looked at Steve and said how I had felt laser focused and wondered if it was just a coincidence or if that little red drink actually helped…and if it had helped, would it help Michael.

We bought 4 more of those pouches and we started giving Michael half a pouch every morning before school.  We had also started him on some vitamin C and vitamin D, as his pediatrician had found that he was low vitamin D.  Now, you have to know Michael and his typical week.  Michael is autistic and it takes every ounce of energy he has to just get through the day at school.  So, by the end of the week, he is exhausted.  I usually find him laid out on the couch, either asleep or just staring into space.  Worn out.  When asked about his day, he is not able to tell you much of anything.  He tries to remember, but just can’t.  Well, I walked in the door from work that Friday night, and said hello.  I was walking through the kitchen when Michael met me and asked me how my day was.  He was up.  Walking around.  I was kind of surprised and said, fine and asked him how his day was, expecting the usual one word answer, fine.  He began to tell me everything he did at school that day.  How cool the science experiments were and what they sang in choir.  I looked at Steve.  He looked at me.  We went to pick his sister up from college to see us for the weekend.  She got in the car and I turned around and asked Michael to tell Lauren how his day was at school.  🙂  Same thing.  I looked at her and her jaw dropped.  No.  It definitely wasn’t our imagination.  He was better.  He had more energy.  He was focused.  He could remember.  That was six months ago.  We have incorporated that little red drink into our daily lives.  He has since told me that he sleeps better and feels better.

Since then, we have diffused other oils and tried new ones.  We have learned so many amazing things about the lifeblood of the plants that God has given us and the many benefits they have.  That little red drink is called Ningxia Red.  The wolfberry is the main ingredient along with many super fruit juices and infused essential oils.  It has been a game changer for us.  Michael finishes much more of his work at school.  As a result, he has less homework, and what he does have, he is able to get through easier.  Now granted, he still has some rough days, but this year has gone much more smoothly.  Lauren decided to purchase her own kit this past December and is experimenting with different oils.  She loves grapefruit to help with the occasional blemish, as does Michael. Lavender really is good for supporting sleep, as well as, Cedarwood.  I love that there are no long-term negative side effects and our wellness is being supported in a natural and healthy way.  So much for my snake oil theory.  If it is just a placebo effect,  I’ll just keep on believing all the things about these oils and keep reaping the benefits.