Autism…More Than A Diagnosis

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As many of you may already know, I’m a strong advocate for autism awareness. My son James was diagnosed at age three with autism spectrum disorder.  Since then I have made it a top priority to do whatever I can to help him and other children like him. I have committed to help raise money for the local organizations from Myrtle Beach, SOS Health Care and Champion Autism Network.

SOS Health Care provides help to families across the Grand Strand with ABA therapy services. Along with adult training programs, summer camps, social programs, sensory-friendly events, and more. Champion Autism Network is working to make the Grand Strand an autism-friendly travel and living destination.  The organization is bringing awareness and understanding to the struggles and beauty of people with autism.

Every day in April, Autism Awareness Month, we do a social media campaign where we feature a child on the spectrum on our Facebook pages. Every year, we reach more and more people. Folks from all over the country write in with an outpour of love and understanding—it’s so uplifting. Although life is crazy sometimes between work and his therapy schedule, he is the light of my life.

He may only be seven years old, but he has taught me so much. Most importantly, I have learned to look at the beauty within a person and that a little love and understanding can go a long way.

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Recently I sat down to write about our journey with Autism, before diagnosis to now, and I realized that the last 4 years have been a blur.  We have had so many ups and a few downs, it is hard to keep everything straight.  I am working on sorting it all out, because it’s a tale that should be told.

I do not usually go into detail about James’s and his struggles too often.  Mostly because I like to focus on his successes and that is what I always want to celebrate.  Anything he struggles with usually fades away and he becomes successful.  I try not to doubt him anymore.  However until I can get our journey on paper, I want to share some points I shared for a TV interview I did a few years back and some struggles.  Just a little insight on Autism and the effect it can have on families.

What is Autism?

Autism is a nuerodevelopmental disorder that impairs social interaction, verbal communication and repetitive behavior, in a nut shell.

How does Autism Impact a family financially?

Autism can be very stressful on a family financially.  Its estimated that Autism can cost a family up to $17,000 a year.  This is the cost of ABA therapy, speech therapy, occupational therapy, therapy tools and sensory toys & medication.  Not to mention that Autism, many times, has other diagnosis’s attached such as ADA, ADHD, Severe Sleep Dysfunction, feeding disorders, persistent viral infections and sensory processing disorder.  Medicaid is an option after an initial diagnosis is received, but is a long process.  James, finally after almost 10 months just got his medicaid.  But before that our private insurance would cover speech therapy until we met a high deductible and then even then would only cover 80%.

How can Autism impact a parent or guardian emotionally & physically?

For me this is the hardest part about Autism.  Its exhausting.  Therapy schedules, my work schedule, constantly having to be “on” all the time, stress about the future, stressing out every time James has a bad few days, the constant repetitive behavior can sometimes drive you crazy (for example… James use to sing the alphabet over and over and over and over and over again from the moment he woke up to the moment he went to sleep, it was making me crazy) having to pick him up and move him in the case of a melt down until he calms down, the meltdowns can be intense and they can happen anywhere for different reasons and they can leave you wanting to crawl into a dark hole and not come out by the time its over.

Coming to terms with the fact you may have to miss out on certain things that other parents experience, such as soccer games, play dates, family outings, eating out at restaurants, school functions, grand kids, empty nest, obviously some may be more important than others.

I say constantly having to be “on” because it is very important to make sure James is using his words. Sometimes it takes me 5 minutes to get him to tell me he wants milk, even though I know what he wants, it is not good for him if I just give it to him.  He gets distracted with his thoughts and I have to get him to focus.  Or I am “arguing” with him for over an hour because he does not understand why goldfish are not a dinner food or I run out of the only waffles he eats.  Even at home, we work on therapy type activities and its exhausting sometimes getting him to participate.

Stresses about the future:

Will my child ever talk? How about hold a job? Should I be planning one him living with me forever? Will my child ever make a friend? What will happen to my child when I am not around anymore? Will he be the victim of bulling? All these questions about the future I am certain that almost every parent with an autistic child fear the answers to. What I want most for James is for him to be able to be independent.  If he never has children or gets married I can live with.  But not knowing if he will be able to live on his own and care for himself on a day to day basis really stresses me out and it can bring me to tears thinking about it, because what will happen when I am gone if he cannot?

Struggles:

James has struggles in communication;  He can express his wants and needs but can not carry a conversation yet.  James tried hard to interact with other children but need encouragement and some help.  He used to have major digestive and eating struggles but has come a long way over the past 2 years.  James has a hard time focusing sometimes on an activity that is not preferred.  He also can have a difficult time sitting still.

Strengths:

James is extremely smart, has a great memory, can read at a level higher than average for his age.  He has extreme focus when he is engaged, remembers everything, is very active and strong, great balance and coordination.  James has developed great problem solving skills. He is excellent at puzzles, can spell amazingly and can write but still needs encouragement holding a pencil.

Check out the segment with Erica and Brandon from WBTW News 13 from April 2017.. This was such an incredible interview and so thankful to them for helping shed some light on Autism.

Despite all of this, Autism is beautiful… Autism teaches you many things in life that you stay with you. 

I learned that I needed to draw a different picture of what is “normal”.

Autism has taught me to appreciate the little things in life. The smiles, the milestones, the successes, the silly laughs, the silly things they fixate on, and one of my favorites “the line” (children on the spectrum love to line things up, #respecttheline)

It has taught me that pure joy and happiness does exist and it exists in the eyes of James.

Autism taught me what is really important in life.

I’ve learned about a whole world I knew nothing about before James came along and I have been able to help spread awareness & understanding of Autism.

Most importantly I have learned that James is exactly how he is suppose to be.  He is amazing.  I try to think sometimes what life would be like if James was a Nuero Typical kid.  I think what if he didn’t have this pure joy i see in him when he is jumping or flapping with excitement?  What if he didn’t leave me trails of cars, numbers or the abc’s all over the house that make me smile so much? Who would he be if he didn’t want nothing more than hugs, kisses and squeezes to make him happy? What life would be like? The only conclusion i can come up with is Life would be boring. I am a better person and a better mother than I ever thought I could be and it’s all because of James.

When james was first diagnosed I wrote this: I think it kinda explains it all

“Autism is different for every family that is impacted.  For my family, it is learning a whole new level of patience and understanding that you did not know you had.  Its learning to communicate with your child when words are not an option.  It is wanting to call everyone you know to tell them about even the smallest accomplishment.  It is learning that you should never criticize a parent or a child because you do not know their story.  Most importantly it is learning that love does not need any words.  Autism is part of who my baby is but it will not define him and together, with a little understanding, we can all make a difference.”