Once Upon a Time: Autism

2003

Once upon a time, there was a mother who was blessed with a wonderful husband, and a houseful of precious children. The mother was very happy and content.  

Once upon a time, there was a mother who envisioned great things for her children. She imagined drivers’ licenses, high school graduations, colleges, careers, weddings and another generation of babies someday.

The mother spent her days caring for her children, watching them play and learn, amazed at their ability to absorb information from their environment. She often described them as little sponges, once upon a time.

But there was one child, the youngest boy, who was different than the rest. He had stopped absorbing information from his environment. The mother watched him regress, stop talking, and distance himself from his siblings, once upon a time.

Once upon a time, there was a mother who lay awake at night worrying and wondering, wishing, hoping and praying.

And the mother was afraid for her son, once upon a time.

Once upon a time, there was a mother who sat in a doctor’s examination room with her young son and heard the word: autism. The doctor asked the mother questions. The mother asked the doctor questions. The mother cried and asked God questions, once upon a time.

A mother's hopes and dreams for her young son’s future were dashed, once upon a time.

Once upon a time, there was a home filled with echoing, spinning, toe walking, irrational fears, a limited diet, erratic sleep patterns and unusual fixations. The same Disney songs and movie clips were rewound and played over and over again.

A mother prayed often, and begged God earnestly for patience, understanding, and wisdom, once upon a time.

Once upon a time, a mother rolled up her sleeves and learned to be more than a mother to her son. The mother became a therapist, a researcher, an advocate, a cheerleader, and a teacher. The mother fought hard to find all the help her son needed.

Once upon a time, there was a mother in a race against time.

The mother went to conferences and classes. She read books and made phone calls. The mother contacted professors, authors and doctors to ask about behaviors, therapies and outcomes. The mother left no stone unturned, once upon a time.

Once upon a time, a mother invited people into her home to help her son, and the boy made huge gains. The mother was optimistic and talked of “recovery”. She set goals for her son, and took data, celebrating every achievement.

Once upon a time, a mother and father emptied savings accounts, mortgaged the house, borrowed money, and did without many things to give their son every opportunity to be the best that he could be.

The mother went to I.E.P. meetings and learned acronyms like I.D.E.A., F.A.P.E. and E.S.Y. She found out about rights and responsibilities, privacy policies, inclusion, and the least restrictive environment. The mother felt overwhelmed, once upon a time.

But there were remarkable teachers, principals, speech pathologists, and one incredible occupational therapist that wowed the mother with their dedication and ability to teach, once upon a time.

2016

Once upon a time, a mother watched her little boy with autism grow into a young man. The young man functioned at a level far below his peers in many areas, but he was happy. The mother understood that her son might never drive a car, but he had learned to ride a bike! The mother knew he would never do calculus, but he was able to add, subtract, and multiply! The mother knew he probably would not date or marry, but he had real friends who liked him for who he was. And the mother was so proud of her son. 

A son taught his mother much more than she had been able to teach him, once upon a time.

Once upon a time, there was a mother who was blessed with a wonderful husband, and a houseful of precious children. The mother was very happy and content.   

Dumb? Lazy? I Think Not.

As the whole family celebrated a college graduation at Freed Hardeman University this weekend, I was reminded of some of the things that Tate and Sydney will not be able to accomplish. At a reception for the graduates, I spoke briefly with the college president. I told him that our fourth child will be starting college in the fall of next year. Jokingly, I asked him if the fifth child would be able to attend FHU at a discount. It didn’t occur to me to even mention the sixth child or the seventh child to him. I have no real expectations or dreams of college for them. Am I giving up too easily or selling them short? Am I out of faith and hope? I don’t think so. My hopes and dreams for them are just different. I am only being realistic. I cannot afford to set the goals so high they are unachievable. My two youngest cannot keep up with their peers, through no fault of their own. We focus on learning to count coins and do simple addition and subtraction, while peers are learning about division. We focus on reading picture books and answering a few questions correctly, while peers are reading chapter books and taking much harder tests. We focus on social skills because they have to be taught systematically, and we hope and dream that some of these simple skills we are teaching will be mastered and retained. 

My oldest two have now graduated from college. They are going on to do great things. One is a minister and is very talented in the field of graphic design. One is working toward a career in the field of law. I have two who are working to become nurses and their goals are reasonable ones for them. I am very proud of them. But, am I any less proud of these two who cannot yet count change or read age appropriate literature? 

Who is it that works harder? Whose accomplishments are loftier? Is it my twenty-two year old who studied hard and graduated from college? Or was it my developmentally delayed eleven year old, who after months and months of practice, remembered to make eye contact while he told the joke he had been trying to memorize? Perhaps it was my nine year old with a learning disability who got one hundred percent on her spelling test? THOSE were amazing victories!

Tate cannot clean his room without someone helping him. It has to be broken down into small tasks and one-step directions. He cannot put his own laundry away unless it is given to him in very small amounts. Large tasks are just too overwhelming and impossible for him to tackle. Kids like Tate and Sydney are often thought of as “dumb” or even lazy. I can testify to the fact that neither of my developmentally delayed kids are dumb or lazy. They both work very hard and they both are smart. They just do not process information as quickly as we do, nor do they think the same way we do.  Recently I saw a quote that said something along these lines:  "Autism is not a processing error. Autism is a different operating system." That sums it up. 

As my heart swells with pride over the great accomplishments of my college graduates, I will also be appreciating the advances made by my youngest two children. Those gains might seem so insignificant to most people, but not to me. You see, I watch my two youngest work much harder to accomplish so much less. Almost everything comes harder to them. People with disabilities, making gains in spite of their handicaps, and overcoming their challenges daily are also worthy of celebrating. Celebrate with me.  

My two youngest, so easy to love.

Also by this author: "15 Truths of Parenting Special Needs Kids."

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