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.   

Dos and Don'ts After an Autism Diagnosis

My kids (left to right): Tate, Titus, Emily, Isaac, Sydney (above), Regan, Levi, Bailey

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.  

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Tate at Preschool

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.    

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other. 

Tate's poor motor skills and refusal of foods
often meant someone needed to help him.
Older siblings were always willing to help.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

If you liked this post you might also one of these: It's Not Such a Bad Life or: 15 Truths of Parenting Special Kids or: There is No One to Blame.

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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