Tuesday, February 14, 2017

Once Upon a Time: Autism

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.

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.   

Friday, January 13, 2017

Puzzle Pieces Are Conversation Starters

I once started a blog post with “You may be an autism parent if”. It was a fun article and well received by my readers. One of my statements was: “You may be an autism parent if you have tee shirts and jewelry with puzzle pieces on them and your car sports an autism awareness bumper sticker”.  It’s true that over the years I have acquired several tee shirts that declare myself a part of the autism community. My favorite necklace has a puzzle piece charm and my son’s initial on it. Why do I do it? Why do I like to wear clothing and jewelry that identify me as someone whose life is touched by autism?   

When I walk out of my home wearing clothing or carrying a tote embellished with the Autism Speaks’ “light it up blue” slogan, I never know what kind of interactions might be initiated because of it. Likewise, when my keys are swinging from an autism awareness keychain, or I’m wearing a puzzle piece around my neck, I am sometimes stopped and asked about autism.

You should try it and see what kinds of people you meet! 

As you stop to get your coffee, a barista might ask you what “light it up blue” means, giving you the opportunity to talk to him or her about autism. We cannot have acceptance without awareness, and your shirt may help you to spread some awareness.

At the grocery store, a clerk may notice your tote and tell you her nephew was recently diagnosed with autism and her family is looking for services. You may be able to give her an idea about where to look or who to contact. All because of a tote bag with a puzzle piece on it.

In the waiting room of a doctors’ office, you could sit down across from the parent of a young child with autism. He comments on your light it up blue sweatshirt and tells you their story. You might compare services and be able to give him the name of the doctor you like best in the area and the therapies you’ve found successful with your child. And you might learn something from him that you’d like to research for future reference yourself. Who knew that sweatshirt you bought would make a difference for you or for anyone else?

You may hand your keys to a mechanic the next time your oil needs changed. He will look down at the keychain and notice the puzzle pieces dangling there. He could ask you if you have a loved one with autism. He may ask if you’ve got a favorite book about autism that you could recommend. All because you spent a few dollars on a keychain and spread some awareness.

You may sit down next to a young mother tomorrow in a public place. She has many questions about her young son who is showing signs of a developmental delay, but she’s been afraid to seek answers. She could notice the puzzle piece charm dangling from your necklace and ask you if you know someone with autism. By sharing your story, the young mother will be encouraged.

There may be ripple effects from using autism awareness merchandise that you never even know about. The next time you walk out the door, wear something that identifies you as a part of the autism community. Let others know that you love someone with autism and you’re willing to talk about it. Don't have a shirt, a tote, or a keyring? Take a look here: Shop Autism Speaks

This is my second in a series of blog posts for the Autism Speaks Store. My first can be found here: "If you give a mom an Autism Speaks gift card"

Tuesday, January 10, 2017

Autism parents have a lot in common

My son Tate is fifteen. Tate has autism. He was about two and a half years old when he was diagnosed. Parenting a child with autism is challenging at times, but also very rewarding. We have had a lot of interesting experiences over the years and gotten to know a lot of others who are also a part of the autism community. So many of our stories and experiences are similar. I recently decided to illustrate some of the most common and repeated scenarios I have heard about from others in the autism community and/or experienced myself. They are in no particular order.

If you can relate let me know. I will be adding to these so tell me what kinds of things happen to you the most: annoying things, rewarding things, kindnesses shown, and the ways you’ve had to educate others. I would love to hear from you. Contact me on my Facebook Page called Quirks and Chaos. The comments are temporarily turned off here.

We are all in this together!  -Lisa

You might also like this post: You may be an autism parent if...

Friday, December 9, 2016

Christmas with Autism

Christmas time, the most wonderful time of the year! Or is it?

Choosing a Tree, 2015
My fifteen-year-old son Tate has autism. He is excited about the approaching holiday. He does look forward to Christmas, but not for all the same reasons many of us do. 

For many of us, Christmas means family gatherings, jingling bells, shopping, baking, visiting, wrapping, music, colorful lights, evergreen trees, and maybe even snow. The wonderful smells, sounds, and sights are a welcome vacation from a regular routine for the majority, it seems.

But for some of the autism community, the festivity assaults the senses and causes distress. The gatherings are too invasive, the smells and sounds disturbing, the sights unsettling, and the break in routine almost agonizing.

Parents, who long before a diagnosis, may have dreamt of Christmas photos with Santa, trips to seek out the perfect evergreen, and Tonka trucks under the tree, come to accept a different reality. The Santa at the mall terrifies their child, a trip to a tree farm is out of the question, and that Tonka truck is only ever used upside down, to spin the wheels.

There will be no big feast on Christmas day, eaten around a large table, surrounded by family, for the family member with autism. He has a different kind of Christmas. He wants --No. He NEEDS-- to eat in his room. Alone. His cousins ask why he won’t play with them. His grandparents wonder why he cannot hug them. Some relatives raise their eyebrows at the way he’s being so “coddled”. It’s hard to understand if you do not live it.

And then, there’s the gift giving and receiving. Some of the things my own son has asked for over the years are challenging to find. The ring from “The Lord of the Rings” movies is a current wish. A hover-board (that really hovers) like Michael J. Fox rode in “Back to the Future” is on his Christmas list this year. The tablet of Ahkmenrah that brought the displays to life in the “Night at the Museum” movies was once on his list. Of course, I can often find reproductions of these kinds of things and those are sometimes accepted without disappointment. A friend crafted a replica of that magical tablet that brought the museum exhibits to life, and Tate loves it. I am dreading the day he asks for the invisibility cloak from “Harry Potter”. There are some things even Santa cannot do.

Many children with autism are similar to my son and very interested in movies and the props. A lot of kids with autism become very focused on other things. I commonly hear about preoccupations with dates and history, technology, video games, math facts, dinosaurs, trains, super heroes, weather, or ocean life, to name a few.

Some people with autism have interests that are more notable. My own son is captivated by our washer and dryer, but had a love affair with the vacuum when he was small. We had very clean floors for years. Now our laundry hampers are never allowed to become full. I have met several in the autism community who have similar stories about their children and a fixation on household appliances though, so this is not really rare it seems.

However, interests can be more unique. Two different people have told me recently that their children with autism have a fixation on ceiling fans, the different models, and how they work. Another has a child interested in rotary dial telephones and their parts. Yet another parent told me their child is interested in lawn mowers, even memorizing the model numbers. One child is enthralled with Boeing aircraft, and ONLY Boeing. A friend in Pennsylvania told me last week that her son is fascinated by elevators. On his Christmas list are elevator parts. He wants button panels and indicator lights. Seriously. His heart’s desire is to have an elevator parts collection. What is a mother to do? Anyone know of an elevator parts graveyard she can visit? 

What are some of the things your children with autism are interested in? How many mountains have you moved in the past so that your child could have that special gift under the tree? We want to hear your stories. 

If you liked this post, you might also like to read about another holiday: When Halloween is not about the candy