Saturday, April 29, 2017

When Even Numbers Become Odd

The first time it happened I scratched my head and dismissed it as odd. The second time I raised my eyebrows and thought “Oh no. Please let me be wrong”. The third time I knew: my son with autism has added to his rigid routine. There is one more hoop he now jumps through so he can keep his world well-ordered and balanced.

"I'm makin' waffles" is a favorite
movie line at our house.
Routine is very important in our house. My son with autism needs many things to stay the same. Sometimes those routines are easy to accommodate, and sometimes they are not. Sometimes they are harmless, and sometimes they are not. Sometimes, knowing the difference is tricky. The same breakfast every morning has not been an issue that mattered to us. Two waffles and a glass of milk: nothing peculiar about that, right?

Most mornings for the past two years, my fifteen-year-old son Tate rises each morning to fix himself two toaster waffles. Up until a couple of years ago, I prepared his waffles, and if I was unavailable then he was able to get himself a bowl of Cinnamon Toast Crunch, his favorite cereal. When Tate showed an interest in making his own waffles, I taught him how. He had a very hard time spreading margarine on them so he chose to eliminate that step and do without. He’s become very independent in the mornings, and I have been encouraged and relieved that he can do so much more for himself now.

Recently, I noticed Tate had three waffles and I was tickled to see him “mixing it up” a bit. The number two was not a fixed number for him! The next few days he was back to two waffles. A few days later it was three again. And then the third time I saw he had three waffles, I realized there is a pattern. On the days Tate’s little sister chooses to have a waffle (yes “A” waffle, as she only eats one), those are the days he has a third waffle. So, I began to experiment. If I also had one waffle on the days my daughter chose to eat one, then Tate had two. Yesterday, I asked Tate if he were going to eat two or three waffles. He told me he did not know, and that he needed to see the box of waffles. I asked him why, but I already knew. He said he needed to count the waffles. I counted and told him there were seven waffles. He said he would have three. I told him that I was going to have one too. He then told me, “in that case, I will have two waffles today.” He does not want to have an odd number of waffles left in the box. It must be even.  The number of waffles on his plate did not matter, but the number left in the box did.

But before I even had time to think long about that issue, a similar issue came up.  

If you have followed my blog long, you will already know that Tate has a love of laundry, clean laundry. He brings me the hampers in the house every-other-day, usually on his own, and becomes my taskmaster until I have completed it. Once the family’s clothes and all the towels are clean and in their proper places, he believes his job as my supervisor is over, until the next time. Part of Tate’s routine is to bring the hamper from his own upstairs bedroom, along with the hamper from the bathroom upstairs, one in each hand, down the stairs. He hauls them to the laundry room, where he dumps them. It is sometimes quite a heavy load but he is a strong guy and those hampers come down as a pair. Always.

Last evening, I was preparing to do laundry and I asked Tate to bring me his hamper. Tate usually follows directions nicely. Even if he verbally objects to my request, he usually complies. But this time, he did not move. He told me he could not get his hamper because someone was in the shower upstairs. I was preoccupied with my own thoughts and told him that I had not requested the hamper from the bathroom, but only needed him to bring me the one from his own room. He repeated that he could not do that until the person in the shower was finished. I stopped what I was doing and looked at him. I insisted that he go bring me one hamper now and then he could bring me the other later. He slowly turned and went up the stairs. He returned with his hamper, looking visibly pained. He then went back upstairs to wait at the bathroom door for the other hamper to become available to him. I had always assumed he brought me two hampers at a time, out of convenience, not as part of a compulsion.

And so the turmoil inside my mind begins: “Does waffle counting ‘hurt’ anyone? Does the fact that Tate prefers to bring those two hampers down together, really make a difference in the grand scheme of things? I can let these things go. This is not a big deal. After all, things like his love of laundry are a bit odd, but we work around that. And only getting a haircut on Thursdays can be managed most of the time”. And then I have the other thoughts: “Clean laundry is something everyone needs, and doing the laundry is a skill he can use. But a bag of even numbered waffles is not. This will just be the beginning if I ignore it. We have battled things much bigger than this and come out victorious”. I know from experience that I have to work hard to eliminate this, before it rules his life, and the lives of those around him.

Knowing that some of Tate’s rigid eccentricities over the years have become a real handicap to him, gives me the motivation that I need to resolve myself. I will begin immediately to enforce some new rules. There will be a two waffle per person limit at the Smith house now, regardless of the number left in the package. And hampers will come down the stairs one at a time. If this is like past behaviors we have dealt with, then we are in for a rough three or four weeks before Tate can breathe easy about breaking his new ingrained rules and routine. 

When Tate was younger and demanded we drive the same route to any given place, we had to use some tough love to teach him that the path did not matter as long as we got to the desired destination. When he tried to assign us all seats in the living room, we had to use some tough love to teach him that he did not get to choose for people where they would sit. These things are no longer a problem for Tate. But what if we had not tried to help him to overcome his unrealistic orders? He would be enslaved to the routines that he now finds unnecessary. And our family would be too. Yes, the next few weeks will be tough ones, but the benefits of the hard work will far outweigh the short-term peace I could have by ignoring the new hoops Tate has erected to jump through. 

Note: After explaining to Tate that I had a couple of new rules, the hampers coming down one at a time does not seem to be nearly as big of a deal to him as the new limit on waffles. It did occur to me that he may decide he is only going to have ONE waffle now some days. I may have to work hard making sure some days we are left with an uneven number of waffles. But then: who is obsessing over the number of waffles in the package? Me or him? This is not an easy tight rope I am walking on. 

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