Forks Can Be Dangerous and Other Tips From Tate

My fourteen-year-old son Tate was born with autism. In my last post I spoke of the evolution of autism in our home, how I used to feel about autism, and how I have come to terms with it. There was a time when I never would have believed I could easily laugh about our situation, but I do laugh now. A lot. Every single day. I do not necessarily laugh AT my son. I do not really laugh WITH my son either, as he does not usually understand why I find things funny. I laugh because I enjoy my son and I enjoy the funny things he says and does. Kids are funny, autism or not. I began illustrating some of our humorous moments so that others might also be able to smile, understanding that autism is not always doom and gloom.

Trying to see the world through Tate’s eyes is challenging at times, yet somewhat entertaining much of the time too. He has a unique perspective and often a surprising way of looking at things. Tate offers us advice and gives insight often. Here are some examples:

One of the biggest challenges we face, living with autism, is communication. There is miscommunication so much of the time. I can walk away from Tate, believing he understands the information or instructions given to him, when in fact he had no idea what was said. It’s not that he is not trying or does not care, although sometimes that may be the case. I believe he often “gets lost” in all the language and becomes overwhelmed trying to process it, so he tunes us out. And other times I am sure he fully heard but misunderstands. Regardless, we find ourselves in interesting conversations. Sometimes I feel like I’m in the old comedy routine, “Who’s on First.”

We work on communication and conversation skills constantly. Believe it to not, Tate has come a very long way. Tate sees small talk as a waste of time and really does not understand why anyone would want to talk about things he has no interest in himself.  

I received a question on my blog page from a little girl today. She asked me if having a kid with autism is as hard as everyone says. I told her that autism is hard, but it is mostly hard for Tate, not for me. I explained to her some of the challenges he faces now and some of the challenges I believe he will face in the future. But then I told her that being Tate's mom is not hard because I love him so much. He is a fun kid and we have a really good life with lots of laughter. Putting it into words easy enough for a child to understand may oversimplify it just a little but the bottom line is: Regardless of the struggles we face, Tate is my son and he means the world to me. 

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The Evolution of Autism

In the past twelve years I have heard, “Autism? What’s that?” from more than a few people. And I’ve patiently answered. After all, twelve years ago I had almost no idea what autism is.

Originally, when asked, I quoted a definition of autism that went something like, “Autism is a neurological disorder that limits a person’s ability to communicate and learn from their environment. A person with autism may have trouble with communication and social skills, and they might engage in repetitive behaviors and have limited interests.” Of course, if given the opportunity I would expound on that definition significantly, because offering that general and very broad definition never really painted a very clear picture of who my son was and what his differences were.

Many, many times, I probably left the impression with people that autism is a very big and scary beast. Back then, that is what autism was to me.  

When we first encountered autism it seemed like a powerful villain in a dark movie. It lurked in shadowy corners like a kidnapper who was holding my son hostage, just out of my reach. Autism frightened me like nothing I had ever known. And my definition of autism reflected that. Autism does not intimidate me now like it did back then so I can define it just a little bit differently than I used to.

Ten years ago, autism meant: discrete trials and flashcards, long team meetings, therapists in my living room for hours at a time, and a second mortgage to pay for it all.

Autism was stereotypic behaviors like toe walking, posturing, squealing, and my constant reminders of “calm hands please.”

Autism meant drool bibs and diapers long after peers outgrew them.

Autism was a love affair with vacuum cleaners.

Autism meant memorizing acronyms that everyone around me seemed to already understand without pausing to decipher, always leaving me a sentence behind while I tried to keep up.

Autism meant learning a whole new vocabulary and using words like perseverate and echolalia on a daily basis.

Autism meant owning every character from the Thomas series, so they could be lined up and worshipped, but rarely played with appropriately.

Autism was staying awake for hours at night to make sure Woody’s hat did not come off his head. And autism meant if the crayon from the sacred Blue’s Clues notebook was missing, we searched as long as it took to find it.

Autism turned bath time into a painful battle and haircuts into torture.

Autism was locked doors and the fear of wandering.

Autism meant, “Please. Please. Just take a bite” and “He hasn’t pooped in days.”

Autism was transition warnings, meltdowns, visual schedules, and routines without flexibility. Autism made me hold my breath, always waiting for the other shoe to drop. 

Autism meant anxiety and so many fears. There was the fear of storms. And loud noises. And people in costumes. And dogs. And bats (because there might be one somewhere out there that would swoop down and flap in his hair). And police officers. And other children.

Autism meant I was constantly explaining behaviors and making excuses for the differences.

Autism meant that I dreaded detour signs.

            

That was a lifetime ago, but only yesterday. Somewhere along the journey, as my son has matured and time has passed, how I see autism had changed, It has changed just a little in some ways, but a lot in others.

Perhaps it is sort of like Stockholm syndrome and I now identify with my son’s captor.

Perhaps it is because I have just come to accept what is.

Perhaps it is because all the early intervention helped to eliminate some of the hardest parts of autism.

Perhaps autism has evolved as my son has aged.

Perhaps it is because autism was never really as scary as I thought it was in the first place.

For whatever reason(s) I have grown somewhat complacent with autism.  I do not embrace autism. I do not even like autism. I just do not fear autism anymore.

It was definitely a gradual thing. It did not happen in one defining moment. It’s not that we have slayed the proverbial beast that I perceived autism to be, or even that we have tamed it. Autism is still with us. It still sometimes seems bigger than us. But mostly it is in the background. We used to revolve around autism. It was at the center of everything. But these days,  most days, it lives with us quietly.

These days autism means IEP meetings that go well, and an advocate who is like family to us.

Thomas the train and Blue’s Clues have been forgotten. Now, autism means shelves and shelves overflowing with movies and obsessions about movie personalities.

Autism means Legos.

Autism means that we only get haircuts on Thursdays but they are not traumatic for us.

Autism means a peanut butter sandwich, chips and 3 cookies presented in the same way every day for lunch.

Autism means cheese pizza, lots and lots of cheese pizza.

Autism is literal thinking and explaining the punch line of a joke.

Autism is funny misunderstandings.

Autism means peers who are willing to help and educators who genuinely care about my son.

Perhaps in years to come I will feel differently. It could be that as my son’s peers begin to drive, go off to college, and wed, my vision of the ugly monster will be resurrected. I can imagine as I get older and my son needs a sibling to step into his life as his caregiver, that I will redefine autism once again. But for now, these days, autism is just a quiet part of who our family is.

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An Autism Mom's Thoughts on Disney's Finding Dory

My son, Tate, and I just came away from the Pixar movie, Finding Dory. It’s been on our calendar for weeks, as are most animated films. Movies are Tate’s “thing” and we rarely miss one he shows an interest in. 

I had not seen a trailer for Finding Dory. The only thing I knew going into the theater was that it was a Pixar film and a sequel to Finding Nemo. Finding Nemo was a favorite of Tate’s when he was young, and Tate has much of the dialogue memorized. I knew Tate was going to love the movie, but I did not expect to be overly interested myself. I had no idea that three blue cartoon fish, a couple of clown fish, and a grumpy octopus (make that a septopus) would draw me in and cause me to feel gut wrenching empathy and compassion during parts of this film. Throughout the film I found myself comparing Tate and autism to Dory and her own disability. Dory was unable to remember the things she needed to do to be successful and to keep herself from harm. I saw myself in the caregivers who surrounded Dory and tried to keep her safe. 

As a very small fish, Dory’s parents tried so hard to surround her with rules and plans. They taught her rhymes and songs to help her remember the safety rules. They taught her to repeat her name and her diagnosis. They showed her the path back home over and over and marked it for her. And still Dory’s mother cried and worried because it might not be enough.

I remember all the discrete trial programs we had for Tate. He memorized his parents’ names and his address. Those things meant nothing to him, but he could spout them if asked. In the autism community we have Tee shirts that help our kids tell others they have autism. There are ID bracelets available. We can buy signs for our cars and even stickers to put on their bedroom windows for rescue workers to see. Some of us have service dogs and special locks on our doors. We are so very careful. And yet, we worry. What if….

Dory, as a young fish, could not advocate for herself or find help once she was lost. As an adult fish she still depended on others to keep her safe. At fourteen years old, Tate cannot communicate well enough to advocate for himself amongst strangers, nor would he know who to turn to and ask for help. Through no fault of her own, Dory made tremendous mistakes at time and she felt guilty because she could not do the things she felt she should have been able to do. I hear Tate constantly apologizing for things he cannot do because of his autism. I assure him that there is no need to apologize and my heart aches for him. 

Nemo was a character that never once gave up on his friend Dory. Nemo KNEW Dory was capable of more than she was being given credit for. He was always supportive and patient, ready to help but willing to wait to see if Dory could do it herself. Nemo is much like the typically developing friends Tate has at school. They encourage him and know just when to step in to help. 

Dory’s caretakers were understanding and patient with her most of time but occasionally when things were tense, someone snapped at her, making her feel like a failure. At one point in the movie, Marlin criticized Dory and it crushed her. It rarely happens in our home. But I’m not perfect. Marlin spent a few minutes in denial that he had said anything wrong and then much longer beating himself up for what he said. Once again, I saw myself in the animated character on the screen.  

Tate made "Nemo" in his art class this past school year.

Marlin underestimated Dory several times in this movie. Of course she still had special needs and needed help but there were some things she could do well. Once again, I saw a comparison here. There have been many times I have doubted Tate and he showed me just how wrong I was. At the end of the film, we saw Marlin trying so hard to trust in Dory like her friend Nemo did. But even after he had “learned his lesson” he still followed and spied from afar to make sure Dory was safe. And Dory knew. Dory knew that Marlin was watching and there for her if she needed him. It is such a fine line we walk (or swim).

If you liked this movie review, you might like this: A Review of Disney's Inside Out

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It's not that complicated! Or is it?

Our brains can take a complex task with a lot of steps and many different scenarios and put them all together into a simple daily routine that comes very easy to us. But to put that task into words and to teach that task and all the different scenarios to a person with autism is daunting. For example: walking through door.

Who knew there were so many things to consider when you need to get into a building or a room?

You might think that a written procedure for getting into a room or building with a closed door could not possibly be that complicated to compose. It might look something like this:

·      Step One: Approach the door.

·    Step Two: Reach out and grasp the door handle or knob and turn it if needed.

·      Step Three: Push or pull the door open. Open the door wider than your body width.

·      Step Four: Walk through the opening.

·      Step Five: Allow the door to close, or push (or pull) it closed as needed.

However, these steps are actually not enough. As a matter of fact, I cannot imagine being able to create a list that could cover all the things I know about opening a door that my son needs to be taught. I’ve been trying unsuccessfully for years to teach Tate all of the steps and rules the rest of us have about walking through a door. What do I mean? Why can Tate not open a door and walk through it? Oh, he has the five steps above down without a problem. It’s the rest. What do I mean: “the rest”? Take a look at the procedure most of us use:

·      Step One: Approach the door, but be aware of all the people around you. Do not brush up against anyone or get in front of anyone who is also waiting to go through the door. Wait for your turn patiently.

·      Step Two: Reach out to grasp the door handle or knob. If someone else is close and they are also reaching for the knob, look at them. By looking at their face and by seeing where their eyes are looking, you might be able to tell if they would prefer you open the door of they would like to open it. Watch their body language. If they quicken their pace, then let them reach for the door first. If they slow down, then you go ahead and reach out for the door. You could also just say, “I’ll get the door for you” if you want to open it, or “After you” if you prefer they open the door.

·       Step Three: Open the door or allow the other person to open the door. If you open the door, do not just assume you should go through first. You might need to open it and hold it so they can walk through first. There are things to consider. Are their hands full? Be sure and hold the door and hand it off to the other person gently if they seem like they are willing to take the weight of the door. If they open the door and step back for you to go through first then go ahead, and then smile your thanks or say, “Thank you.” If the person’s hands are full and you were the one to go through the door first then reach back and hold the door for them. If you watch the other person’s hands and face you might be able to tell if they expect you to hold the door or if they want to hold the door.

·     Step Four: Walk through the door but be sure and look behind you. There may be someone else approaching the door that you should consider. If there is someone only two or three steps away and the door is a self-closing door, give the door a gentle push so the next person can grab the door. If someone is approaching from up to ten steps away, if their hands are full, or if they are on crutches, or if they are elderly and moving slowly, or if they have a dog on a leash, or if they are pushing a stroller, or if they are too small to reach the door, or if they are leading a gorilla by the hand, then hold the door open for them. (I have become facetious here but I want you to see how hard it is to teach EVERY possible scenario!) There are so many.

·       Step Five: Allow the door to close, or push or pull it closed as needed.

Notice the very specific things above: “two or three steps away” and “up to ten steps away.” These are the things I have become very aware of as I have been trying to teach these things to Tate. I’ve become very interested in the social aspect involved in many daily tasks and I have been watching others and breaking down the steps involved in tasks I perform myself. The next time you approach a building to open a door with several others around, notice how everyone seems to know what to do. Watch the same procedure in a downpour with everyone holding umbrellas. The procedure for opening the door is somewhat different as everyone hurriedly closes their umbrella and tries not to get wet, all the while adjusting their moves to fit those around them who are also trying to stay dry. How do we all just know what to do? There certainly was no five step procedure with every scenario listed out for us to memorize.

All these kinds of things have been taught to us by example. We see examples all around us. People are often rushing up to hold the door for someone else who has their arms full. People are constantly walking through a door before me, and then as I approach, they give it one extra push so I can reach out and grab the door. I just KNOW what is and is not socially acceptable when I walk through a door. I know because of the way my brain works. And Tate just does NOT KNOW because of the way his brain works. 

I have tried to help Tate to understand the social cues involved in opening a door for years. Even after much instruction and example we’ve made little progress. This past school year I have seen Tate walk right to the front of a group of people who were patiently waiting to walk through a door and squeeze through ahead of the rest. I have seen him walk up to a door that someone was holding for him to grab, but instead of reaching out to take the door, Tate slid right past and into the building, leaving the other person confused about what had just happened. I have seen him drop a door that he walked through, just as a person with their arms full was just about to struggle through. I have seen him walk through a door oblivious to an elderly person who really needed some help to keep the door open.

I’ve given Tate so much instruction about the door to his school that the last semester he was just trying to time his entry into the school so no one else was around him. He knew he was “doing it wrong” every day so he just decided to do it alone. Major “fail” on my part.

I try to tell myself that these kinds of things are not THAT important. A hundred years from now it will not matter if Tate snubbed someone or dropped a door he should have held. But in daily living, these things can become pretty important. How others perceive you based on your actions determines a lot of things. I want Tate to continue to have friends long after his small circle of friends at the Junior High have moved on. Teaching Tate about body language and how to interpret those things is so difficult, if not impossible. Teaching Tate about how to anticipate what another person is going to do by looking at their face is very difficult, if not impossible. I have found some materials from a real giant of a therapist named Michelle Garcia Winner. She teaches people about social thinking and “thinking with their eyes.” Watching other people and where their eyes are looking can tell you so much. Because Tate has autism and has such a hard time with faces and eye contact I haven’t been able to make much progress in this area. But. I am not giving up. There has to be a way to teach this. A friend with autism suggested I catch Tate on film so he can see what he is doing that is socially unacceptable to the rest of us. I believe I will give that a try.  

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Take Another Breath Daddy

Take another breath Daddy! Because as long as you are still breathing, you are still here with me. Take another breath.

Take another breath Daddy. I need you here. You are always strong when I am weak. I’m not sure I can be strong if you are not here to shore me up and encourage me.

Take another breath. I need to be able to ask your advice. I still have so much to learn from you. No one else’s opinion will matter to me in the same way yours has. I need your wisdom. Take another breath Daddy.

Take another breath. I cannot do all the things you do for me. I rely on you! You help me with things that are small to you but huge to me. You fix my broken furniture and change my flat tires. You help me take my dog to the vet and kill snakes for me. You plow the snow from my driveway. You have always been ready to come to my rescue with a ladder, a mower, a chainsaw, or your tool belt.

Take another breath. I have taken you for granted in the past. What will I do without you here? When you are watching I try hard to make you proud. Will I try as hard without you here? I’m afraid. Take another breath.

Take another breath Daddy. I need to hear your stories. I haven’t memorized all of them yet, even the ones you tell often. I need to hear them all again. I want to hear more about your childhood and your time in the army. I want to hear more about your years of farming and the adventures you had as a mechanic. Lately, you’ve told me a few I’ve never heard before! You might have a few more you haven’t shared with me yet. I need to hear more! I want to remember them all.

Take another breath. You need to make me laugh. I love your silly rhymes, and poems, and songs! They’ve made me smile my whole life. How does one guy have that many witty lines memorized? You have one for every occasion. And yesterday, when you were told what a short time you have left, you did it again. You joked with me about a silly regret and made me giggle in the midst of my grief. Please. Take another breath. For me. Take another breath.

Take another breath. Talk to me. I need to hear your voice. What if I forget what you sound like? You’ve always been just a phone call away. Take another breath.

Take another breath Daddy. I have been watching you for these past few days as you struggle to get enough air. I need you to take another breath because I am not as brave as you are. You do not cry. You are not afraid. I cry. I am afraid. I need you here to be brave for me. Take another breath. I don’t know how to do this. I’ve never lost my daddy before. I need you to help me get through this. Take another breath. Please. Take another breath.

Note: At the end of March, 2016 my dad was diagnosed with lung cancer. We were told he had weeks to live. He has defied the odds. This update is July, 2017 and the end is very near for him.

Mom and Dad's hands, April 8, 2016

Sydney and my dad at a cattle sale

My college graduation, 1985 

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Helping Tate Stay Afloat

Most days I am an encourager. I can play the part of Pollyanna as well as Haley Mills did in the old Disney movie. And I cannot be shaken. Go ahead world: throw things at me. Go ahead autism: hit me with your best shot. I will not be discouraged. I will not be swayed. If there are silver linings to be found I will uncover them.  

But the truth is: even when I am acting the part of Pollyanna I know that Pollyanna cannot make our reality better. She can only make us feel better about our reality.

There are occasional days when I cannot convince myself to play the part of Pollyanna because I have become disheartened. When that happens, I feel like I am just one big heavy sigh away from the edge of hopelessness. Days like that sneak up on me. They come at times when I am tired or when autism shows us something we have not seen before and have not prepared for. They come when autism has won the battle and kept us from teaching Tate one more skill he needs to succeed in this life. 

Those days I feel as if I am drifting in a dilapidated boat in an ocean of autism. My son Tate and I are adrift together, but his disability isolates me from him so it is as if we are each alone. 

Alone.

Together.

There are clouds above but I cannot find the silver linings. Drops of despair pummel me, filling the bottom of our boat with water. The unforgiving drops sting and leave marks as uncomfortable reminders. Tomorrow Pollyanna might minimize them for me but she’s nowhere to be found today.

The school year is coming to a close and it is time for meetings and evaluations and report cards, I hear the teachers say, “We enjoy your son so much! He’s doing well in school!” But then I look at the papers lying in front of me. In a nutshell, they say, “Your soon-to-be high school student is still working on second grade math and reads at a fourth grade level.” How can this be? Pollyanna! Make me feel better! Have you nothing to say this time? Well at least grab a bucket and help me bail! Our boat is sinking! Do you not feel it? HELP ME BAIL! 

Sometimes, on these days the ocean becomes so rough it leaves me seasick and deeply discouraged. I long for solid ground, the ground I used to stand on, before the overwhelming diagnosis of autism. The land of opportunity: where I used to picture Tate going to college, working, driving, and raising a family. It no longer seems like a land of opportunity, but like a land of impossibilities. 

I feel the waves of unforgiving truth trying to capsize our rickety boat. Pollyanna might say things like: “It could happen one day.” Or she might start listing famous people with autism who overcame the odds. She’s always the optimist. 

But deep down, even Pollyanna knows, no matter the age, Tate will probably never be able to problem solve on the level it takes to drive. He will never have the skills needed to fill out a job application or take a college course. He will not be developing the kind of maturity it would take for him to live independently. That’s the harsh reality, and no amount of cheerleading or feel-good sentiments will change that. 

Some days I have to face harsh ugly facts and a Pollyanna attitude cannot dilute the grim reality. 

The boat is still afloat but the waves are coming in over the sides as I frantically bail water. The rain still falls into the boat from above. I cannot let the boat sink! I can swim in these waters and perhaps reach the solid ground. But Tate cannot. 

He does not know yet. He does not understand that he will never truly grow up. His body will age but he will forever need the supervision and guidance he has always needed. 

I have to keep bailing and keep him afloat. 

I search for an umbrella or anything that can help me keep some of the water from falling into the boat. And I find something! It’s not big enough or strong enough to completely block out the rain and the waves. But it helps, just enough. And my resolve is strengthened. 

I have asked Tate’s siblings to make promises to me. And they do. Someday they will take turns keeping Tate safe, helping him to stay afloat. My hope is that the promises they have made me about the future are not unrealistic. I know the promises I have asked them to make are unfair. But autism does not play fair. Autism is unreasonable. Autism steals and cheats. Autism makes overwhelming demands and tries to sink our boat. 

I will continue to balance in this shaky boat as best I can on the hard days, keeping Tate safe until I’m too old to do it anymore. Pollyanna will be around on most days finding all the silver linings.

Smiling.

Encouraging.

Because Pollyanna can make us feel better about our reality, even though she cannot truly make our reality any better.

You might also like to read: The constant drip, Perseveration