Celebrating The Holidays With Autism

The preconceived notions about what it would be like to parent this child of mine, and the reality we live, are sometimes so far apart it is mind boggling. I had no idea the kinds of challenges we would face, or the immense joys we would experience. I had no idea that my son would lead me into a community of some of the most amazing people I’ve ever had the pleasure of knowing. 

When I started blogging, I never imagined more than a few dozen people would read what I wrote. I never imagined that I would hear back from hundreds of people and get to share in their joys and frustrations. Life with autism is interesting. Especially, this time of year. 

You might recognize some of these scenarios, as I borrowed many of them from you. Many of these we have experienced right here at the Smith house too. 

Decking the halls can be a bit challenging for some of us.

What can be more fun than Christmas shopping? Actually, almost anything. 

And when you are out shopping, you might have the pleasure of running into a Santa!

But no worries, if you do not see Santa, there's always writing to him! We actually have Tate's letter to Santa on the kitchen table right now, ready to mail. Tate told Santa that he NEEDS a lego set that hasn't been made in years. Of course I found it on eBay for four times what it would have cost me originally. But Santa really needs to deliver. 

One year I helped a friend find elevator parts for her son with autism. Elevator Parts. They are his passion. If you think about it, most of us get useless gifts for Christmas. Why should people with autism be any different? People with autism can be hard to shop for sometimes, but they often have no trouble telling us what they really want.

Visiting in our home can take a toll on a person's self-esteem. 

Christmas Dinner. We have the same menu most years. So does my son Tate. Dinner Rolls. Nothing more. Nothing less.

I've heard from so many from the autism community that wish for less "advice" during family get togethers. People mean well. Most of them anyway.

Let me finish with one straight from our home. Tate is the tradition enforcer. Sometimes we did not even know we had started some of them, as with many of the other precedents we have accidentally set. Who knew that The Grinch is a Monday movie and Rudolph is only watched on Tuesdays? 

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Not in Kansas Anymore

We are not in Kansas anymore. We are travelling this weekend. Today, my nephew got married in Texas, much to Tate’s annoyance. 

Tate has known about this event for months and months, and the specifics have dominated much of his time and energy. I think Tate even went through the steps of grief before we came. There was denial, anger, bargaining, depression, and finally acceptance. Tate has been resigned for several days to the fact that he would indeed be coming with the rest of the family for this wedding. 

Sydney and I actually came to Texas several days ahead of my husband and sons. Trying to make things as easy as possible on the guys, I packed them before I left. I put Tate’s clothes in a brown paper bag for his dad to later place into their suitcase. I wrote on the paper bag with a marker, reminding them not to forget Tate’s toothbrush. And after I got that done, I drove away. And then I started getting texts from Tate, as did all his brothers and sisters and his dad. That brown paper bag was quite offensive to Tate. 

This is not the first time Tate has gone on a trip with us, determined to make it his last. He’s been to several college graduations out of state, and a couple of other weddings. Each time he goes through all the same steps, trying to convince me how unnecessary these trips are. 

This time is the first time that Tate has planned a retirement party to seal the deal. In our hotel room tomorrow, before we head for home, Tate will be presenting a speech that he has written. He is officially retiring. I almost feel like I should have gotten him a gold watch for the occasion. 

It does not seem to be the travelling itself that Tate hates, as much as it is the absence of being home. These trips ruin Tate’s regular routine, and infringe on his need to keep things predictable and the same. He is way out of his comfort zone. Tate has been pacing and wringing his hands at the hotel and at the wedding reception, unable to relax. Tomorrow, we will head for home. Monday morning Tate will wake up in his own bed and everything will be right in his world again. Well, until the next graduation or wedding, which according to Tate had better be in Kansas, on a Monday, or he is NOT coming.  

Note: Night 2 there was no sleep. Not one minute of sleep for Tate. And this is the most recent text...

Tate's dad and I are leaning toward an adult babysitter next time we have to travel. UGH!

My heart isn't ready yet to listen to reason

My dad has been gone now for over two months. Some days are still really hard. One of the hardest was about one month ago when daddy had been gone for a full month. That day was really hard. I journaled at the end of that hard day. Journaling is my therapy.

I stood in front of his closet, and pulled his shirts from their hangers, one by one. Some I folded and stacked in a pile, others I wadded for the trash. Mamma sat and watched, making comments about each shirt. Some he’d owned for thirty years. A few were much newer. Almost every one held a memory for me. I had been avoiding this task for a month, needing to keep Daddy’s presence in the house just a little bit longer. Somehow, his things were doing that for me. But slowly, one by one, his things were being given away, or thrown out. 

As I took each shirt from its hanger, I held back my tears. Crying sure wouldn’t make the task easier. But then I reached into the closet and pulled out a pair of khaki dress pants, his belt still through the loops. This was the last pair of pants dad wore before pajamas became his permanent attire, and I remembered the day he wore them last. I hugged him that day, right before he got into the car in the church building parking lot. He looked weak and was breathing heavy. 

I pulled the belt from the loops and couldn’t hold the tears back any longer. He is really gone. 

After the closet was empty of all Daddy’s belongings, I moved to his dresser drawers and began emptying those. Missing from the top of the dresser was the ceramic dish that he’d always emptied his pockets into.  It’s across the road, on my dresser in my own bedroom now. But it doesn’t really belong there. It belongs on Daddy’s dresser, where it has been since I was a little girl. 

I keep asking myself “Why do these material things matter to me?” I know better than to define people by their belongings. Dad wasn’t defined by his clothes, or his shelf full of John Wayne movies, or his favorite chair. 

I remind myself every day that his body is gone, but he has a soul that is living on, much better off now. He’s cancer free and definitely not missing his life on earth or his things. But my mind and my heart are in a tug of war. My heart isn’t ready yet to listen to reason.

That was my journal entry that day. And today I looked back at it and added this:

A month ago, I took daddy’s clothes to the Goodwill store. I handed them the bags of clothing and a few things on hangers. But when I got to the bottom of the pile I felt panic. I didn’t want to give Dad’s clothes away! So I left one gray suit in my car. I told myself I’d keep it just a little longer and drop it off another day. 

And one month later, two plus months after my daddy left me, I am still driving around with one of his suits in the back of my car. I know it is getting more wrinkled and dusty with each passing day. I’ve had dozens of opportunities to donate it but I always tell myself “I’ll keep it just a few more days. Then I will leave it.” 

I know that I will eventually let it go, but my heart isn’t ready yet to listen to reason. 

Being Strong During the Toughest of Times

A few evenings ago you told me that you are too weak and tired to go on, and you need me to be strong for you. You, the strong one, my man of steel, need me to help you during the hardest time of your life. You asked me to stay close to home from here on out, because you feel safer knowing I am close. Me, the weak one, your little girl, makes you feel safer. How can that be? I thought you were invincible.

The surgeries, the needles, the drain tube, and the awful diagnosis scared me, but not you. You stayed strong. You said comforting things to me, and told me you were not afraid. And you were not.

Sixteen months ago, the doctors said you had weeks to live. I said, “You don’t know my dad. He is not like most other guys.” 

But things are getting harder physically now. You are tired. It turns out that you, my superhero, can get tired, too tired to carry on.

You have taught me so many things over the years, and you are still teaching me. These last few months you have been teaching me how to be strong during the toughest of times. You have so much wisdom, and so much faith. You have been such a great example.

My mind is whirling. I am playing all of my favorite times with you over and over again in my head.

Remember when you taught me to drive? I was really struggling with the manual transmission. The drivers’ ed teacher tried to teach me about the friction point and how to apply the gas while letting up on the clutch. I couldn’t get it right. But you taught me in one evening in your old Nissan pick up truck. I wrecked that truck once. You never even frowned at me. You were just glad I wasn’t hurt.

I was your passenger the last time you were behind a steering wheel. Your reflexes had slowed, but you did not scare me. I had more confidence in you than you did yourself. But, when you were sure you no longer wanted to drive, it only meant that I got to spend even more time with you, driving you everywhere you needed to go. You planned all your outings around lunchtime so you could always treat me to lunch.

Remember teaching me to shoot? You set up targets in the garage so I could practice with a pellet gun, and then you took me hunting. When I repeatedly begged you to let me shoot your shotgun, you stood right behind me to absorb the recoil that I was so sure I could handle on my own. That kick was hard, and would have knocked me down. You were ready with your body braced right behind me and you caught me. You always let me try to be independent, and then stepped in to catch me when I had overestimated my ability.

I wish you could be there forever, standing right behind me, ready to absorb the shock for me. The shock I will feel soon will be far worse than a physical one.

Remember the times you took me coon hunting with your dad? I know you both had to walk so much slower with me along. Maybe you knew you were helping me to make memories that would last a lifetime. And maybe you knew that someday you would be the one asking me to walk so much slower so you could keep up with me.

The past few days your steps are shaky and unsure. You could not make it from the bedroom to the living room this week, and you sat down in the walker so I could move you. I made a very awkward attempt at pushing you, then walking backward and pulling you. We both chuckled at my attempts. What if that is the last time I hear you laugh? Oh how you have made me laugh over the years.

Do you remember surprising me with my first car? You sent me to the garage, and you were close behind because you wanted to see the look on my face when I discovered that car in the garage. But I still remember the look on your face. You were as excited as I was! I think that very used orange Ford Pinto was as beautiful to you and I as a shiny new sports car would have been to most folks.

Once I was four hundred miles from home and that old Pinto was making a strange noise. You spoke on the phone to a mechanic who could not find the problem. You told me to start for home, and you stayed near the phone until I walked in the door. I knew that if I had broken down anywhere along the way, you would have done whatever it took to rescue me. There have been so many times in my life I have called you to come and rescue me.

Recently, I have had to rescue you on occasion. I would gladly keep on rescuing you if only you could stay with me a little while longer.

Do you remember when I called home from college to tell you that I had met the man I was going to marry? You said, “Does he know that?” I answered, “not yet” and I described him to you. I could almost hear you smiling on the phone as I told you about his love for God, his ability to defend the truth, and his hard work ethic. I was sure he was the one for me because he is so much like you.

Remember all the games of Canasta? Remember all the pony rides and fishing trips? Remember teaching me to ride a bike, catch a baseball, hammer a nail, start a fire and saddle a horse? I thought I’d never learn to tie that cinch knot, but you just kept showing me day after day until I had it. Every time I tie a cinch knot I think of you and how patient you were.

Thank you for all the times you pushed me on a swing. Thank you for all the times you baited my hook, and gave up fishing with your own pole to help me with mine. Thank you for letting me come to work with you sometimes so I could see what you did. Thank you for making sure I never missed a church service. Thank you for insisting I go to college, and for all the overtime you worked to pay for my education. Thank you for helping my husband to wire, plumb, trim and paint the house we built. Thank you for loving my kids and giving them such great memories to hold onto.

Thank you for teaching me how to be strong during the toughest of times.

Note: Sixteen months ago, my Dad was supposed to be breathing his last. He lived much longer than the doctors anticipated. I have valued the extra time so much. This is the post I wrote sitting in his hospital room all those months ago: Take Another Breath Daddy

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.