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 

Dear Autism,

Dear Autism,

I hate you. I hate you for taking my son’s childhood from him, from me. When he should have been absorbing information from his environment, you stood between him and understanding the world around him. When he should have been playing with his brothers and sisters he was at therapies trying to fight through the fog that you create in his world. When I should have been watching him grow and develop I had to watch him withdraw and struggle because you threw so many obstacles in his way. You cost us tens of thousands of dollars Autism. When my son should have been playing with toys, you had him lining them up and spinning them. When he should have been pretending, you had him staring at ceiling fans, obsessing over the vacuum cleaner, and looking at his reflection. When he should have been playing in the dirt, you had him washing and rewashing his hands. You stole his language when he was two. You stole the sparkle right out of his eyes. It was there when he was a baby. And then…. it was gone. You showed up and it was gone. You replaced that sparkle with an anxiety that I could not console. No child should have to endure all the anxiety you burden him with. I hate you Autism. I love my son, but I hate you.

But Autism,

Tate, age four

You did not steal everything. You did not steal his sweet spirit. You did not steal his smile. You did not steal his ability to communicate or his determination. You did not steal all the laughter and you certainly did not steal any of our love. I know you are strong and take more from some than others. Did you go easy on my son for a reason? Did you show up too late to take it all? Did birth order play a part? Was my son just too strong for you? Or did all the therapies start early enough and intensely enough to thwart your best efforts?

Autism, 

I hate you. Yet, not everything you have done has been bad. I have learned so much from you, not just acronyms and statistics, best practice therapies and how to bargain with public school staff. I have learned that little people with special needs are just as amazing and as easy to love as little people without special needs. I have learned that little people with special needs grow up to be big people with special needs and neither are scary or intimidating as I once imagined they might be. You have taught me that people with special needs are all just people, like the rest of us. You have taught me how to love bigger, stronger, harder, and deeper. You have taught me so much about compromise and understanding. My heart is fuller and my empathy skills have been magnified. In spite of the few good things you have done, I still hate you.

I hate you. Nevertheless, I must thank you for something Autism. You have introduced me to a community of amazing people. I cannot imagine what my life would be like having never met some of the people I know now. Many of these individuals have changed my life for the better. They have become some of my closest friends. Who knew my life would be richer for meeting so many therapists, advocates, teachers, families, and students? Maybe you did; but I still hate you.

Autism, 

Smith kids, 2002

You often ruin families financially. You make lives hard. You do your best to cause hardship and division, and ruin marriages. But sometimes, you take a strong marriage and make it even stronger. You tried very hard to cause jealousy and resentment in my son’s siblings. My kids stepped up to the challenge you issued them though. My kids help their youngest brother fight through the fog and confusion you cause him. You, Autism, took parts of their childhood too and robbed them of an enormousness amount of their mother’s attention. Perhaps I should thank you for that as well. My children are stronger and better because they know you. You have taught them lessons in empathy and compassion they never would have learned if you had not intruded on our lives.

Dear Autism,

I hate you. I hate you for taking my son’s future from him, from me. When he should be reading novels, he will be reading picture books and simple chapter books and struggling to comprehend what they are saying. When he should be learning to drive you will be standing between him and a drivers license. You will make dating impossible. When he is old enough to go off to college you will not allow it. My son’s peers will get jobs and earn paychecks but you will not even allow my son to understand the value of a dollar or how to count coins and make change. When my son occasionally speaks of getting married and having children I know you are there, always there, making his dreams of the future unrealistic. I hate you Autism. I love my son, but I hate you.

Autism,
My husband and I are making plans for retirement. You try to get in the way but we plan around you. We speak of the trips we hope to take and we know that we are not making plans for just two. We are making plans for the two of us, our adult son, and you. You will always be with us Autism. And when we are gone? One of those siblings that you have made so strong will carry on with their youngest brother and you. He will be loved and you will be hated then as well. I hate you Autism. I really hate you.

Oh, and one more thing Autism... If your goal was to make me bitter, you have failed. I live with a song in my heart and a smile on my face. My son makes me so happy and proud. All my children do. It is only you I hate Autism; but you do not rule my life or define who we are. You have taken so much from us but you cannot steal our happiness.

Smith kids, December 2014

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I'll Love You Forever

Tonight I ran across a book on my youngest child’s bookshelf. She has outgrown picture books and is reading chapter books now. I am sorting books and deciding which ones should stay on the shelf, which ones I’d like to put up for future grandchildren, and which ones I’ll be donating. This book will be staying on the shelf. The title is, “Love You Forever” by Robert Munsch.

I remember the first time I ever read the words, “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” and choked back the tears. My oldest child was a baby and a friend showed me the book “Love You Forever.” I shared it with friends after that, daring them to read it without crying.

Twenty-five years ago, reading “Love You Forever” for the first time, I did not analyze what it was about the book that caused my tears. I believe I probably wept at the thought of my baby growing up and leaving home. Tonight though, as I held that book, I had far more insight and a considerably larger amount of experience than I had the first time I read those words. I thought long and hard about my children, who they used to be and who they have become. Tonight, sitting in the floor of my daughter’s bedroom, I was looking back, not just forward. Twenty-five years ago, it was very hard to picture the man my baby boy would someday be. It happened though. We blink and they are grown. Four of my children are young adults who I am very proud of, but I do miss the babies they once were. Three of my kids now live in another state. The drive to put the ladder up to their windows each night so I can sneak into their rooms is becoming harder and harder to manage.

Munsch did a great job of depicting a parent’s tenderness for their child at all stages of life, during both serene moments and tumultuous ones. Although Munsch’s book was published in 1986, the whole concept of “you’ll always be my baby” and “I’ll always be here for you” is not a new one for moms and dads. I imagine that concept could be traced all the way back to the very first mother and her children.

Tate and Sydney

Although it had been a while since I last read “Love You Forever,” I really did not need to look at the words as I thumbed through the pages. I’ve read it so many times to all of my children over the years. As always a lump formed in my throat and the tears welled up in my eyes. However, this time I was not thinking of the baby on my lap who would someday grow up and leave home, nor was I thinking of the adult children I miss who have left home. Ironically I was thinking of my two youngest and yearning for the thing I used to dread. If only they could grow up and leave home one day. I want for them what the adult children now have: college, jobs, a car, friends, and the ability to live independently. Tate has autism and Sydney has Fetal Alcohol Syndrome. What does their future hold? Where will I lean the ladder when I need to sneak in to their rooms and rock them? Who will rock them when I no longer can?

If you liked this post, you might also like one entitled, "Don't Blink."

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!