Sunday, November 8, 2009

When Did You Know?

Often times, people will ask me, "When did you know that Sean had autism?" I have been thinking about that a lot lately. When did it truly sink in, down to the bone; when it could not be ignored any longer. I thought it best to look through writings and journals that I had kept, in order to answer the question as honestly as I can.

From all accounts, he was perfect. His skin was the color of gleaming ivory contrasting against his bursting red hair. His blue eyes were surrounded by long, thick reddish-blond eyelashes, like petals on a flower. People stopped me all the time when I took him to the grocery store or the post office, “Look at his hair. He’s gorgeous.“ Yes he was. My little angel. He was simply a beautiful baby, my pride and joy.

So I guess if you ask me honestly, when I realized something was amiss, I would have to say I don’t know exactly. There was not one clear moment. It happened over time, like lint collecting in a dryer, little moments accumulating over time to produce something bigger, something too hard to ignore.

I kept a journal for Sean. I had imagined that it would be filled with all these wonderful stories of him as a baby, then as a boy and finally a young man. It would be a gift I would give him when he left for college or the night before his wedding or the birth of his first child. I imagined the surprise in his eyes, the smile spreading across his face as I handed it to him.

These are things I took for granted. I made assumptions never realizing that life didn’t always unfold the way I had imagined. I wrote in it until it was just to difficult to write any more.

There are sweet moments like November 8, 2001 when Sean was nine months old-- “Sean you are officially walking."

In August 2002 it says, “we are having such a great summer, spending lots of time @ the swimming pool…I took you for your first haircut yesterday. You were such a good sport!”

On March 27, 2003, two months past his second birthday I wrote, “You are currently in the 20% for weight and height. You are a feisty little rascal.” I glued a picture of him underneath the entry. He is wearing a sea foam green sleeper, his cheeks apple red, and he is smiling, his eyes holding onto laughter.

By the next month in April of 2003 he started to talk. He said, “bye-bye”, “yellow”, “Mommy” “Da-dee” “dog” and “Papa”. But in the same entry I wrote “You were kicked out of Mom’s Day Out for climbing, pushing and hitting other kids. Oh, I so hope this is a stage! When you are angry you bang your head on the floor.”

There it was. I was beginning to lose him. Even in my writing I can sense my own worry and I hear the panic in my voice. It was the first entry where I had begun fearing what was to come. I was beginning to brace myself for what lie ahead.

Still, I wanted to believe what everyone told me.

“He’s a boy. They talk later.” or “He’s your second. His older brother talks for him” and, “You’re spoiling him -- he needs more discipline. A good hard swat.”

But all I can remember is thinking, “Tell Mommy what is wrong and I can fix it“. How could I fix something that I didn’t even understand?

The last entry before the final entry was in July of 2005 when Sean would have been 4 years old. Simply put I wrote, “You are lots of work. You have a very quick temper and you get very upset at least twice a day.”

That time period is blurry. I stopped writing in his journal. It became too hard. There are no entries for two years. The final entry was intended to be the last -- a couple of paragraphs trying to wrap it all up, the squashed bow on top of the crushed box.

On August 22, 2008 I start with, “Wow, 2 years slipped by and I’ve been afraid to write in your journal -- I am sorry for that. My heart is heavy with worry and sadness. My precious little guy -- what I had imagined for you years before did not really pan out. Since moving to Portland, Oregon (not too long after) we were told by a doctor that you have Autism (it was a fear hidden far in the caves of my mind). We’ve watched you struggle and fight. We haven't always done right by you. We didn't understand…Oh Sean, I wish I could make you all better, make the world an easier place for you to live in.”

The page in my journal is riddled with spots, dried salty teardrops that fell from my chin and free-fell onto the paper. It is a painful reminder of how much sadness a person can hold.

Although I can't say is has been smooth sailing ever since, I can say, honestly, it has gotten better. As a family of four people there are rules we follow -- stay in the present and try our best to be kind and understanding to each other, even during the toughest moments.

So today, Sean ran past me quickly, his soccer cleats leaving pine needles and grass on the floor, his body tumbling forward in delight and his smile, like a life saver, keeping me afloat. It doesn't really matter when I knew for certain ; it only matters that we take each day like a gift and make the most of it. Life is really precious and so is Sean.


SueMayer-SpecialNeedsMom said...

Katie, I can tell this entry was written from your heart. Just like you we have learned to live life one day at a time and to always count our blessings, even when they are sometimes hard to find. Enjoy the journey, it may not be the one you imagined, it may have twists and turns you never anticipated but it is an adventure all the same and along the way you will find both joy and challenges that will make you into the person God knew you could be. May God continue to bless you and your family.

Corrie Howe said...

Beautiful. Thank you for sharing your experience and your thoughts.

Cinda said...

This is very beautiful. When Linea and I present people ask (every single time!), "When did you see the first signs?" I think that sometimes people desperately want to know so they can prevent their own child from any harm. Throw out secret spells or say special prayers or something. You are so right. Does it really matter? Would it have made any difference if we discovered something a week or a month or even a year earlier? I also value your honesty in addressing the grief that comes with letting go of the dreams we make for our chldren long before they start building their own. Life is different than what we had imagined but richer in so many ways. Sean is so precious.

Gimky said...
This comment has been removed by the author.
Gimky said...

Your letter to Sean on Aug 22 really moved me. It speaks volumes to your hopes for the future, however precarious it may seem at times. As difficult as the ups and downs can sometimes be, you’re writing to your son, when he is older, with the hope that he will one day understand these nuances. That is the most challenging part of this journey, I find. Keeping one foot in reality, while simultaneously allowing oneself to hope. Thank you, Katie, for sharing.

Meghana said...

Hi Mrs. Bevins,

This is Meghana, Sean's buddy from Soccerplex. I have read this blog a couple of times since you introduced me to it. I am very impressed with this website, and think its an excellent way to reach out to others about autism. I miss Sean, and think about him often, especially after reading this blog. I would have never imagined that he had autism; especially through is kind and polite manner at Soccerplex. He was a very good soccer player, and I thoroughly enjoyed spending time with him. I hope to see him soon :)


Katie Donohue Bevins said...

Meghana, Thanks so much for your kind words about Sean. He always asks about you and maybe when soccer continues in the winter he'll get to see you again. Thanks for taking time out of your busy life to be with Sean and the other children. He loved running with you! What you do makes a huge difference to these children. Best, Katie

Judy O'Barr said...

Katie, I just read back to the September and October entries, when I met Sean. Oh my gosh! You are an absolutely beautiful writer! I am sitting here crying as I read this. There is not enough time or space for me to say what I think about Sean and your family so I will just try to give you encouragement to continue writing. It really is so beautifully illustrative. Be proud of yourself and Sean. He is such a joy!!!!

Katie Donohue Bevins said...

Ms. J - I can't tell you how grateful we are to have you in Sean's life. He has been lucky to have really good teachers and it has made an incredible difference in his life. Thank you for teaching him and believing in him. Best, Katie