Now that we learned our precious girl had Autism, what was going to change? What was this information going to do for us as she was entering adulthood and transitioning into a woman? Would there be more help for us? Would someone miraculously tell us that this treatment or that medication works perfectly for people with Autism? Would some book or website have all the answers for us now that we had a name for her disability? Would the lights suddenly turn on and the streets all of a sudden be marked? No, not really, but I do believe as parents of children with special needs we have a need to know. We have a deep desire for answers because we desperately want to know why? Why did this happen and why is our child so different? At least, for me, knowing that there was a name for her social anxiety, obsessive-compulsiveness, oppositional defiance and communication difficulty helped me better understand the woman she was becoming.

We survived those early years without calling it Autism; when seizures, medications, wild behaviors and special diets consumed our lives. We survived the transition, the middle and the knowing without Autism as well. But now, I could ‘see’ the Autism as I watched her grow into a woman. A woman with one dream and one desire. Simply, to be happy. Simply to do the things she loves with the people that she’s comfortable with and the people that she calls friends. That’s all. It’s the most basic of needs.  We all desire to belong, to have friends, to laugh with others and to share with people who accept us. All throughout her schooling, we talked about ‘inclusion’ and the amount of time she spent with her ‘typical’ peers throughout the day. The school teams even had to document it down to the minute. But, now as a woman, the amount of time she spends with typical 20-something year olds is diminishing and that’s OK. What I’ve also learned is that she’s the most comfortable with others like herself. But, that doesn’t mean she’s not quietly yearning to be with the rest of us in our ‘normal’ world. That’s what Autism is.

I don’t know the exact moment she became a woman. In my eyes, she had always been a child. A child I had to take care of each and every day. A child that needed me and only me because no one else knew her like I did. But, the truth was, she was no longer that child and she knew it. Her knowing was the biggest obstacle in our sometimes strenuous relationship. Maybe it all started for her in high school during her senior year. Despite the fact that she was almost 20, we were planning for her high school graduation and all the pomp and ceremony that goes along with it.  She joined her classroom peers as a group of them prepared for prom. The very handsome young man that was her date was my friend’s son, J, who also had Autism (Fragile X). His mother and I worked together to plan out the evening for both of them. We knew it wasn’t going to be easy but it seemed like the right thing to do. So,  I found the dress, scheduled the hair and nail appointments and had a young neighbor girl come over to do her makeup. She couldn’t help but smile the entire day; I’m sure she was feeling special and beautiful. But, I, on the other hand, struggled with all of it.

I struggled because I didn’t think I could go through with it and I admit that I was bitter. Bitter because this was going to be another opportunity for the world to remind me just how different she was from everyone else. And then, it hit me.  I ran upstairs to my bedroom and shut the door so no one would see me. I fell to my knees in my closet, so no one could hear me, and I cried. Boy walked in and found me. I sobbed and told him that I didn’t think I could do it. He put his arms around me and told me that I had to do it….for her. Even if it was hard, it was her day. I had to put my trust in the fact that she deserved this experience and that she needed it and wanted it. He grounded me and reminded me of my purpose and I took one giant deep breath and put a smile on my face.  I went straight into autopilot.  I sat with her at the salon holding back tears as I watched all the ‘other’ senior girls primping and priming for their big night. I continued smiling as we put on her elegant purple dress and I resentfully beamed as everyone “oohed and aahed” at how pretty she was. I maintained my grin as the rest of her group came to the house to take those ritualistic prom pictures. The chaperones that we hired to “watch over them” arrived and my friend and I put them in the car and we waved goodbye. I can still see her face beaming from ear to ear as she rocked and smiled in the back seat of their car. I think that was the moment I first saw her as a woman. That was the moment that I felt such immense joy and incredible sorrow all at the same time. It’s just so hard to explain.

I see you smile and beam with pride. 

I mask my tears and run to hide.

Who is this woman I see today?

That child of mine has gone away. 

And, then, I think of how you’re not; 

Those thoughts they leave me so distraught.

Because I know your life won’t be; 

The same as mine has been for me. 

I’m trying hard to just accept;

Your life won’t be what I expect.

And all I hope for you today;

Is for that smile to always stay.

She ended up having a wonderful time despite my bitterness and I realized the only thing that mattered was HER happiness. I had never seen such joy in her as I had during those few weeks between prom and graduation. Again, I realized how lucky we were to have had so many wonderful teachers, friends and people in our lives who came out to celebrate HER. She was beyond ecstatic during her graduation party as she opened the door for each and every guest that arrived. She greeted them with the biggest smile I had ever seen. And it was contagious. I had never smiled and laughed so much in my life as I had on that special day. I guess I never realized that so many people loved my little girl.

Ms. Boeding, her teacher and another one of our miracle workers, had told me how important her senior year would be and she was right. I had her to thank for encouraging us to stay that year so we could be a part of it all. I don’t think we’ve had anything as joyous since……….it was truly life-changing for the both of us, but mostly me. “Enjoy the little things in life because one day you’ll look back and realize they were the big things.” (Kurt Vonnegut). I wanted to give her that same joy each and every day but I wasn’t the one that had performed that miracle.  It was actually the people in her ‘normal’ world that provided her that perfect day. It was actually the people that I had envied just a few weeks before and I had them to thank. I just hope that she’ll find such joy again in her life……someday. And, I hope the people in her ‘normal’ world will be there for it.