We ate cake tonight, baked and decorated by our daughter for her big brother. We were celebrating Lil D’s fifth graduation with cake and biryani, and although he had eaten his meal half an hour before and had since retreated upstairs, it was still a celebration. I served the cake to the family on a familiar square yellow platter, decorated with red and blue large dots and covered with Arabic and English writing
Bismillah-ir-Rahman-ir-Rahim — In the Name of God, Most Gracious, Most Compassionate. Underneath that was written Lil D’s birth information: the hospital where he was born, his height and length, his time of birth and his name. My eldest brother made that platter for his nephew when he was born, nearly 12 years ago.
Lil D – my first child. First grandchild for my parents. The son of their only son for my in-laws. I looked at that platter and was overwhelmed with the memory of expectations. What would he be when he grew up, we wondered? Would he be naughty as a child, like his father was? Would he have a love of books like his mother? Like any parents, we had great and wonderful expectations centered on a happy, healthy, engaged, smart child growing up to be a good person and a good Muslim, a success in whatever field he chose to pursue. We didn’t expect autism.
I don’t know of any parent who hasn’t harbored some expectations for their child, be it specific career goals or general thoughts on well-being. As we moved through the years with Lil D and his autism, our expectations retreated, grew, subsided, leapt forward and crawled backwards. We learned not to set lofty expectations (other than peace and happiness), but rather to focus on necessary, attainable goals – dressing, bathing, toileting, eating at the table, laundry, shopping.
But as this year wound down, I added a seemingly tricky expectation/goal to my list for Lil D – that he should walk across the stage for his fifth grade graduation. It morphed from something I would speak of with a longing in my voice to something I discussed with more and more determination in the multitude of meetings we had with his school team these past several months, meetings in which we discussed his middle school transition, how to handle his self-injurious behaviors, and ultimately what was best for him.
To see him walk on stage in a gymnasium full of students and parents, and accept his medal from his principal – it became something I couldn’t let go. We had let so many things go with Lil D these past several months, and so many things that he had accomplished in a public school were slipping away – this was something I needed him to do.
Then last week, at Lil D’s final elementary school IEP (Individualized Education Plan) meeting, after we had signed off on his future for next year, his teacher turned to me and gently said, “Mrs. Ali, about graduation …” She didn’t think he could manage entering the gymnasium full of people and walk across the stage, given his completely unpredictable behaviors and bouts of flopping, meltdowns, and SiBs.
My face dropped. Being the compassionate, loving teacher that she is, she and my husband quickly devised a tentative plan for him to escort Lil D to the stage, IF Lil D willingly walked from his classroom to the gymnasium, and then into the gymnasium. It was a big if, given the current situation we were living with.
On the car ride home from that meeting, my husband I argued about graduation. Suffice to say we knew that for me, this graduation had grown bigger than it should, that it had become a selfish thing I needed Lil D to do, and that I was losing perspective on the matter.
Yes, sometimes I am selfish. Nearly everything I want for Lil D, everything I force him to learn and teach him to do is for his benefit. If he accomplishes something, then his success is my success. His happiness makes my happiness. But, this graduation, well it was for me. As I wrote in my post a few months back about the attempting to include Lil D in a winter concert, seeing him onstage was my need to see him partake in one of those rites of passage that “normal” kids have.
When the Heart Breaks
Sunday night, I did what most people in this socially-networked world do – I made a request via Facebook for people to pray or send good vibes for the thing I was praying hard for. I admitted I was being selfish in what I wanted. One friend comforted me and commented, “It’s ok to pray selfishly – it’s the one place where we can be unapologetically selfish. Allah gets us.
And so that’s what I did – I prayed selfishly for Allah to give Lil D the peace and wherewithal to walk up to the stage and accept his graduation medal. Because I needed this.
At the start of the day I drove Lil D to school in an eerie calm. It was yet another tough morning filled with random crying and flopping. In the car I said to my son, “If you can do this for me today, I will be so happy and grateful. If you cannot, that’s ok too. No matter what, I love you, and I’m proud of you. Today’s your graduation day!” But as I walked him to his classroom, I pretty much knew it wasn’t going to happen.
I joined the graduation/awards ceremony, sitting in the back, waiting for my husband to join me. I saw the other four boys from Lil D’s autism class sitting with their classmates. My boy is the most severely autistic of his group, the only one who spends his entire day in the autism classroom while his higher-functioning classmates partially join other fifth grade classes.
After the awards were administered and songs were sung, the time came for the students to receive their graduation medal. Lil D’s teacher was invited to the stage to speak first. She spoke of her five graduating students and praised the school and the fifth graders for their inclusionary efforts. She advised them to continue including students with disabilities as they transitioned to middle school.
Then she spoke of a special boy, the only one who was fully hers in the autism classroom, and how she didn’t know if he would be able to join her on stage, but that they would try. She called Lil D’s name.
Pause with me a moment now. Let the music swell and then fade away to silence. Let the blessed agony and anticipation build. Watch the colors grow mute, until all you see is him holding the arm of his father, entering a gym filled with more than 300 people. They pass me on their walk up to the stage, and he is calm, confident, smiling. They walk up the stairs to the principal, and he ducks his head for her to place the medal around his neck.
He does not take the medal off or push it away, as he has often done in the past. He wears it, accepts a hug from his principal and teacher, and then walks down the stairs with his father. The students cheer and clap. They know how big this moment is. They have stuck by him for five years, saying “Hi” to him in the halls, being his buddy in music and gym class, eating lunch with him in his classroom and accepting him even when he screams and cries and lashes out. He belongs to them.
They pass me, and I walk over and kiss his cheek. “Thank you Lil D,” I whisper through my tears. “I am so proud of you.”
Pause, just pause and savor this with me. This is the moment when the world stops, and you can’t breathe, and you are so happy that your heart breaks with joy. And you go from saying, “Please, please, please,” to “Thank you, thank you, thank you.”
You know that feeling when you want something so bad, and you pray for it so hard, and you are just about sure that your prayer is not going to be fulfilled, but still you hope against hope and continue to pray and beseech God to do this one thing for you?
And then your prayer is answered.