When the student is ready, the teacher will appear. Buddhist Proverb
When Teddy was 3½, before he was diagnosed with Aspergers, our Nurse Practitioner referred him to an Occupational Therapist.
I had no idea what an Occupational Therapist was. It seemed a rather odd person for a three-year old to see. Like maybe you went to one if you needed career counseling. After two years of twice a week visits, I knew exactly what an OT was.
Together Teddy and Susie accomplished a great deal. He established hand dominance, learned to cross midline and improved his ability to motor plan. Susie also helped me understand better some of Teddy’s frustrations. And it was during these visits, sitting in the waiting room, I came to know one of the most significant women of my early journey in the world of disabilities.
17 year later, as I vividly recall Joanie, I smile and my heart warms.
Joanie’s son John’s appointment was right before Teddy’s and as we were the only two in the waiting room, we began talking. Soon, after John was done, Joanie would stay through Teddy’s appointment. And soon, Teddy and I came early so Joanie and I could talk through the entirety of John’s appointment. One and a half hours, two times a week, we talked.
It was our therapy.
Joanie was the first and only mom I knew who had a child with a disability.
Although we lived in university family housing, surrounded by children, I knew no one dealing with similar issues.
And although Joanie’s challenges were different, John had Down Syndrome, she faced the same challenges.
We understood each other like no one else understood us.
I don’t think a mother ever forgets the first mother they meet who understands. Who you don’t have to explain to, who you aren’t embarrassed around, who has the same fears you have.
In addition to having special needs sons, when we met we were both pregnant and delivered our daughters just two weeks apart. Among our many discussions was the topic of introducing a baby to our families and the new challenges this would bring.
But of all our talks, the one I remember most was of the day we compared and contrasted our sons – one with Autism and one with Down Syndrome.
Before I go on, it is imperative I say the conversation I am about to describe was one of the most open, honest, and egoless conversations I have experienced in my life. It was two mothers, two women, understanding one another’s differences and through our differences we came to see our commonalities.
By the time this conversation happened it was the summer of 1996, more than a year after we met, our daughters were approaching their first birthdays and Teddy had been diagnosed with Aspergers.
I spoke first of my experience with Teddy. I spoke of the judgments he received, mostly from other mothers, because they did not understand him. He looked perfectly normal but his behavior was anything but, he did not meet their expectations and because of this he was ostracized. I hated the condemnation, I told Joanie, yet at the same time I understood the cause of it and I hated that too. I so much wanted them to know Teddy and see the smart, creative boy under the violent external behaviors. I wanted them to understand how conflicted, how confused my little boy was and how he needed understanding and that didn’t happen, and we became an island, in the sea of kids and mothers that was university family housing.
Then Joanie spoke.
And she too talked of judgments, but of a very different kind. She spoke of how, when some mothers saw John, they saw the obviousness of his disability and because of this obviousness, he was either avoided, or if they were near, they were uneasy to have their children around him. They had low expectations of John. He had Down’s, and thus he was mentally retarded and capable of very little. That was the thought process she continually encountered. They didn’t give him a chance. Seldom was he given the opportunity to achieve anything more than the lowest of expectations. How will he ever have the chance to be more if he is automatically, after just one look, treated as incapable? People would rather just ignore him, treat him as if he is not there, assume he has nothing to give and is not worthy of any effort. He has so much to give. He is so sweet and so much wants the attention of others. It hurts that he doesn’t get to experience friendship. It is just the three of us most of the time.
And my island suddenly formed a bridge to Joanie. I felt pure love for another human and I saw how we all have struggles.
Struggles come in different shapes and different sizes and struggles are completely unavoidable. We can’t wish struggles from our life. We can’t pray struggles away. No. Struggles are like death and taxes and change, they are a certainty. And because we all have struggles, it is energy wasted to judge or compare our struggles. There’s no place, no purpose for that. Struggles just are, and for what ever reason the ones we get are the ones we get. We can’t answer why, so why compare. Why strengthen the power of struggle by using it as a means of comparison.
Instead, as I listened to Joanie’s variation on her special needs struggle, I saw clearly how hers were hers, and mine were mine, and how there was a beauty not in the lack of struggles, but that we were there for each other because of the struggles.
We were sisters, introduced by struggle, and joined by acceptance.
So I don’t compare. I was given what I was given for reasons completely beyond my ability to comprehend. Instead I choose to try to use my energy to embrace the many lessons learned on this special needs journey Teddy has led me on. And what an education it has been. You could say it is the education of my lifetime.
You can not travel the path until you become the path. Buddhist Proverb