During the summer of 2006 or 2007, while at a carnival, I sat with a psychic who told me a great many things that was, for the most part, pretty accurate. Despite not having my children in tow with me that particular evening, he somehow knew I had twins and that they were not identical. One of the things he said was that one of my children, my son in particular, would be a “teacher of great patience.” I chuckled one of those “how did he know” chuckles, at the notion. It was an interesting and peculiar thing to hear, but it stuck in my head.
The more I thought about those words, the more alive they became. And through the years, they have taken on a richer meaning. My son has certainly taught me how to be patient, and he is still teaching me.
My first lesson from my Teacher of Great Patience occurred during those early NICU days. We desperately waited for him to breathe without the use of the C-PAP machine. We longed for his lung and the stitches from the chest tube to heal. With bated breath, we had to wait for his brain, lungs and heart to synchronize so he could stop having apenic and bradycardic episodes (his brain would forget to send the signal to his heart and lungs to beat and to breathe). It would take weeks before I could hold him; or that he would be able to suckle from a bottle and not be fed through a tube down his throat; or come home.
Eventually, he would come home and continue to teach us how to be patient. In his own time, he would learn how to speak as we would patiently try to help him communicate with the outside world. We have had to learn to be patient as his body continually recovers from frequent infections, viruses, syndromes and diseases.
My most recent lesson from my Teacher of Great Patience came now at the end of 9th grade. Let’s rewind to the summer between 6th and 7th grade when he was diagnosed with idiopathic, sudden onset sensorineural hearing loss and tinnitus. He had a very difficult time adjusting to the tinnitus. We acquired a 504 plan from his school. “504 plans are covered by Section 504 of the Rehabilitation Act. Under this civil rights law, students have the right to a free appropriate public education (FAPE). And that’s the whole point of 504 plans: to give students access to the same education their peers are getting. (FAPE is also guaranteed under the special education law IDEA.)”
Federally protected accommodations were set in place to ensure that he would be able to access the curriculum throughout the year; and ensure comfortable testing locations that would minimize distractions and triggers of his tinnitus so that he could concentrate on state administered exams. In New York State, high school students must take NYS Regents exams to satisfy the requirements for their high school diploma.
Three days before the first scheduled state exam, my typically docile, easy going, quiet child (now teenager) began a campaign to reject any accommodations for the upcoming state exams. I tried to explain that these accommodations are for his benefit and he should just go with the program. But he was resolute. What began as a discussion as to why his ‘want’ to abandon the accommodations was more important for my ‘need’ to make sure he is given, and takes advantage of every opportunity to help him succeed, escalated to the quintessential mom vs teenager argument. It was “I know what is best for you.” versus the “You’re not listening to me. AARRGGHHH, I am old enough to make my own decisions.” For him to argue and challenge me the way he did, it was very obvious to me that this was very important to him. It was an ugly and painful point in our relationship, but it was necessary and important.
I tossed and turned all night debating whether I should stick to my guns, and keep the accommodations in place, or if I should take a step back and listen to him.
These are tough decisions for any parent to make. Do I let my child spread the wings I have been pruning and preening for the last 15 years? Or do I still pull the “I’m the mom, you’re the child and what I say goes” card?
For parents with children with disabilities, its even harder. At times, being a parent of children with disabilities takes on a hypocritical role. On one hand I hear myself trying to empower and encourage my kids to not set limits for themselves; I encourage them to push themselves, to keep up with their peers; I push them to challenge themselves. If someone says that due to their condition, they should not….I challenge my kids to prove them wrong.
But at the same time, as I am hollering to the world, “my child is no different than yours, my child can keep up with the best of the best”, I am speaking from the other side of my mouth and saying we need accommodations, we need to level the playing field.
I see the hypocrisy, but I cannot avoid it.
Feeling conflicted, I called a good friend who lives in my world. She has 2 children with disabilities and is extremely well versed in dealing with schools and 504 plans. I relate the argument, the hurt feelings, the conflicted feelings and the hypocrisy, and she immediately gets it. She reminds me that we have to let them have a say in their world.
Taking my friend’s advice, I left a message for the school guidance counselor to expect a visit from my son and to please take the time to listen to him. Then I asked her to confer with our amazing advocate, his Teacher for the Hearing Impaired and get her to weigh in on this debate.
My son’s passion and expression of what he is experiencing was very articulate. The mature tone in which he spoke when explaining how his tinnitus affects him was convincing enough that the guidance counselor’s message to me was instructions on how to remove the accommodations and give my son what he was asking – to take his test alongside his peers.
In the end we all agreed that it was important to:
- listen to him;
- spare him the emotional turmoil and resentment he would have experienced if we didn’t give him what he was asking;
- allow him to be treated no differently than his peers;
- let him not set limits because of his hearing loss and tinnitus and let him challenge himself;
- let him fly.
My little man of few words used his voice to defend his decision to take his exams in the general testing location with his peers. He became a man of action. He became a leader, in the sense that we followed his lead.
He did what I have always told him to do. “They” said that he should not test in the general testing locations because of his condition. He set out to prove us all wrong.
He tested and he succeeded. He aced his state exams. He learned to use his voice. But most importantly, he taught me, once again, to be patient with him, to listen to him, to let him grow.