We just arrived home from my daughter’s first college interview. To say I wasn’t sure this moment would ever come would be an understatement. And yet Amanda has been sure of it forever: “When I graduate, I am going to college.”
My daughter has Down syndrome. She also has had to deal with numerous health issues including a tracheostomy to assist with breathing for 12 years, type 1 diabetes, celiac disease and heart surgery. For the longest time we were happy just to “be.”
Not Amanda. She has always had her eye on what was next. And she knows when it is time to move to the next phase, while I still cling to the now.
I remember her first day of kindergarten. We lived in California, and everybody walked to school. Teachers would line up the students according to classroom on the playground. There was a chain-link fence around the playground and parents were not allowed to step through the gate.
Everyone was hugging and taking pictures. Children were crying, clutching their parents and refusing to go through the gate. Not Amanda. She calmly walked in, stood in line and waited. When the bell rang and her line started to move, she did not even look my way. She gave a big wave over her shoulder and disappeared into the school.
Every transition has been this way. I lose sleep all summer long. Will the team of teachers in the new school have reasonable expectations for learning and classroom participation? Will Amanda continue to grow academically and socially? Who will she sit with at lunch? Will she get lost in the always-bigger-than-the-last buildings?
As you can see, I am resistant to change. However, I’ve learned a few lessons that I hope might help me and others as we embark on a new phase. Everyone needs sleep.
• Students need to be motivated to acquire new skills. With some kids there is no “doing it just because the teacher asks you to.” An occupational therapist worked with Amanda for months with a button board, trying to teach her to button small buttons. It was fine-motor-skill hell.
But then the time came when she no longer fit in the snap fly jeans, and the cute jeans she wanted only came with a button fly. I sent her upstairs with a pair and within minutes she came back down with them on and buttoned.
Books assigned to improve vocabulary or reach a higher reading level were darn near impossible to get through. But if she needed to learn her lines from a script, or to read to order off a menu in a restaurant, there was laser focus and endless determination.
Find the motivation and use it to teach the skill. Some students have to want to do it, plain and simple.
• Communicating with teachers and teaching assistants is critical to having a successful year. I needed to hear if a pattern of unproductive behavior was developing to help get Amanda back on track.
If I got a call from a teacher that began “Amanda has been doing this for the past few weeks,” I wanted to reply, “Well, that is your fault.” There was no way I could give suggestions or offer insight if I didn’t know what was going on. No one wants to make a phone call for every little thing, but most teachers and teaching assistants can pick up on a pattern of behavior pretty quickly.
Behavior is a means of communication. If your child is doing something unusual, you need to get to the bottom of it as quickly as possible and act on it—fast. Change takes time, and the longer you wait to act, the longer it will take to see the results.
Monthly team meetings with the teachers who worked with Amanda were critical during the elementary and middle school years. Amanda was not able to relay what happened in school with the amount of detail needed to be helpful. And sometimes she didn’t want me to know. Having monthly team meetings brought cohesiveness to the group.
All the players need to know the expectations academically, socially and behaviorally to have a chance at a successful year.
• And the hardest lesson for me to learn: deciding which battles to pick and who to fight them with me.
The parent/school district dynamic is touchy, to say the least. Parents want the very best for their student. School districts want to give a free and appropriate education. There are many instances where these two views do not match.
Challenges can occur with placement, services delivered, expectations, support within the classroom, and more.
Having a teacher on your side in cases of disagreement works best, in my experience. Not only can teachers cite specific classroom examples, but they have the inside knowledge about how the system works and what buzzwords to use to get their point across. A teacher can never appear to be a parent “in denial” over the fact that her child has special needs. And usually they can keep emotion out of the discussion—which in my case is darn near impossible.
If you need to resolve a disagreement with the school administration, it is important to have “pre-meetings” with other staffers on your student’s team. Those meetings help ensure you all understand what you are asking for and what will be shared. This reinforces the need for constant communication between the team.
Also, and don’t laugh, if you can bring a man to the meetings, it makes a difference. I hate to admit it, but school district administrators are mostly women and they react differently to “the dad” or “the father figure.” It just is that way, much to my dismay.
• Lastly, and most importantly, let your student advocate for herself or himself whenever possible. This skill evolved over time and still has a ways to go. Students need to know they have a voice and can give input into their academic career. As we move out of the safe world of School District Coordinated Services and into college, work, and beyond, Amanda has to know she gets a say in what her life is going to be.
She, of course, will take the lead, moving ever forward with authority and confidence. I, on the other hand, will be bringing up the rear, wringing my hands, with big, dark bags under my eyes. But I am trying!
Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs.