Just one Facet of the Team

Image by: Popofatticus

In my last post, “Parents, You are the Lead Teacher!”, we spoke a bit about the IEP team, and that the teachers and school staff are really the “support personnel” for parents, and that the whole educational process works much better when parents take this leadership role. I have a personal story for you of another way that we are the support personnel for a family.

This past week I was reminded of the power of a team. I have a student and a parent who are really in a rough place right now. We’ll call her Liz for purposes of dignity and confidentiality.

Liz who is 17 has a condition that has caused her to have severe visual impairment, as well as significant cognitive disabilities. She is mostly non verbal, though she has a few words that are quite colorful that she says with just the most perfect inflection. She walks very well, and this is definitely her preferred activity.

The trouble is, Liz does not like changing activities. Once she’s involved in something, she’s fine, but moving to a different activity causes SEVERE distress for her and is nearly guaranteed to result in her slamming her head against the ground, biting herself, screaming, kicking, and an all around complete disruption of her mood. She could not convey it more clearly that she doesn’t want to change activities. Unfortunately, the world is full of change, which is where the trouble comes in.

Because of these tantrums when changing activities, you can imagine that Liz has some major problems getting onto the school bus, and getting off of the school bus. She has problems going into her house, and then leaving her house. She has tantrums when coming back into the classroom. What this translates to is a single mom who once she wrestles Liz off the bus in the afternoon does not leave home until the next day because of the problems this causes for Liz. Let me be clear, she’s afraid to leave her home with Liz because she’s concerned that someone will call the police thinking that she, the mom, is abusing Liz. No restaurants, no movie nights, no friends over. She lives with her sister, who has a young son with autism, and they support each other. Thank goodness for that.

It is really a very difficult situation, and one that the school has been working for years to correct for Liz. So, I bet you are thinking, “Wow, some team, this kid doesn’t seem to be getting anywhere!” Unfortunately, in many ways, that is true. The power of this team is in the fact that it was a balm for Mom’s soul to be able to have a group of people that are essentially extended family for Liz, all around the table at her IEP, truly sharing the burden with Mom. We were there for Mom, we wanted to do whatever we could, and a lot of what we could do was just listen. Its unbelievable what this mom deals with every day. At the school, there is plenty of support to help Liz through these transitions and to keep her and us safe during these severe tantrums. But at home, there is often only mom, and Liz and Mom are the same size.

We developed goals and strategies for Liz over this next year, and with some luck, maybe we can be successful with our goals. I do know that last week, we were successful in helping Mom make it through another day, in a situation that many would consider Hell. When we asked her if we needed to explore other options for a home for Liz, I quote mom:

“Hell no! Would you give up your child to let someone else raise?”

You know, I don’t know. I listened to her talk, and I couldn’t imagine being in her place. I have an 8 month old little boy, and all I could think about was how ridiculous I felt for wishing he would take a nap the other day so I could get some work done, and here is this lady, dealing with this situation EVERY DAY, for nearly 17 years, and what am I dealing with? A happy 8 month old that just wants to play with Daddy. Some real perspective, and a question that is so intensely personal, with no real “right” answer. There is only “right” for her and her family, and one of our jobs as her team is to support that to the fullest extent possible, while of course, making sure Liz’s best interests and that of her family are met. That is the power of a team.

If you have a story, please, share it with us in the comments. I want to hear it, and it sometimes helps to have someone listen. If you have any successes with helping a kid like Liz deal with these transitions so we can get her more “can-ning” I’d love to hear that too!!