Finding A Balance

As I was rolling out the pie dough last evening, a voice of a sibling of an adult with autism was being interviewed. The thirty year old man talked about how his childhood revolved around his non-verbal brother and how the family life was decided on one factor, his brother. Whether the family went on a trip or went to the store was all based on the brother and as I listened the words spoken faded away and all I heard was anger.

Anger over not having a typical childhood, anger over not getting attention, and anger now about soon having to care for his brother. My husband, Peter (who was also listening to the radio interview) chimed in and said "that was interesting, don't you think?" Still rolling the pie dough, I stopped, and said, "No, i think it was sad."

Sad because I could feel the negative energy flowing through the radio; I almost turned off the radio in the middle of the interview. As I listened more, I reminded myself of all the families I have met and how hard they are working to balance family life.

We have come so far in creating a family life that supports all members, however the interview made clear how important it is to not make autism the center of the family. Sometimes that may mean deciding not do a therapy or an autism event, so that the whole family can thrive not just one member.

In thirty years I want my children to reflect back and remember the camping trips we took, the special movie nights, or the hikes in the forest, not us running around to this occupational therapy or that speech therapy appointment.

Effective Agenda for IEP meetings

Meeting agendas are a useful tool for any meeting and it surprise me every time I hear that they are not being used or not being used properly for IEP or team meetings. In the Build Your Family workshop I teach how to set-up a productive meeting and the first step is the meeting agenda.

Agenda ideas can either be gathered at the last meeting you had or through email. Since this would be your first agenda, email all the team members for agenda ideas. A simply, friendly email like:

Hi everyone,

I would like to make sure we cover all the areas we need to address at our next meeting, so I am going to make-up a agenda to follow. I know you all have so much on your schedules, so the agenda building can be my job. Please send me all your suggestions by (insert a date).

Thanks again for all your help,

Now, it is time to organize an agenda that you can use each month:

IEP meeting for ________________
May 19, 2009
Room#12, Elementary School

• We work hard to start the meeting on time, people come as soon as they can & they will inform the group if they need to leave early at the beginning of the meeting
• We allow people to finish speaking
• We are respectful of one another in discussions of children, adolescents & adults with ASD, their families, & the professionals, programs & agencies that work with them
• We actively solicit diverse ways of looking at things
• We use person first language (e.g., child with autism versus, autistic child)
• We recognize when more information is needed before a discussion can proceed
• We clarify actions that need to be taken, by whom and when
• We collaboratively determine agenda items for a meeting and important topics that should be discussed as a group
• We revisit our norms periodically and make changes as needed**

10:00-10:10 am — Angela will greet everyone and give updates about Tristan.

10:10-10:40 am — Review goals for IEP and make any changes.

10:40-11:00 — A discussion about need for an outside specialist to come work with Tristan and the team on reading.

**These norms are taken from the Vermont Autism Taskforce agenda.

Help Us Build a Better Program

I have been hearing a lot of frustration and pain out there over school related issues. Some of the stories told to me by parents have sucked the energy right out of the parents leaving a shell; not a great place to parent from. It seems to us at Parenting Autism, school related issues tend to be a huge obstacle to getting on with your life; they drain time, energy, and resources.

So, how can you move forward when all the players (the school) are not willing to help get there. The portion of our Build Your Family workshop that focuses on developing an Inclusive Team of Professionals has been so popular we are expanding it. So, we need your help to make it better, please take two minutes (really that is it) and fill-out this survey

Pass this link on to your friends, co-workers, neighbors, and family who have children on an IEP (the child does not have to be diagnosed with autism). The more data we collect the more information we have to help shape a new program for parents and educators.