In March 2014 the theme on The Road was stories. In this post, originally shared 3/19, Mardra shared a few of the stories she shared with professional service providers who work with developmentally delayed adults. 

Speaking of Stories…


I’m sharing the mugshot, I mean headshot, because today I had the pleasure of being a professional parent.  

A group of professionals who are part of an organization that provides a variety of services for adults with developmental disabilities: housing, vocational resources, work environment, and day centers. Listened to me regale them with  facets from my own story as well as answers from other parents of adult children. 

They asked me to address “Team meetings.” So I started with this picture…


Marcus at a few months old. Isn’t he cute?!?

By the time Marcus was this age, he was already “in school.” When Marcus was born, those 23 + years ago, Nebraska was one of only 5 states that offered early childhood education for those with special needs all the way from birth.  Pretty awesome! But also, that means that I have been involved with IEPs and “Team Meetings” for over 20 years. My first meeting with a group of professionals and educators I had to advocate for the needs of my son in an intimidating environment that affected every meeting (for me) thereafter – and I wasn’t even old enough to go to the bar after for a drink. And trust me, IEP meetings can make a person want to drink!

Another experience I shared was when Marcus was in a transition program, preparing him with life and employment skills. 

Marcus and I went to lunch before a team meeting; I explained to him we were going to a meeting to talk about where he should get a job after school.  We talked about a few options for his preference. I mentioned one path -we’ll call it plan A – that the program seemed to be steering him towards.  He said, “No.”

“Okay,” I said, “Why not?”

“Horrible,” he said.

Oh. Well, that’s that then.

So, when we sat in the meeting, the folks talked about Marcus and how great he is (of course) and vocational plans came to the table. They mentioned plan A, I turned to Marcus and asked again, “Marcus, what about (Plan A)?”

“Horrible.” he said again.

The looks of surprise that came from the team said everything I suspected – no one had asked Marcus this before.

Marcus is polite and compliant. He wants to be helpful and he wants to make folks happy and keep life smooth. But he has an opinion. and if asked, he will tell you.

So my plea to the folks today was: Be sure you are asking. not only the families, but also the person most affected by these plans.  (Now, to the credit of Marcus’ transition team, there was no attempt to convince him of Plan A. The idea was immediately scrapped and new options were pursued.)

These were two of the stories I asked this team of professionals to consider.  I yammered for about 45 minutes and they were kind enough to nod and laugh at the appropriate parts. I am appreciative that this service center asked me to share if nothing more than to serve as a reminder that parents are people too!

The CEO thanked me for being brave enough to speak in this environment. The fact is – as it always is – personal stories is what changes people’s minds. So – Tell. Your. Story.

If you don’t know where to begin - check out these tips we shared at the 321 conference in March.  And remember,  here at The Road, we’re ready to help you share!