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Well, after my Support Group’s Monday web-meeting, the decision was made to suspend monthly parent meetings as a result of some rather obvious difficulties.

Our December meeting was to be an opportunity for parents to meet representatives of service providers and area organizations, so they could put a name and face with the organization, obtain contact information and ask questions about services. It was supposed to be a very casual meeting.

I ran the idea by 18 provider agencies and organizations. The overwhelming response was that it made great sense and would be beneficial for them (outreach for the agencies) and even if parents didn’t attend in large numbers, they could get to know my group, see what we have to offer and perhaps coordinate. All 18 providers have been receiving our monthly flyers for 3 months now, all of them state that our meetings occur on the second Saturday of each month.

Last week I emailed all the agencies and only received one response. This week I followed up with phone calls and was met with a resounding round of reasons why providers couldn’t participate… 1) can’t afford to pay a staff person to attend on a weekend, 2) can’t afford to offer ‘comp’ or ‘flex’ time for staff who would attend, 3) it’s a weekend can’t you schedule a weekday?, 4) attending Christmas parties.

I discussed the situation we have encountered with one provider who told me he was stunned that providers weren’t willing to come, that not one staff person would ‘volunteer’ to attend for the opportunity to do outreach for the agency and support parents. We talked about possible ways we could coordinate in the future.

We realized we had to cancel the December meeting. We also discussed that parent turn out has been less than encouraging and that we didn’t have enough parents willing to help with the group and make a commitment to the group. We also discussed the fee the church is going to start charging in January for use of the room and how we can’t afford to pay the fee, especially if we don’t have parent turn out and Winter weather would likely impact turn out.

The decision was made to temporarily suspend monthly parent meetings, until Spring 2013.

Recently, the ‘co-facilitator’ told me she felt there was too much work for two people and hadn’t realized how much work there really was. She thought with all the folks who attended the organizational meeting, there would be a group of people taking on the responsibilities of running the group. She explained to me that she had family issues and didn’t have the time or energy to put into the group now.

She hadn’t communicated with me in weeks, hadn’t participated on the Facebook group in weeks and was explaining to me that she couldn’t continue at the pace she’d started out working on the group. I asked her if she wanted to reduce her role and she said she already had been absent for most of a month and didn’t know when she’d be able to put more time into the group.

I asked that she provide me with the member profile sheets she’d been trusted with for the purpose of creating a data base (which never materialized) and if she’d return the business cards I’d provided to her.

She responded that she would. I held the web-meeting as scheduled, she didn’t attend that. After the web-meeting I decided if she wasn’t going to be able to commit to the group I would ‘un-share’ my drop box folder with her, as it was shared only because she was participating as a managing member. If she had come back later and told me she was able to be involved again, I’d have ‘re-shared’ that folder with her.

Today I posted the following to the group:

FYI: This Saturday’s meeting will be your last opportunity to access our resource materials. I’m suspending monthly meetings starting in December. Providers who were previously enthusiastic about attending a ‘Networking Night’ now tell me a Saturday night in December is not ‘do-able’ and in light of the church beginning to charge us a fee in January for use of the Parish Hall and having less than a half dozen parents in attendance at previous meetings, having no support staff to share responsibilities and management of the group, I can’t justify continuing monthly meetings at this time. I am heartbroken, I hope to be able to resume meetings in Spring 2013.

She deleted herself from the Facebook group today. Tonight, she sent me a series of ugly emails.

In those emails she said she never said she couldn’t be part of the group just that she couldn’t participate as much as she had been, she said she’d told me she wanted to continue to be part of the group and I’d responded “I want to think about it.”, but in reality I’d told her I could print our agendas for this meeting, she’d said she could print them and find a way to get them to me, I’d responded “I want to think about it.” She said that I’d “dismissed” her from the group.

She went on to say …

On Saturday I had a teacher contact me to ask me why my name wasn’t on November’s flyer. I was a little caught off guard and the last thing I wanted to do was allude to the idea that there was a problem, so I told her I just wasn’t able to attend that night. She did tell me that they were being required to print out the flyers now and shared with me that many of the teachers wouldn’t bother to distribute them because of this.

This person’s name was NEVER on any flyers. The sponsor told me my name as the facilitator and their contact person and organization’s information needed to be on the flyers. This was a blatant lie! Why would she do this?

She told me she thought my problems with previous people who wanted to help was the way I interpreted their helping.

She went on…

I did remove myself from the group after reading your last post. I thought it was insulting to providers, parents, and anyone who was willing to help. It had a very negative tone and came off as an attack on the people you would want to participate in and support the group.

What exactly am I to do? My sponsor tells me to post the issues I’m having with the group on the Facebook group, let others know what is going on and see if they have suggestions, etc. I feel that letting them know, honestly, what the issues are is a matter of respect. If I’m making a change to the way the group will function, they have a right to know what we’ve encountered that’s caused us to make the change.

The gentleman who’d talked with me about providers not attending had wished me luck getting parents to attend. He said they don’t attend Individualized Service Plan meetings or Transition meetings and I know from previous professional experience that many don’t attend their children’s Individualized Education Plan meetings.

During the web-meeting, it was discussed that we should change our strategy. We couldn’t find a free location to meet so we have a fee looming; we can’t get parents to attend the meetings; we can’t get providers to participate on weekends but parents tell us weekday evenings don’t work for them. We’re considering not holding monthly meetings in the future, but taking our resources to places where parents might be, allowing school districts to ‘host’ us, as several had offered to do, so we wouldn’t need a ‘home’ to hold meetings at, wouldn’t have to incur the cost of refreshments or do the advertising. I would maintain the Facebook group and our website.

The gentleman I talked about earlier told me this was a great solution. He said he would be willing to get nearly 20 of his support personnel together for us to do a presentation to.

I don’t understand why people say they want to be involved but can’t make a commitment and stand behind it. Really, at this point, only a 5 hour a month commitment is being asked of other parents in sharing group responsibilities and that amount of time includes attending the monthly meeting. What exactly is so time consuming? I’m handling all the outreach, contacting, advertising, planning, for the group, I just wanted someone to help make decisions so I’m getting more points of view, I need someone to help me set up and tear down our meetings because I can’t do that from my wheelchair.

This is supposed to be about helping and supporting parents of children with special needs. It’s about doing something for others. Why is it so hard?

This whole experience really has been terribly disheartening.