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In a previous blog, “What is a Support Group if not Supportive?“, I shared that I was excited to have a friend, and former client from my time as a professional advocate, involved in my Support Group. I was cautious about this addition to the group, because though she had some good ideas, I knew better than to get too excited too soon because I’d encountered ‘enthusiasm’ before that quickly dwindled. I was right to suspect it might happen again.

This ‘friend’ was a parent, (I’ll call her “Jane”) with whom I worked to secure her son a free and appropriate public education (FAPE) from her school district. We went through meeting after meeting and finally all the way through and beyond a Due Process Hearing. For the better part of two years I helped this woman to try to get her son’s education structured so that his needs were being met.

Even after I left the professional position I held, she called me at home to ask for advice and guidance. Our relationship has spanned 9 years, as she’s called me to ask advice for other people she was trying to help, sharing her experiences with them. She was always quick to suggest legal intervention, though that should be a last resort and I spent a lot of time trying to deter her from giving such advice.

When I began this Support Group, I didn’t immediately recruit her for the group, as she’d just written me to say she was having a lot of family difficulties (which have been ongoing since I met her) and she was leaving the state. I thought asking her to help might create a conflict for her or make her feel bad about leaving when this opportunity was presenting itself.

I had posted about the group and the difficulty I was having getting anyone to commit to helping me on my personal page and she responded that if I had asked her to be part of it, she’d have been here to help me. I then asked her to join, which she did, but when I asked her if she was going to attend the organizational meeting she told me she couldn’t devote any ‘real time’ to it, because she was watching her grandchild.

She offered to put together a list of Human Resources for the county in which she lives, but I have yet to see it. She promised to put together a list of contacts she’d had from when we’d worked on her son’s education situation, but I have yet to see that.

She had come up with what sounded like good ideas for networking, but she was unwilling to even listen long enough for me to explain the focus of the group or my vision for where it might go. Every time I tried to talk to her about it, she rudely interrupted me, changed the subject or tried to tell me what the group should be.

“Jane” TOLD me she was going to ask a business man in her community if he would help with a fundraiser, and told me she was going to write a letter to the editor of her local paper about the Support Group. I asked her not to do that because I wanted to be sure about the law regarding fundraising when a group doesn’t yet have a non-profit status, and that the information going out about the group was consistent. I told her I had a press announcement written, having used a template the Sponsor had provided for me, and I’d email it to her so she could have it put in her newspaper if she’d like to help in that way. I actually had this conversation with her numerous times, trying to dissuade her from writing something herself, seeing as how she still did not fully understand the focus and purpose of the group, refusing to allow me to ever complete a thought when discussing it with her.

We had a discussion earlier in the week about how I wished more parents would get involved on the Facebook group and interact. I had posted after a particularly violent and destructive storm the question, ‘Did everyone get through the storms okay?’ The question was ‘seen’ by 12 people, no one even responded. I’ve asked a number of questions of the 22 people on the group page and gotten very little response.

I’ve shared a number of resources on the group page and there has been little notice of them.

I invited everyone to an event, the organizational meeting, only 1 person responded that they were coming, even though 1/2 of the people on the group page came to the page as a result of receiving the organizational meeting flyer which stated I was looking for motivated parents who wanted to help out. Even the individual who’d originally agreed to share responsibility for the group with me didn’t respond (though seeing some responses might have encouraged others to commit).

A friend of my husband’s and mine (I’ll call her “Cathy”) had joined the group and she contacted me to see if there was anything she could do to help. We talked about the lack of involvement, even though I had posted several times, trying to get folks involved. She offered to post an introduction for herself and ask others why they were drawn to the group.

“Jane” responded, as did I. Later, 1 member of the group responded and the thread died.

“Jane” spoke to me about other groups she was involved with and told me they post about every day things, funny stories about their pets, kids, etc. She told me she would post something to see if she could get people talking. She then posted the following:

“I need more parents to please jump onboard for this support group. They are hard to find in these two areas. Have fun, vent, tell us what crazy things may have happen to you, your child, the family dog. They need to know we want this. A group that is not specific, just help the parents, kids, anyone.”

She had taken it upon herself to make statements that were factually inaccurate and confusing.

I’m not sure what’s meant by “they are hard to find in these two areas”… what is hard to find? Support Groups? and what “two areas” are we talking about? Her county and mine? The Support Group covers the entire North Central Region of our State which includes 12 counties, did she not realize it encompassed more than our two counties? Of course she wouldn’t have, because she never allowed me to share information about the group, she seemed to have made assumptions based on what she thought it should be.

“A group that is not specific, just help the parents, kids, anyone.”??? This Support Group does have a very specific focus, teaching advocacy skills to parents of children with special needs and sharing resources and information regarding services available to these children.

“Cathy” posted the following…

“I agree it is important to get parents talking and involved with the group, but let’s be more specific because this group’s focus is about parents’ advocacy skills used for their children with special needs. I would rather see it stay on this topic because the group is specific. Know what I mean?”

I agree with what “Cathy” said. We talked about “Jane’s” post, sharing concerns that new parents coming to the group page might see that and be confused, because when one joins the first thing they see is the post page, not the ‘about’ page, where they would read the mission statement or a description of the group.

“Cathy” had agreed to come to my home and go over everything I had put together to date, help me determine if I’d forgotten or overlooked anything important. We discussed that maybe it would be a good idea to include “Jane”, so she would have a firm grasp on my vision for and the purpose of the group before the Organizational Meeting.

The next evening “Jane” called me and wanted to know, “What am I walking into when I come to your house?” She didn’t appreciate what “Cathy” had posted and defended what she’d written. I told her it was confusing and because the group hasn’t even met yet, because we are conscious of and trying to control the ‘marketing of the group’, “Cathy” and I thought the post needed clarification. I explained to her that I was going to post something in response but hadn’t figured out how to share my thoughts without upsetting anyone.

“Jane” wouldn’t let me get a word in edge-wise. She told me that parents hated service agencies and if the group was going to be run ‘professional’ then parents wouldn’t want to be part of it. I had to interrupt and tell her to just listen for a second because she hadn’t been allowing me to even finish a thought. I explained to her what the purpose of the group was. She explained that when she said a group that’s not specific, she meant a group that’s not disability specific. I told her that would have been fine, but that’s not what she’d written and that the group was not open to ‘anyone’, but parents and guardians of individuals with special needs.

When we’d hung up, I went on the post and shared the following:

“Thanks “Cathy” for clarifying that the group does have a specific focus, I’m concerned that folks just coming to the group will be confused, as I’ve already had several people suggest that they didn’t fully understand the focus of the group.

What “Jane” meant to say was that the group is not disability specific, which is correct.

It would be great if folks would interact, after all that’s what a support group is all about, sharing and listening, helping one another… I’m hoping that once we’ve all met we’ll get to know one another a little better and members will feel more comfortable about interacting.”

Later that day, the Regional Representative for our Sponsor agency posted the following:

“It was my understanding that the focus of the group is to teach parents advocacy skills to navigate the special education system. It is open to all “disabilities” and all families involved in the special education system. Does that sound about right?”

She was absolutely correct. I really appreciated her coming to the page and posting. The thread ended there.

Shortly thereafter, “Jane” made a new post.

“Let me correct myself. Please parents jump on board as parents need this support group to guide themselves on how to get what our special needs children need. You will then be able to better understand different agencies. I am a parent, never worked as a professional that got paid. I know I’ve talked to a lot of you that wanted this. My appoledgy to G.A.P.S and parent to parent.”

I responded:

” “Jane”, I appreciate that. I think it was just a misspeak. You knew what you were saying, but the way it translated via the computer screen seemed a bit confusing.

During this ‘start-up’ period, we need to be very careful about how we’re ‘marketing’ the group, to be consistent and clear so that parents don’t have the wrong impression about our purpose.

This is why I offered the announcement to the group to share, rather than anyone going off on their own to write letters or post announcements.”
She let me know that she would not be attending the meeting the next morning with “Cathy” and I, as she’d forgotten she had to watch her grandchild. She posted on her personal page:
“Life is too short! People in it should not constantly be telling you, “You are wrong”. I am 42 and learned way, way more then I should have the hard way. Not by my choices, but by others. I took responsiblity for those choices and kept going. Please, when you are as down in life as me, then you earned the right to correct me. Your cars, houses, material things. Seriously, I gave my all and still do. I will know I earned my way to my eternal home.”
“Any parents want to blow off steam join me! Kids health issues, school, probation, lawyers, judges, etc. jump on board. We all need to vent and today is my day, think I will do it tomorrow too…. Does anyone care to correct me for everyone to see. Take your best shot, lol!”
I wrote to her privately:
“I hope you’re not taking things on the group personally… No one was being nasty or trying to embarrass you. I appreciated that you posted that and explained. I was supporting you by saying it was just a misspeak. Parent to Parent provides a guide for starting a support group with things to do and not to do. I’m trying to follow that. They’ve matched me with three other support group facilitators who offered me guidance. They all told me to think about it and run it like a ‘business’.

I’m supposed to put together a ‘core team’ that’s all on the same page, operating from the same play book, so to speak. I wanted you on that team.”

She told people on her page that she “didn’t need belittled.” She posted on the group page:
“You agreed for me to try and put a fun, more free minded comment to try and get parents involved in the site. I see more parents on the other sites actually making friends and helping each other across the states. If this is to be like an agency run group, then I don’t belong here. The agencies in these counties fight off any advocating. Seriously, what help did I get. I want a group that helps other parents feel relaxed to be themselves and know they can trust the person that they are talking to. Hope you get three parents to come and they truely learn and can do what they need to do for their children. If you look back at your first postings. You will see more people read them, now maybe 5 or 6 see them. You look, “Cathy”, myself. How many parents does that leave. Just can’t do it like an agency our a strict business. If we can’t be real and relax, this will fail.”
I did not respond. I felt angry, I felt hurt, I could feel tears welling up in my eyes, as once again, I felt that someone I considered a friend had betrayed me.

In one evening she’d negated everything I had done to help her, belittled professionals, suggested that the Support Group wasn’t a parent-run group, but an ‘agency-run’ group and placed the blame for her own mistakes regarding the group on me.

I turned to “Cathy” for support, as she’d seen this unfolding. Immediately, I began looking for something I’d done that would have caused this to happen. I questioned if I’d given “Jane” the wrong impression, if I should have been more forceful with her when she would not let me speak about my own Support Group and kept telling me it was ‘this or that’ when she clearly did not understand.

“Cathy” quickly pointed out that all of that nonsense was not about me or even the Support Group, but about “Jane” herself.

After I collected myself and we had lunch, started working on the Group materials I realized “Cathy” was right. Even while writing this diary entry I realize, with more clarity, that I had done all that I could to provide accurate information to “Jane” and to include her in the process. I hadn’t done anything to provoke this situation.

“Jane” has a lot of issues with ‘the system’ and, I think, a lot of insecurities that have nothing whatsoever to do with me or my Support Group. I’m not sure where her bitterness for ‘professionals’ comes from, but I did realize that this mess was of “Jane’s” own making.

She refused to allow me to share with her the mission of the Support Group. She had not been involved since the beginning of the process, having opted out when asked, therefore had no real knowledge of what had or had not been discussed, considered, etc., and would not allow me to communicate those things with her. She was not familiar with the procedures or process of starting such a group. Rather than posting a question that was fun, that might get others involved, she’d taken it upon herself to make statements about the Support Group that were inaccurate, putting “Cathy” and myself in the position of having to clarify the focus and target audience of the group.

I don’t understand how someone comes into a situation ‘cold’ without any information and thinks they have the ability or right to make declarative statements, right or wrong, without even trying to get some facts, listen and learn before speaking?

I am sick to death of people not taking responsibility for their own decisions and mistakes. I’m not going to allow anyone else to put their mistakes and insecurities off on me. I will not allow myself to be the scapegoat for the shortcomings of others any longer.