Seven years ago I lost a job that meant a great deal to me. The agency where I worked and the office politics were terrible, there were questionable things going on within the agency with finances and various levels of discrimination and preferential treatment, but the families I got to meet and work with were incredible inspirations to me and the work I was doing was incredibly fulfilling.
For someone who was conditioned to be a ‘care giver’ and who measured her self-worth through what she could do for others, it was the perfect job!
I worked for a disability rights organization that promoted the ‘independent living movement’. My position had quite a broad description of responsibilities, but the thing I specialized and excelled in was Special Education Advocacy.
As a person with a disability and the parent of a child with special needs, I was able to connect with parents in a way the average ‘social worker’ or teacher couldn’t. Parents appreciated having another parent to talk to and to help them navigate the special education system.
I had a good reputation and working relationship with many school districts, service providers and area agencies that I was able to ‘partner with’ to create and facilitate strong and supportive teams for students requiring special education.
When I abruptly lost that job, I felt like someone stripped my identity from me. I experienced a huge void that I never fully restored. Many of the parents I had been helping called numbers in the phone book with the same last name as mine, trying to find me, until we were able to reconnect and they asked me to continue to help them. As recently as last year a mother called me and told me I’d helped her son years ago and she needed my help again.
Six years ago I was encouraged by a staff person at an organization for parents to facilitate a support group for parents and care givers of persons with Fragile X Syndrome, the disorder my son was diagnosed with. I put together resource materials, started a Yahoo Group for the Support Group, bought folders, created stickers, brochures and flyers and scheduled monthly meetings, but no one attended.
Last night that same organization for parents called me to update my information, as I’m registered as a parent ‘mentor’ for the organization and they wanted to be sure I was still available. While talking with the staff person they asked me about my ‘defunked’ group and whether I was interested in starting another support group in my area. I told her I had thought about it, a support group for parents of disabled individuals (children or adult) that would provide information on services available and how to go about accessing services. She suggested that was a bit broad and might have a difficult time attracting regular attendees.
I told her a bit about my past experiences, both as a mother of a child with special needs and as a professional advocate. She told me there was an overwhelming need for advocacy support in my area and asked if I would be willing to facilitate a parent advocacy support group.
I have been trained as a mentor for the Self Determination Consumer and Family Group of Pennsylvania and as a mentor for Parent to Parent of North Central Pennsylvania. I am a certified facilitator of Essential Lifestyle Person Centered Planning and been trained as a Parent Presenter to speak to colleges and educators in general regarding parent advocacy, special needs, disability sensitivity, etc.
I know I have a lot to offer other parents. I’ve been the co-chair of a parent group in the past, being responsible for preparing agendas, taking meeting minutes, putting together resource materials, preparing flyers, brochures, and maintaining a quarterly newsletter. I secured donations of refreshments and paper goods as well as financial contributions.
I’m excited to have a chance to work with parents again, even if only once a month, to listen, to share and to support others who are experiencing what I experienced as the parent of a child with special needs.
I told the parent organization that I would be willing to facilitate such a group. She suggested that I get a few other people involved so that it wasn’t just up to me to organize and manage the group and that we start thinking about a name for the support group and perhaps search out funding for the group. She offered to connect me with another parent who has started a successful support group as a mentor and that she would assist in any way possible, including mailings, helping us secure a location to hold the meetings, child care from a local college and refreshments.
As I was getting excited and my mind was racing a million miles a minute, I hit a brick wall, so to speak. I remembered that I’m dealing with a health issue that is undetermined currently, in fact I’m going to see a surgeon tomorrow to decide how to proceed and I’ve had a lot of stress lately with this mess with my Godson and knowing my husband’s overtime is going to begin this month which always means added responsibilities for me at home. I stopped and had to think about the affect of something like this on my emotional and physical health. I always jump in with both feet and assume too much responsibility and become quickly overwhelmed.
Thinking about this, I’ve decided if I take it slowly, as it’s my group, I’m not under any particular time constraints and if I have support and assistance, this might be a positive distraction from my own disabilities and the depression that I constantly battle. I’ll have to be aware of not taking on the stress of other parents, practice putting boundaries in place and maintaining them. I’ll need to designate time each month to work on the support group and stress that I’m not in the business of actively advocating for anyone any longer, my physical limitations prevent me from attending meetings with families and my short term memory loss gets in the way of me acting on behalf of other families appropriately.
This could be a positive growth experience for me, an opportunity for me to work on taking care of me, while supporting others, rather than it being an all or nothing, either or kind of situation, as it has been in the past. This also has the potential of offering me some social interaction that I’ve been missing, doing without, for a long time now. It could also foster new friendships and present me with a new group of people to interact with, to support and garner support from.