Networking: Good for You, Good for Your Child

By Peter Weiss, Volunteer, Parent Call Center

For years I watched the girl across the street get on the big school bus. Then I put my daughter, now 11, on the little school bus. I always hoped the little bus came first because I didn’t want the kids looking out the window of the big bus seeing my daughter. I didn’t want my daughter seeing the big bus. I always wondered, and still wonder, how she processes the difference. Truth is I cringed. I cried. I still cry all the time, and I’m 69 years old.

My name is Peter. My wife Maria and I are the parents of a child with multiple disabilities: ASD, ADHD, ID, DD, SD, ACC, and more, so there’s lots of letters. I don’t speak for my wife, but I can say for me that I am ever conscious of how the world is different for children with disabilities, different for parents of children with disabilities. Also speaking for me, I am educated with advanced degrees, yet I was powerless to help my child or to even understand how to begin truly advocating for her.

About 19 months ago, a therapist my daughter was seeing who was leaving where she worked made a list of things I absolutely had to do to help my daughter. That therapist was actually telling me I needed help and she was showing me how to get it.

It’s called Networking. She told me my daughter needed to be evaluated and diagnosed and where to go to get it done.

Mother and daughter sitting on bench I made a few calls based upon her suggestions. One call led to the next. UMass, CANDO Clinic, DDS, SEPAC, Seven Hills. Lots more letters. One thing led to the next as if all I had to do was take the steps. SEPAC and Seven Hills led to HMEA, ARC, MFOFC, FCSN. FCSN led me to their PCTI Advocate training which led to Turners Falls FCSN Call Center. FCSN and their call center is why I’m writing this.

So I’m going to the Call Center tomorrow and will be there with Ingrid, who is in charge, and the other interns and volunteers. I’m past my intern hours and am now a volunteer doing Pro Bono hours as a Parent Advocate. In case we have time, I’m bringing copies of my daughter’s IEP for us to look at since we have an upcoming IEP meeting and one of Ingrid’s mottos is the more heads, the better, which means at the Turners Falls Call Center calls are conferenced and “round-tabled” and all opinions, ideas and thoughts are heard before possible courses of action are discussed. As the calls come in, we’ll sigh and even almost cry sometimes, but as we do we’ll tell the parents how glad we are they reached out, that they’re not alone, that assistance is available. We’ll offer it in the context of Special Education law and we’ll provide available options as well as avenues for them to get further assistance, or, for them to network and see where the networking leads.

For us, nineteen months later, my daughter is diagnosed, part of DDS and all its services. She went to camp this year, goes to vacation club during school holiday breaks, she has ABA services and a whole lot more.

Me, I am part of our SEPAC Committee, I help out in my own way here at FCSN, at HMEA and Seven Hills. I know where to go when I need help, and when things are really tough, like I know they can get at times for all parents of children with special needs, I know who to call to talk to.
I wish I wasn’t so shy. I wish it still wasn’t so hard for me to reach out for help. But when I look back at where my daughter was before I did reach out and where she is now, I can only say three words: Networking, Networking, Networking.

FCSN, PCTI and FCSN Call Center are part of those three words.