SpedPAC

A phone call about trying to find child care for S&E sparked the interest of my coworker who told me she received an email for a meeting for parents of children with special needs. She gets all the local emails like these because of her role as a case worker.
I took the email and decided I'd attend.
The meeting was last night and was JUST what I needed. A room full of concerned parents who are clearly their children's best advocates...braving the freezing weather at 6:30 pm, coming out for a chance to speak with the Dir of Special Education in our city, to ask questions, general and specific, and attend a training on effective communication in an IEP meeting.
I asked a couple of questions, and as soon as the presentation concluded two moms rushed up to me. "Hi, we also have children with physical disabilities." All of a sudden I got choked up. It felt so good to have other moms who "got it" come over to me, share their stories, and "welcome" me into this group.

The name is Special Education Parents Advisory Committee, and it's a lifesaver. I was the only mom who has yet to have an IEP meeting, and they took me right under their wings. Two of the moms have children with CP, and they have the same neurologist as Edwin. Another mom has a son with Autism, who, after 11 years just got a diagnosis of a rare genetic disorder that day. Another mom has a son with Downs Syndrome, and yet another has an adult daughter who has an intellectual disability.
After we chatted, we went to what they call their "therapy" session. We went out to a restuarant, had appetizers, and wine or beer depending on your preference. We shared experiences, they gave me great advice, and we exchanged information.
Prior to this, I have only one "real life" friend who has a child with special needs, and her advice and support has been priceless...she has helped me in so many ways. From getting hippotherapy for Edwin, to referring me to the augmentative speech clinic for Edwin, to sending me what a vision statement SHOULD look like. The only difference is this friend lives in another town, and meeting the moms from SpedPAC provided me with information about which schools in my city were good, which ones to avoid, and specifics about teachers and administrators in our area. I hope my friend will join us for meetings and "therapy" as well (email to come Ms Lady.)

In part because I am a young mom, there are very few people in my peer group who have children, and those from high school who do, well, let's just say we don't have much in common considering they still go out to the clubs every weekend...
I have a friend from college who has twins and she has been a huge support as well, and we NEVER see each other and this has to change!!! So in being a young mom, I feel disconnected from my peers, and don't feel I have people to talk to. Add in that I have medically fragile children with special needs, and well now I really feel isolated. Until I realized there are other moms out there like me! In fact, one graduated from the same college I did...granted it was 20 plus years before me, but still! They were so nice, so welcoming, and again, they so "got it."

I am so excited to really get involved with the Special Ed Parent Advisory Committee. We meet every month, and I look forward to all I have to learn from these moms who have been through special education...the ups and the downs. It also gives me direct access to the Dir of Special Ed from our city, who was so willing to answer questions, and seemed to know many of the other parents children specifically. In fact, the mom who is a fellow HC alum, personally called him when she was called on a Fri afternnon to be informed that as of Mon there would only be a nurse part time. This would be unacceptable, as her son has a severe seizure disorder. He personally took care of the situation and everything was all set. (Here is where I was informed that I need to have it on the twin's IEP that there is a full time nurse at the school every day given their chronic lung disease and Serena's reactive airway disease.)
Anyway, I already feel more prepared for school, and will learn even more through the annual conference in March (presented by the Federation of Children with Special Needs) and the continued meetings with SpedPAC.

So, if you are a parent of a child with special needs, and you feel somewhat isolated, I'd highly recommend getting involved with your local Parent Advisory Committee.
It gave me so much hope for S&E's futures, listening to these amazing moms tell their stories. Thanks ladies...