First of all, I am the parent of 3 kids. Their names are Samantha, Annika and Jake. My oldest Samantha, born in 2001, had some seizures during the first few months of life and then showed signs of significant developmental delays and severe acid reflux. Through EI she made consistent progress and we had hopes that she may catch up to her peers or have mild delays someday. Then in 2003 she had a Status Seizure that lasted over 6 hours that left her Quadriplegic, with a Hypsarrythmia brain wave pattern that resulted in catastrophic Epilepsy with hundreds of seizures a day. Any dreams of Samantha being a typical kid were gone. I will never forget the words the Doctor uttered as I looked at my child hooked up to all sorts of wires in the hospital bed that day.
A number of years ago I was attending a parent support group once a month through Child and Family Connections. I remember the first day I attended, even more so the drive home as I realized I wasn’t alone. This feeling of the weight of isolation and the feeling like I was the only parent fighting these battles began to lighten. I wasn’t the only one and regardless of our children’s diagnosis our battles were so similar. I felt renewed and days had more clarity, just simply knowing that there were others out there that knew what we were going through made such a difference. Due to budget cuts CFC eventually cancelled their support group. The support group was such a ray of light in my life that I knew at some point I would start another support group someday.
Special Parents for Special Kids had its inaugural meeting in November 2007 in the basement of Crossroads Christian Church in Joliet. There were 2 parents and myself at that first meeting. For months we had 2 or 3 or 4 parents at each meeting and a couple times I was all by myself. One day I called United Cerebral Palsy to ask if I could give them fliers to pass out to families about the group…by the end of the call they had offered us free on-site childcare during the meetings. About a year later I was donating equipment to the Local Easter Seals and I asked if I could leave some fliers about the group...after I shared the details about the group they offered us a wheelchair accessible space for our meetings and a room filled of toys and tumbling mats for the kids during the meetings. From that point Special Parents for Special Kids has been steadily growing, reaching out to more and more families, offering that same ray of light that helped me not so long ago.
Thank you to God, my Husband, Crossroads Christian Church, United Cerebral Palsy, Easter Seals, and all the parents (especially those in the early days). If it was not for all of your support and help Special Parents for Special Kids would not be where it is today.