We had a ton of people join our community this week so we wanted to do a quick weekend shout out to them in the order that they registered!
We also wanted to highlight our mission statement this week to make clear that we are an inclusive community and welcome diverse voices!
It’s an all encompassing label, yet we let a diagnosis divide us among this powerful group of advocates and caregivers into categories of rare and not-so-rare diseases, genetic conditions, developmental delays and the unexplained afflictions. We have more in common than separates us and Support for Special Needs is the community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know. Join us as we learn from each other about how to help our kids and ourselves.
Now let’s meet our new members! Click their names to reach their profiles and say hello to them! Ready? Set? GO!
Barbara – “Mother of 9 yr old child with special needs”
Heather Pierini – “I am the mom to two girls, almost 9 and 3 months.”
Jacki – “My daughter has ADD with Cystic Fibrosis and Cerebral Palsy”
Rachelle – “I am the mother to a wonderful most precious angel with special needs. My daughter Alyssa has OPCA (a degenerative brain disease), Cerebral Palsy, Microcephaly, ONH (optic nerve hypoplasia) Infantile Spasms (a form of Seizures), developmental delay (almost 2 and at a 6 month level) and has a G Tube. She is the happiest most beautiful baby girl I know. I was devastated at first but came to realize that God chose me to raise this blessing and I thank him every day for her. I stay strong so that she will stay strong. I used to pray for healing but them realize that in order for God to heal her he would have had to make a mistake when he created her. God does not make mistakes. Now I pray that he will just keep her happy and make her the best she possibly can be. I have my moments when I must cry and morn that child I dreamt of but I never let her see me. I use the shower for that release period. I know that for me to dwell in her short comings would only take away from the time I have her since with her degenerative brain disease I do not know how long God will bless me with her. She was born with 3 rare diagnosis so we say she is extra special 3x’s over. I love her more than anyone could ever know and I would not change her for the world. She is my precious angel.”
Keely Miller – “I am a Mom of 3 children with special designer genes. I have learned that “Variety is the spice of life” and we sure do have a variety of things going on in our family. Our Geneticist is working on finding the main ingredients! My youngest and I have been diagnosed with a duplication on our 13th Chromosome and my other two are in the process of diagnosis with Genetics.”
Lynne McKenzie – “Mum of two beautiful children. The youngest, my son, requires 24hr care.”
psmadel – “mom of child with EEC Syndrome”
Alicia Harper – “Navy wifey; SAH mommy full-time to 3, part-time to 1; 2 year old son dx hydranencephaly; full-time psychology student; contact for the International Hydranencephaly Group for support/resources/information for families facing dx; and in love with my life!!”
Joy Owens – “I am a mother to a 10 year old boy who is living with a severe congenital heart defect. He has had 8 surgeries in the last 7 years with more in his future. It is a chronic and life threatning illness with no cure. In January of this year our 2 1/2 month old baby boy died because of a severe heart defect. all 72 days were spent in the hospital. We also have a healthy 11 year old boy and 7 year old girl.”
AidelMaidel – “I’m the 30something mom to a bunch of kids, including, but not limited by, one teenager on the autism spectrum, one 8 yo with Retinitis Pigmentosa, a visual impairment, ADD, APD, and some neurological impairments, and two more who are (seemingly normal). We’re orthodox Jews who live in NYC. I’m happily married and work a full-time, full-stress job.”
Nancy Powers – “Adoptive mother of two school-aged sons”
Cheryl Crisp – “I am the adoptive mother of a child who is medically fragile, ventilator dependent, and has multiple disabilities. In addition, I am the pediatric clinical nurse specialist at a diagnostic clinic for children with a wide variety of special needs including autism, developmental delay, mental handicaps, medical disabilities, and learning disabilities. Working with these children and families is my mission, and I will do anything I can do to help them in any way I can, because I know firsthand what having a child with special needs is like. I consider toys to be a very special type of assistive technology, because the allow children to communicate in a way that they otherwise might not be able.”
Laurie Sweeney – “I am 53 years old, working in a PhD in ED Psych. I have been an adoptive and foster mother for over 30 years. Most of my kids have been some combination of Bipolar, FASD, RAD, ADHD. GB is 7 and her parents’ TPR was approved on 7/28/2010. She will be finalized in a couple of weeks. She has FASD and Bipolar. I have an adult son, J, who is Bipolar and doing very well. I have 2 legally adult children, living at home, MK, who is Bipolar, FASD, EX-RAD and a new mother, and D, who simply isn’t functioning. We successfully adopted a 4 1/2 girl, Hope, on August 26, 2010 from a dissolution who is Bipolar, Rad, and had been diagnosed PPD-NOS (PPD-NOS has been removed). I will be a SAHM for a while, then finish my dissertation.”