2013’s Life Lessons from Special Parents
2013 In Review: PSN Real-Life “lessons learned” from parents who shared with us throughout this past year.
Nisha Morris (Jan/Feb 2013)– Nisha shared about empowering her daughter, Nathasha, who has (CCHS) Congenital Central Hypoventilation Syndrome. Educate others about your child – with LOVE. Look at it as an opportunity to educate, explain and enlighten others about your child. Learning to just “go with the flow” is also a big point that Nisha wants to share with our readers. The greatest lesson Nathasha has taught us is to listen to HER needs. By listening to her needs, we empower her, even at age 4, to make decisions for herself, making her more independent and ultimately, responsible for her own care. Read what else Nisha shares about
Michele Gianetti (Mar/Apr 2013)– Michele’s daughter, Elizabeth, has dyspraxia and Sensory Processing Disorder (SPD). “I think some of the biggest challenges we faced were in trying to get people to understand her and understand her disorders”, she said. To be her advocate is a job that takes many twists and turns. But, I think getting someone who will be working with her, to truly understand her, is the first and biggest step. Making a move in a game of chess is similar to making moves for our children. We have to weigh each move and outcome and be ready for what takes place. Michele also credits assembling a great team as an additional factor in success. Read what else Michele shares about
Big Daddy (F. Lewis Stark) (May/June 2013)– Humor and acceptance are crucial. My family uses creativity, humor, and acceptance to overcome adversity. Sometimes laughing is better than crying. He feels that sometimes he has to revel in the uniqueness and lunacy. I am blessed to get to spend so much time with such a unique individual. Also, I do not tolerate the intolerant. When people stare at, or mutter about, Griffin (my son with autism), I stare right back and get right up in their personal space. Read what else Big Daddy shares about
Ken Stewart (May/June 2013)– The love of a father is an indescribable bond; someone who loves you unconditionally and is an Advocate always. Ken Stewart shares a lesson he learned on an incredible journey between his twenty-four year old daughter, Kaitlyn, and himself…literally.
What started out as a life skills project turned into S.G. Adventures.
The lesson learned is that “little efforts every day can turn into big breakthroughs at any moment”. Parents, in general, not only those of special needs children, know that sometimes greatness strikes from the smallest of situations. Read what else Ken shares about
Valerie Strohl (July/Aug 2013)– Shared about creating opportunities for independence for her daughter, Sarah, who has Down Syndrome. Overcoming Control and pride is key for raising a special needs child, I have this child who every doctor tells me is going to struggle to fit in; Sarah taught me to give up my need for control and the desire for a family that looked, performed, and acted a “certain way”. Actually, as a parent, it was quite liberating to let go of both control and pride, although difficult at the time. Read what else Valerie shares about
Janice Fialka(Sept/Oct 2013)– For Janice, her son, Micah, who has a cognitive impairment, helped her to overcome being upset because having a child with special needs wasn’t what I wanted or expected, but, with time and support, I gained a sense of tolerance, and taught myself that we have to reimagine our life in a story. I don’t know if the issue is really about “overcoming”. I learned a lot about that term in the disability world. I learned that overcoming isn’t necessarily what we do…it’s learning to integrate what his difference can do to transform us.
Janice also shares about the importance of partnerships in “A Dance That Matters”. Very early on (partly because I was a social worker) before Micah was born, I had some understanding of the importance of connecting partnerships between parents and professionals, as well as, clients and professionals. But, then when I was on the other side of that dance (as I like to refer to it), I didn’t always feel understood and, in some ways, valued by the professional. So, I knew that having a child with a disability was going to be challenging, but, I didn’t know quite how challenging. I also didn’t know how challenging it would be with the professionals either. Sometimes it is even more challenging than having a child with a disability. So I really had this quest to understand why it was that when people come together at a big table for a meeting…and basically are good folks who care about making the world a better place…why, then, is it that often times they end up “slamming on each others toes”. That was what most bothered and baffled me about being a mother and a social worker. That happened very early when Micah was young. A lot of people didn’t allow me my feelings…that motivated me. It made me want to share my story. Drop the “parent to professional” labels…we are all people. Otherwise, we won’t be as effective in our collaborations. Read what else Janice shares about
Carmen Noonan (Nov/Dec 2013)– Carmen’s son, Patrick, who has Autism, says it is a learning process; challenges come in different types or forms. For us, it is autism. We embraced it, and learned a lot, but, my child is much more than the autism he has. He is a wonderful person with so many gifts and blessings. These days, there is so much more accurate information available about autism. Recovery is possible, or at least you can minimize the symptoms, to have a better quality of life. Read what else Carmen shares about