AW: What was your first reaction to your child's diagnosis?
DS: Our daughter spent the first 16 months of her life in a Russian orphanage. When an infant experiences early deprivation, it is very difficult for there not to be some type of negative effect. That being said, it is very different knowing that there will be issues and actually hearing a diagnosis…or in our case, multiple diagnoses.
I think it is typical at the beginning to want to believe that the doctors are wrong. But I didn’t spend much time doing this, because in the midst of disbelief, I was also searching for answers, treatment options, and solutions.
AW: What was your defining moment of acceptance?
DS: I don’t really know if there was a definitive “moment of acceptance.” As a mother, you want the best for your child. So although I wanted to disbelieve the doctors, I also immediately got into action to figure out what to do. I understood the concept of early intervention, so I was aware of the fact that I did not want to lose any time. So while I worked through my emotions, I also worked through a treatment plan. By continuously moving ahead, I guess I just found myself in the company of acceptance.
AW: What inspired you to start your blog? Website?
DS: I used my professional training as a researcher to find solutions to my daughter’s problems. As time went on, I met many parents who did not know where to start or what to do. I spent a lot of time on the phone and having coffee with other parents, trying to share my problem-solving process. As my daughter entered her teenage years, I found I had more time of my own. I had the desire to share with other parents, but I wanted to do it on a bigger scale, more than just one parent at a time. I developed a three stage problem-solving process, where each stage contains custom steps to walk parents through the special needs issues.
My blog, Help! S-O-S for Parents, was an off-shoot of what I now call Step-by-Step. I started the blog with the idea of sharing more information with parents, but not really knowing where it would go. It has developed into a place to conduct book and product reviews, interview experts, highlight useful resources, and document tips.
What has been your most rewarding aspect of being special needs writer/advocate?
It’s an amazing feeling when another parent comments that something I shared is exactly what they needed. Being able to help parents solve a problem or find what they need is such a rewarding experience. It sums up why I founded S-O-S Research.
That being said, another fabulous benefit is getting to know all the talented, bright, and wonderful parents who are also blogging, writing books, giving talks, and sharing what they have learned. It’s a great community and I am proud to be a part of it.
AW: What advice would you offer parents of recently diagnosed children?
DS: I am not a believer in the wait-and-see approach. Once your child has received a diagnosis, you need to get to information as quickly as possible in order to formulate a treatment plan. Once a plan has been established, parents will probably need to coordinate with their local school district to determine how they can work together to make everything happen.
Parents should be prepared for the school district to progress slowly. Districts are busy and overloaded. This is another reason why it is important to acquire your information quickly and to get things moving.
AW: Feelings on diagnosis in 6 words or less.
DS: …opened my eyes, softened my heart…
Post a Comment
AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.