about

We started this support group to reach out to other parents who were in the same situation. Our goal is to raise awareness about sensory processing difficulties in children and to help support parents in our community. We are advocates of recognition of Sensory Processing as it's own disorder while at the same time we invite parents of children with a variety of disorders that include sensory processing difficulties to attend our meetings. Talking with other parents is therapeutic and makes us all feel we are not alone in the everyday behaviors and situations we encounter with our children.

“Sensational” Jonathan

Hi, my name is Caryn Daher and I am a co-host of CNY SPD Parent-Connections. I have a beautiful 5 yr old boy, Jonathan.

Jonathan was 2 yrs old when we were first made aware of his sensory processing issues by his speech therapist. Since then, it has been a very long journey filled with frustrations and triumphs as we continue to learn about Sensory Processing Disorder.

Jonathan was a very “busy” boy, constantly seeking sensory input by crashing & pushing into people and objects and by engaging in repetitive behaviors, such as flipping light switches on and off continuously or opening and shutting drawers repeatedly. He had extreme sensitivities to certain types of food, temperatures and especially to particular noises. He very often had difficulty in calming himself once stimulated, whether in excitement or in a tantrum.

As parents, we had to learn to toss out the rule book. We learned that we had to remain objective and find a good balance between helping Jonathan with his issues while also guiding him to understanding the boundaries in life. We have learned to cherish the little things and that small successes deserve huge celebrations!!!

We have been fortunate to have wonderful professionals working with our child. Jonathan began his journey at 18 months old when he started speech therapy. Since then, we have had speech therapists, occupational therapists, special education teachers and psychologists working together for our son. They have taught us how to help Jonathan at home and our lives have started to become tantrum-free and happier. We understand our little boy so much better and we are helping him to understand himself and his needs.

I helped form this support group because my husband, Fran & I needed to meet people with whom we could share what we were going through with our son. It has been so rewarding to share experiences and ideas with other parents. In addition, because not many people have a true grasp as to what SPD can entail, it can be hard to find the understanding and support that is so desperately needed

We are fortunate that our child’s needs lie primarily in the realm of sensory. He no longer receives occupational therapy. However, that also has its drawbacks. I have become an advocate for the diagnostic recognition of SPD (Sensory Processing Disorder) because if Jonathan needs to get services again at any point, he may not be able to get them without that recognition. Jonathan, at age 5, has improved tremendously. Recognition of SPD will help to promote his continued success.

“Sensational” Jonah

Hi, my name is Michele Hawthorne and I am a co-host of CNY SPD Parent-Connections. I have 2 children, Jonah, age 6 and Declan, age 10.

As Jonah started approaching 3 years of age we noticed that he was not developing like his older brother or some of his friends. He began to lose language and have anxieties that he did not have before. As his 3 year old check up approached I decided that I would discuss these issues with his Pediatrician. During his exam he screamed the entire time so I did not have to convince the doctor to request an evaluation. A few months later as my husband and I sat in the room with Jonah’s evaluating team our lives changed forever. The words “Sensory Processing Disorder” became an everyday part of our life.

We changed our entire approach to parenting, education and social situations. Disciplining Jonah had to be handled differently than for a typical child. We had to understand how education and therapy would need to work together so he could learn while acclimating to his surroundings. In social situations we had to discover through trial and error what would work to make Jonah more comfortable and calm. To make such changes we have had to educate ourselves, our older son, extended family and friends about Sensory Processing Disorder and its role in how Jonah reacts to the environment.

I decided to start this parent support group with Caryn because there were no support groups in this area for SPD and there are so many therapies that can help with a child’s sensory processing. I also realized the emotional toll it took as a parent to deal with the difficulties of raising a special needs child. As a family we are fortunate that our older son is protective and loving and does well with his little brother’s difficulties. Our friends have been a great support system to us, and when we are together they are supportive, helpful and understanding of our situation with Jonah. We also have been very fortunate that all of our doctors, therapists and educators have been knowledgeable and helpful with Jonah’s Sensory Processing difficulties. Our extended families have offered their resources and are respectful of our parenting decisions when it comes to Jonah.

I always remind myself of two things: parenting is a continually evolving process, and I can only take one day at a time. My motto for my son is that SPD is an explanation but not his excuse. As Jonah grows and learns to live with SPD he will understand himself better than the rest of us know ourselves. Hopefully this will help give him the tools for a happy and successful balance in his life.