Contact Us

We're always looking for ways to improve our content.

100 Nicolls Rd
Stony Brook, NY, 11790
USA

(631) 632-6947

The idea is simple. Let’s teach each other about each other. About our health and wellbeing. And about our illnesses. Furthermore, let's dispense this knowledge to our surroundings. Because an illness changes with perception, and this perception can make all the difference in the way we live.

Student run. For the student in each of us.

Stories

Lillian

Neha Kinariwalla

 Lillian chose to not provide a photo. We respect the rights of patients to preserve their privacy.

Lillian chose to not provide a photo. We respect the rights of patients to preserve their privacy.

My daughter is 24 years old and she has autism and mild mental retardation. When she was sixteen she also developed epilepsy and has grand mal seizures since then. My experience parenting a child with a developmental disability I would call a journey. A journey with many twists and unexpected turns. Some good, some horrible and some remarkable. Parenting any child is a lifelong challenge, but one with a disability is ten times more difficult. I think if a parent were to see what is ahead they would be terrified with the responsibility. Learning to adapt to the daily struggles a child with a disability goes through has been a process of learning to accept the good with the bad. I feel like I have evolved from a young mother completely unaware of how to navigate the system. I now can advise families newly diagnosed with good advise and give them hope. Twenty years ago autism was barely spoken of except for the references to the movie Rainman. Compared to today, the information on how to help my daughter was scarce. Thankfully I met many wonderful people who have guided me on the path. I learned to become an advocate for my child and I was able to provide her with quality services throughout her school years. I felt a sense of accomplishment for being able to have her attend wonderful schools that were providing new strategies for working with autistic children. The hope was that she would recover with limited deficits. Even though this did not happen completely, she did benefit from these programs and is further ahead than she would have been without them. We have undergone many transitions. Recognizing her strengths and accepting her weakness has helped me advocate for the proper services that would provide the best opportunities. I have been disappointed and for the first time have felt frustrated by the lack of quality services on the adult level. Once your child graduates from the educational system they have very limited options. Even the most high functioning adults struggle due to the social aspects of their disability. My daughter will never be able to independently travel or be left alone at a job site, leaving the chance of her working at this point impossible. Having done my best to obtain the highest level of services throughout her life has been a bitter disappointment. Hopefully with the growing number of autistic people in our society there will be more of a effort placed in this area. Having satisfying work experiences and good recreational and social programs would give people with developmental disabilities like autism a better standard of living. Having our children reach their fullest potential..whatever that may be.. is what all parents want. Autistic parents are not different. I believe parenting my child has given me a different view of life and made me appreciate the things many of us take for granted. I have learned to be patient. I have had the ability to see life from a different perspective. For that I am grateful.