ROCHESTER, N.Y. — There can be a lot of first steps after a family finds out a loved one has special needs. Looking for resources was one of those for Veronika Mourgides.

“You really don’t know where to start, even when you expect a diagnosis, you are overwhelmed because there’s so many things that you have to figure out. You have to figure out medically what’s necessary, you have to figure out the school. Okay? He's going to be in special education. You have to figure out where is he going to go. There are waitlists for most of these special education schools, so it's not easy to get in. and then you also have to get therapies you want to be able to whether it's early intervention or whether it's through medical insurance, you know, occupational therapy, speech therapy, etcetera, etcetera. The list is very, very long,” Mourgides explained.

Her four year old son, Nathan, was diagnosed with autism two years ago.

“We started noticing signs that he stopped using words. He had probably 15 words by his first birthday and then, it just gradually stopped. That was one of the things. Another thing: he was walking on his tiptoes, lining up toys and not playing with them, functionally, how other kids would. He didn’t have eye contact, or it just gradually decreased. He never called me mama, or he wouldn’t listen to his name,” she recalled.

She became her son’s biggest advocate.

“He’s the handsome one, obviously, as you can tell,” she laughed and said.

She found ways to get her son more involved, but it was a challenge that many families with disabilities have to face.

Kristy Schworm was in a similar boat with her oldest daughter, Cassidy.

“When she was very young, she started showing, you know, some special needs, some behaviors,” Schworm explained, adding her daughter had been asked to leave many recreational activities as a child. “These weren't inclusive spaces. These were for cookie cutter kids that didn't have the same needs that she had. So we finally got her evaluated. We got her, had her diagnoses. She was diagnosed with Tourette syndrome, social pragmatic communication disorder, which is kind of similar to autism, ADHD and OCD. So she had a whole bunch of things going on and very little direction.”

Schworm did a Google search, where she found the real problem.

“Once we got the diagnosis, I started diving on Google, looking for resources, and I realized there's all these things that pop up, but very little that actually met what we needed for her. So I told my husband, you know, we really should look into maybe creating something out there so that people don't have to go through these struggles,” she explained. “So like, this is what I was dealing with. You type in medical providers for tourettes in Rochester, New York, and you get some that might be relevant, but there’s a lot that you can’t find.”

For the past two years, Schworm and her husband have been developing Navigate My Disability (NavigateMD), a 24/7 online resource platform for anyone with disabilities.

“What we wanted to create and what our platform will do is you'll go and you'll be able to put in what's relevant to you. So what diagnoses do you have? What medical insurance, what your zip code radius, what are you willing to travel to, and then it’ll populate the resources that are relevant for you,” she showed.

The website is a way for families to find resources and a way for others to provide resources. Schworm says that between families, care providers, recreational activities, not-for-profit organizations, service dog trainers and special needs attorneys, NavigateMD already has 400 people on its waitlist.

“Especially in the beginning, you feel very alone because you get blindsided with the diagnosis, like we truly thought, autism because of the behaviors that we were seeing in her, and we were blinded with this Tourette diagnosis," she said. "And you don’t know where to go. And we don’t have family members with kids with disabilities.

"I didn't at the time have many friends that had kids with disabilities. So you're in this bubble where you're like, 'OK, I'm the only person dealing with this, and ... I don't know where to go. I don't have anybody to bounce how I'm feeling off of or who can refer me to all these different things because it's like, right now I'm alone. I'm the only one dealing with it.' And then you find this community and there's a huge community, especially in Rochester, for people with disabilities. And once you get those connections, it makes a huge difference."

The Mourgides family is optimistic for the opportunity to be involved.

“Hopefully it's going to take that sense of overwhelm ... and the constant picking up the phone and calling a provider, maybe calling a place and see if, they can take your child for martial arts or whatever it may be. So I think it's going to take the guesswork out of that cut down on time, hopefully. And it will not just be good for, the parents, but also providers, care managers. and self-advocates, you know, some people who are adults with disabilities, I think it's going to be a great resource,” Mourgides said.

Her son is currently enrolled in a summer pre-school program. She’s hoping more resources as her son gets older, will only continue to bring out the best in him.

NavigateMD is in the process of being funded. After the financial resources are secured, developing the platform will take 4-6 months. Schworm is hoping it will be up and running by the end of next year.

To become involved, join the waitlist or donate, head to navigatemd.com.