We’re thrilled to introduce you to our friends, Bruce Campbell and Laura Veith, who started One Special Kid, an education support and services firm for New York City’s special needs families. They are doing truly incredible work around Manhattan and Brooklyn! Read their story below and learn more about how you can connect with them and their vision.
What’s your story? How did you two meet?
Laura: We met in Philadelphia in the winter of 2007. I had recently graduated law school and was taking stock of my life, which included reevaluating my living situation. I had a roommate who was on the road most of the time with his band. My apartment was small and dingy and our plumbing was constantly on the fritz. I responded to an ad on Craigslist for an apartment share in the next neighborhood over. It was a massive artist loft (4000 Sq feet with 20 feet ceilings.) So massive, in fact, that the current occupants had built out rooms, and converted the central living space into an incredible studio. This place was incredible! When I showed up to see the space, Bruce opened the door. I knew right away I wouldn’t be able to move in — this guy was seriously hot! I couldn’t be roommates with someone I had a crush on … But I went through the motions of seeing the space anyway.
I heard a few days later that they wanted to offer me the space. I politely declined, but told Bruce that it was always great to meet new people and invited him to hang out. The next thing I knew, we had plans to meet for drinks at The Standard Tap — local pub. Excited about this new adventure, I showed up ready to get to know this guy. I waited an hour and a half, drinking a beer and reading over legal documents at the bar by myself. Just as I was about to leave, and feeling low for having just been totally stood up, Bruce walked in the door. It turns out, he had all kinds of problems that evening, one of which included a flat tire on his bike and being stuck half way between home and the restaurant. I forgave him and we’ve been pretty much inseparable ever since!
I later found out that though they offered me a space in their giant artist loft, I was actually their 4th choice. (!!!) Apparently they they thought I wouldn’t be able to hack it in that giant loft space because heating 4,000 sq feet throughout a cold Philly winter is really hard (and expensive!), and they thought I was too high falutin to handle a cold apartment. Ha! Jokes on them. I basically moved in anyway, but didn’t have to pay rent. And Bruce and I eventually went on to become official “roommates.”
How did you both come up with One Special Kid?
Laura & Bruce: Our son, Willem, was diagnosed on the Autism Spectrum when he was 2 ½ years old. We were thrown head first into the special needs world with zero warning and little support, which is the experience that most families have. We had to navigate bureaucracy and red tape, a “special education language” we didn’t speak or understand, and try to fathom a complex system that seemed designed to neglect us rather than support us. All this, of course, while coming to terms with our son’s diagnosis for ourselves. It was lonely, isolating, and extremely terrifying all at the same time.
In the years since, we have gathered a significant body of knowledge. Unfortunately, we found researching this information and navigating the Early Intervention (E.I.) and special education systems in NYC so complex and demanding, that Bruce left his job to navigate it full-time. This meant we became a single income household just so our son could effectively get the care he needed.
In focusing on these efforts full-time, we began to ask ourselves some key questions:
(1) Why is there little support from the very systems designed to help us?
(2) Should every family have to do all of this?
(3) Why not have a one stop shop where we could outsource the management of this work, so that families could actually spend time focused on their child in the most productive way possible?
We believe that families should spend more time focusing on their well-being, engaging with therapists and teachers, and supporting their own needs and in turn, that of their child. They should spend less time on red tape, bureaucracy, and trying to navigate systems designed to confuse. They should be supported, and lifted up like never before as they come to terms with having a child with special needs and begin to acclimate to what that means for themselves, their child, and their family.
We want the educational placements offered to all children with special needs to be as successful and appropriate as it has been for our own son. (Willem is in NYC’s Nest Program, which has been so incredible for him!) And, we believe your well-being should be looked after in the process of attaining it. One Special Kid was born to bring this vision to life.
Does NYC, among all other US cities, have the most available resources for families whose kids have special needs or disabilities?
Bruce: NYC does seem to have an abundance of resources for families dealing with disabilities. Couple that with the fact that very often these services are free and it makes being in New York State and more specifically NYC feel like a blessing.
Our friends in other states – places where one might think there exist liberal support policies for those with disabilities – often complain to us about the insane amount of work and hassles they deal with and then marvel when we explain the comparable systems here. As an example, we have so far not had to rely on insurance companies to approve any services, in NY these actions are determined by state agencies.
Don’t get us wrong, there is still red tape, unfathomable bureaucracy, and the complexity of all the various services to manage. When you are dealing with a school system with roughly the same population as Dallas, TX you can start to get an idea of how all aspects, both good and bad, of servicing children with disabilities grows exponentially compared to the rest of the country.
What area/state/city do you want to focus on next?
Laura: New York City keeps us plenty busy for now! The number of families that need support seems endless, which is right because, as we all know, all families dealing with disabilities need some level of support. Right now we don’t have plans to expand our focus outside of NYC. But we have begun to kick the tires on our long term vision. One idea we’ve batted around is to open OSK up to special needs parents in other cities, who could lead a local OSK office. This idea came to us because my brother and his wife have a 2 year old son with Down Syndrome, and we’ve thought about the idea of offering them to lead OSK – Seattle (where they live). Our thinking here is that it would not only begin to branch our services out to those around the U.S., but would also offer viable income and employment to special needs parents who may have left the working world for several years to focus on their child. They would have chance to return to work in an area they know deeply and are passionate about, while not only balancing, but also being actively supported in parenting their own SN child. Balancing work and life is often such a difficult issue for working parents with SN kids. We are (obviously) extremely SN friendly, so our offices would always welcome working SN parents and their kids, crazy schedules, therapies during work hours, etc. Whatever flexibility and understanding is needed they would have.
What’s been one of the more surprising or shocking research points you’ve discovered on your journey developing OSK?
Bruce: One of the most surprising statistics we’ve heard mentioned is that up to 50% of families don’t even show up for their child’s IEP meetings! Although initially surprising, the reasons make total sense: inability to secure time off of work, language and cultural barriers, and lack of education and information about guaranteed rights and services. Ultimately, this means that many children are underserved or not actually placed in the most appropriate educational setting. We want to change this statistic to 0%.
What advice would you give to other parents or caregivers looking with needs like your son, Willem?
Laura: There are three bits of advice I would offer up.
The first is for parents of a newly diagnosed child. I spent the first month after Willem’s diagnosis crying my eyes out nearly every day. When I wasn’t crying I was obsessively researching, frantic to find a cure or the very best therapy or … just something to make it all not be true. To say I was a total mess would be an understatement. Others told me we would adjust to our new normal (and of course, we have — our little guy is so, so amazing — I wouldn’t change a single thing about him!) but when I was going through that I couldn’t handle people telling me that. My advice would be to give yourself space to grieve. It’s okay to not immediately bounce into your “new normal”. Autism, or any disability, is a serious game changer, and not likely one you ever expected would affect you. If that means crying for 30 days straight — then give yourself the space to cry for 30-days straight. But have someone you trust deeply support you through that time.
The second piece of advice would be to celebrate the rough days, too. There are days where Willem is well adjusted. And there are days when he’s struggling so badly that it breaks my heart or really tests my patience. It’s these hard moments, when stress is at max capacity; when he’s having an absolute meltdown about the fact that the Hubble Space Telescope is set to be replaced in 2018, or having to get his finger nails cut, or how his swimsuit sticks to his legs, or how he only caught two fireflies and not more — it’s these days when I actually see the most growth in him. Dealing with these struggles gives him new skills. And often times, those lows are followed by really incredible highs. It’s when new (and totally amazing) skills emerge. My advice would be to recognize those lows as opportunities — critical opportunities — that lead to new growth. They are imperative to your child’s development. Nurture and support them through these times, and you’ll all be rewarded with amazing things to come!
The final bit of advice would be to take care of yourself. I know so many parents with SN kids who literally never take time off. But you’re actually better able to parent if you have R&R time for yourself. Recognize that you are running a marathon and not sprint. Pace yourself, and take rests. A rested you is a better parent. Take advantage of respite care, if you can! Let yourself enjoy a drink after the kids are in bed, go out for dinner with grown ups, take an art class, go running — whatever you want! But have it be for you and you alone. You deserve it! (And so does your child!
– Bruce Campbell and Laura Veith, Springible Contributor