We spent last week at VISIONS Center on Blindness (formerly Vacation Camp for the Blind) with Benjamin and had a great time all around. VCB is not too far away from us, but it is on a big piece of property in Rockland county and was a nice break from the city.
The week we were at VCB it was reserved for families with children with visual impairments up to 5 years old and children with multiple disabilities of any age. And while every kid is very different, it was really good for us to meet other parents who understand first hand what it’s like. Other weeks throughout the summer are set aside for older kids and adults, so Ben can look forward to visiting VCB for a long time.
Ben got to play all day, socialize with other kids and go in the pool while Amy and I went to workshops and parents groups (as well as a good amount of just plain relaxing). Each evening the center ran events and even had a couple of parties.
The counselors and the staff at VCB were amazing, wonderful people who could not do enough for the families staying there. You could tell how much they cared about being involved at VISIONS. It really made it special.
We are grateful for the friends we made at VCB and we can’t wait to meet up again. Special thanks to everyone at VISIONS for a great week and to everyone who helps support it, including our regional Lion Clubs.
And now for some cute photos…
Cabins at VCB
Ben hanging at the pool
Ben and counselor Steph
A book before lunch
Reading is fun
Ben in the pool
Going for a stroll at camp
Ben and his teacher Dawn
Otilia, Cameron, Al and Ethan
Ben and a bunny
At the petting zoo
Ben pets a goat
Amy, Ben and I drove up to Boston this past weekend for the Early Connections conference at Perkins School for the Blind. The event is centered around educating parents of visually impaired children up to 7 years old. It was really wonderful to meet other parents who have similar stories and meet their kids. One of my favorite sessions was a panel of visually impaired and blind teenagers who were about to go to college talking about how their parents helped make them independent by treating them like any other kid – making them do chores, not coddling them, not having lowered expectations. Watch out Ben — looking forward to you doing the laundry!
They also had tables set up from different organizations and vendors showing off their accessible gear. During the conference Ben got to have fun while his folks were learning with a full scheduled day with the other kids.
Perkins was a beautiful campus and has amazing facilities. I wish we had something like it in New York City. But of course we were so busy we never even took a picture – so I have nothing to share today.
We also had a nice visit with our Boston friends. We will be back again, so maybe pictures next time!
As you probably know, Ben is blind. We don’t say it in the blog outright like that very often, but that’s the situation. When people hear the word “blind” they often think 100% no vision, complete blackness. But most people who are blind have some light perception or can see outlines, shadows, etc. Legal blindness (in the US) is considered “central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less.”
So what can Ben see? People ask us this a lot. We don’t really know and we won’t until he can tell us. But because of the ROP his retinas are detached and while we might be able to get surgery to try to reattach them, he won’t ever see much at all. Right now he definitely has some light perception. You can see it when he is in very bright sunlight he will scrunch his face up. Also when using a light box Ben will sometimes reach for items placed on it (we think). If he has any vision at all it will be out of his right eye. His left eye is much worse. It had much more aggressive ROP disease and is much smaller than his right.
In order to help keep his bones growing the right way, and specifically the part around his eyes, we have been trying to get Ben to wear an ocular prosthesis. It’s like a very thick contact lens that is covers the whole front of the eye. When he’s wearing one his left eye looks more even in size but it’s not the most comfortable thing in the world. Ben is very good at getting them out. The longest he has kept one in is a week and a half. And believe me, it isn’t fun trying to get it back in. We are actually going to take a break on it and try again in the summer when going back and forth to the prosthetist is easier. It isn’t really necessary yet, but the earlier he gets used to it the better.
There has been something new we noticed though in Ben’s eyes… look at the photo below – what do you see (besides a tired baby who is still messy from dinner)?
Red eye (well a tiny little bit of it)! Red eye is the flash bouncing off the back of the eye and when your retinas are not attached or there are other issues in the eye you may not have red reflex at all. Ben never had any in the past that we noticed – but that little sliver of red is interesting. (Though note – we are not putting too much into this)
Anyhow, vision or no vision, Ben is fine, happy and healthy.
Benjamin is an extremely lucky little boy. He has family and friends who love him so much. He also has organizations that have helped him and will be there to help him in the future. One of these organizations we are grateful for is Lighthouse International. Lighthouse is where Ben’s early intervention is organized out of and they have been fantastic helping us get everything possible to help Ben get a good start.
So when our friends Greg, Matt, Jo-Ann and others asked if they could throw a benefit in honor of Benjamin, Lighthouse was one of the first places we thought about. So we are super excited to share that Greg’s company JP Reis is going to host an open mic evening in New York City to raise money for this great organization
Everyone is welcome so bring your singing voices, instruments and dancing shoes for a fun night of musical free expression; you can bring your whole band if you like! The list of guests and confirmed musicians is growing fast. Entry is free and there will be happy hour specials. At the event there will be opportunities to support Lighthouse and hopefully I will be able to share a link for donations even if you can’t attend.
You can RSVP here.
Event: Rocking Wall Street
Date: 12th September
Time: 6pm the music starts at 7pm.
Place: Suspenders Bar, 111 Broadway, Financial District, New York
Lighthouse International has led the charge in the fight against vision loss through prevention, treatment and empowerment for over 106 years. We know that Lighthouse will continue to be a resource for Benjamin as he gets older – and we are proud to be a part of this event.
Thank you so much everyone involved in planning this – it means so much to us.
(also – we know we haven’t posted in forever, but we have lots of photos and updates from our summer… for now, accept this cute photo as a placeholder)
Benjamin at the PEZ factory
Yesterday Amy and I took Benjamin into Central Park to watch a Beep Baseball game. Beep Baseball is a modified version of traditional baseball played by visually impaired and blind athletes. The baseball itself beeps, so the player can hear it and when a batter hits the ball he or she must run to a “base” which is one of two padded posts (randomly chosen) 100 feet out from home base. The base buzzes and the player has to reach it before the fielders find the ball (still beeping) and hold it up. (You can also read a great article the 2009 Beep World Series here)
The teams playing yesterday were the Long Island Bombers against a team from the radio station WFAN. The Bombers team are “a dedicated group of baseball enthusiasts from the Long Island and Tri-state area. They just happen to be blind and visually impaired.” While they play their regular season games against other visually impaired teams, most games are against teams, like WFAN, who have sighted players, using blindfolds.
Imagine hitting a ball based only on sound
The Bombers played a great game and showed some real athleticism, beating WFAN 9-1. Maybe one day Ben will play on a beep baseball team. Even if he doesn’t we are glad to know there are teams like the Bombers educating people about blindness and overcoming obstacles.
LI Bombers pose after beating WFAN 9-1
Best of all it was a beautiful day to be in the park. Ben enjoyed the grass and got in a nice long nap during the game (takes after his dad who has napped through his share of televised Mets games).
The boys enjoying the game
In other news, Benjamin will go back to the hospital at the end of the month for a follow-up EEG to see if the anti-seizure medicine is working. He will stay a couple of nights there. But as far as we can tell, the vigabatrin is really helping with his infantile spasms. We haven’t seen one in over a month. Fingers crossed his EEG comes back normal too.
Yesterday Benjamin had his follow-up with the eye surgeon and we were not surprised by the news. The blood has finally cleared up in the right eye, but unfortunately the situation there is similar to his left eye – the retinas are folded. What does this mean? Since the retinas are still stiff and are not unfolding, Ben will have extremely impaired vision – as in almost no vision. We suspect he can see very bright lights, as he reacts sometimes to the sun and lights shined directly into his eyes, but he probably can’t see much past lights and shadows. The surgeon said there isn’t anything more that can be done at this time. But he hopes that over time (as in a year or more) his retinas will become softer and then he can attempt to re-attach them. We have another appointment in 2 months and at that point we will see where we are. We will probably also consider a second opinion to fully explore our options, but Dr Lopez is _the_ guy for this sort of thing.
The funny thing is – Amy and I left the appointment not too shaken up about it. We had already come to terms with this and expected to hear the news. We are ok with it.
You may say “With technology always changing you shouldn’t give up hope.” The thing is, we aren’t going to place our hopes in some future technology – otherwise I’d be researching longer pants for when technology can make me 6 foot tall. Ben is what Ben is – and we’re going to make the most of what that means.
It will be different – yeah. But it’s not like we have ever raised a kid before anyway. As I told a doctor today when he told us to let him know if we noticed anything unusual – “We’re first-time parents – it’s all unusual to us.”
We’ll figure it all out, and Ben is going to be great.
Also, on a related note, Amy and I recently watched a trailer for an upcoming documentary on blind teenagers that really moved us. I shared it on Facebook, but I also want to share it here.
The film seems to be a labor of love – you can find out more about it here: http://www.doyoudreamincolor.org/