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
We are very fortunate that Ben is a very good sleeper. He is great about sleeping through the night and wakes at a decent hour. But Ben does not approach sleep gently. He attacks it like a kid at a playground. He thinks bedtime is for acrobatics and leaps across the crib. Here’s just an example of what he does every. night. (and also shows off his new hair cut) <video>
In other news, Ben has been doing well on the food side – not that it still isn’t a struggle to get more food in him than he throws up (a lovely image – I apologize) but he has been easier to feed in general. In fact, he’s now 24 pounds! I know it’s not much for a kid who’s more than 2 years old – but for us, it’s wonderful. In fact – it puts him at the 6th percentile for weight. That’s solidly on the chart.
Ben also had a great time with his best buds, Jack and Jerome, this Independence Day – splashing and laughing. They also took a trip to the Brooklyn Children’s Museum – which was a bit much for Ben, but we’ll be back.
For the most part, when therapists and evaluators ask me what Ben’s receptive language is like, I have to shrug my shoulders. Though I’m pretty sure that he understands us, he doesn’t really follow directions. Repetitions of “Benjamin!” “Shake this toy” and “Where are your feet?” go unanswered for the most part, and it’s hard to say if that’s due to his inability to understand, or because he simply just isn’t into that.
But this Monday got a lot of excitement around these parts, because Benjamin, upon request, found his nose. Several times- so it wasn’t just a weird coincidence.
Strangely, as of today, said nose locale is less certain. We’ll have to practice some more.
Ben tries out his cane
Ben is just starting to walk but we wanted to introduce a cane to him right away. We don’t expect him to use it properly anytime soon – he doesn’t even have an O&M instructor yet – but we thought it was important to get him (and us) used to the idea of his cane as being a part of geting around. Right now he mostly thinks it’s fun to bang on the ground and chew on, but some day soon his cane will be his best friend. Learning to use a cane will be an important part of Ben being independent.
Benjamin’s cane is a free cane provided by the National Federation for the Blind. Special thanks to Barbara Pollard whose donation to the NFB provided the cane for Ben. You rock!
I’m sure we’ll be writing more about the cane as Ben gets better at getting around, and especially as he heads out into the wide world.
Also – you may notice the blog is changed a little bit. We gave it a new look and changed the title a little. It’s just “All About Benjamin” now – no more “baby.” Benjamin is growing up!
A little over a year ago, Benjamin was diagnosed with Infantile Spasms, a form of “catastrophic childhood epilepsy.” That sounds scary because it is. Not that the seizures themselves are what you would think of when you think seizures – they are small jerks. Like a big hiccup, where the baby jerks forward, arms go up – or even just like an exaggerated shrug. But if left untreated infantile spasms can cause a child to regress, stop developing completely and have “devastating effects.” (You can find videos online that families have shared so you know what they look like. If you think your child is having these spasms, go to the emergency room right now.)
Ben was treated (what we hope was) very quickly after developing symptoms and saw results from the medicine, Sabril (vigabatrin), right away and has been spasm-free for a year while on the medicine.
Well, just this month Ben has finally 100% weaned off the medicine completely and is doing great so far! In fact Ben is totally med-free. I don’t think there has been a full straight week where that has been true since he was born.
Now, I don’t want to jinx anything (you can take the baby out of the NICU, but you can’t get the superstitions out of the Dad) by celebrating too early because it might not always be that way. It is not uncommon that once a kid grows out of infantile spasms, they develop other kinds of epilepsy. But we’ll quietly celebrate this small victory in this small corner over here – don’t tell anyone.
In other news, we are heading up to Boston this weekend to go to the Early Connections conference at Perkins. It’s a one-day event for parents of blind and visually impaired children (birth to 7) to get together, learn stuff and network. We’ll tell you all about it when we are back.
And now as your reward for reading all of that – here is a cute photo of Ben wearing a tie.
If Ben has a dirty baseball cap he would look like a Hobart bro
So besides the walking thing, Benjamin has been a busy little guy travelling all over the place and having adventures. We’ll quickly bring you up to speed:
First (way back in February) – Ben went on his very first plane ride (that was not a flying ambulance) and visited New Orleans.
Benjamin did great on the plane, but wants to go first class next time
There was always lots going on in Jackson Square
Ben gives himself a round of applause
Next he returned to North Carolina in March for our annual spring break trip to the Outer Banks (with a short stop visiting friends in Virginia)
Ben loved the slide
Ben got lots of love from his buddies in OBX
This chair is enormous – but Ben is still small
Swings are almost as fun as slides
Jack and Ben play with Play Doh
Then Ben got his very first haircut (that was not done by a nurse)
A little off the top, Carlos.
Ben got in his first 2013 Mets game (they won)
Let’s go Mets!
Then just last weekend took a quick roadtrip to Montreal for some yummy food.
Canada is a little chilly
Ben and Dad out in Montreal
Of course not pictured during these adventures is about five colds, lots of puke, crying by all involved and a total of 34+ hours in cars (just for full disclosure).
Ok I think we are caught up now… we can get back to timely updates (including exciting Ben news in the next post)
I can only imagine that when you can’t see, learning to walk is scary. It takes a lot of courage to move off into space not knowing what’s there. Up until now Benjamin has figured out how to stand and could walk like a champ when holding your hand, but if you let go he would sit himself right down. But guess who got brave?
He’s just walking a few steps into our arms, but this is just the beginning! Soon there will be no stopping Ben.
We owe you guys so many posts. We’ll follow up this post with one telling you all about Ben’s travels (we even broke in his passport this weekend (ok, it was just Canada – but the French part!))