One time at blind camp….

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…

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Bedtime for Benjamin

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.

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Old Mc Benjamin went to a Farm

ei-ei-o

One of the workshops that Joe and I attended at the Perkins Early Connections Conference involved the idea of concept building. Concept building is important for all children, but needs to be done more explicitly for those with visual impairments.

For example, a sighted child getting a cup of milk sees the parent go the refrigerator, get the milk, get a cup, pour the milk into the cup and bring the cup to them. They also see the cow-print or farm scene on the milk carton. On the other hand, Ben gets a cup of milk magically appear in front of him. We have to tell him where we keep the milk, how we pour it into the cup and where milk comes from. As we don’t have a cow in our apartment, we have to make do with apps such as Sound Touch that have realistic animal sounds (Sound Touch also has instruments, automobiles, and household objects) and plastic models of the cow. Anyone who has ever seen a cow knows that a plastic model, though visually like a cow, is a far cry from the actual animal.

So our first trip to a farm was exciting- seeing real animals! This is the first step for Ben to understand what they feel like, sound like, and smell like before understanding that sometimes, um, we eat them too. We are planning on visiting Queens Zoo and Queens Farm, NY Aquarium the Bronx Zoo as well this summer and fall, so hopefully we’ll have a lot of opportunities to have a variety of real world experiences.

It was also a lovely day to spend with Aunt Chrissie and Kaia, who were up from North Carolina, and see Gram and ACA! We all had a great time!

Boy and his aunt walk in a greenhouse

Little boy reaching out towards a goattwo toddlers with two adults touching a cow Little boy petting a sheep

A Boy and His Cane

Ben tries out his cane

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!

Infantile Spasm Update

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.

bro ben

If Ben has a dirty baseball cap he would look like a Hobart bro

Benjamin’s Adventures

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.

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Benjamin did great on the plane, but wants to go first class next time

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There was always lots going on in Jackson Square

Ben on steps

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 on the slide

Ben loved the slide

Ben and Clavin hugs

Ben got lots of love from his buddies in OBX

ben in chair

This chair is enormous – but Ben is still small

Ben on swing

Swings are almost as fun as slides

playdoh

Jack and Ben play with Play Doh

Then Ben got his very first haircut (that was not done by a nurse)

ben haircut

A little off the top, Carlos.

Ben got in his first 2013 Mets game (they won)

Ben at MEts Game

Let’s go Mets!

Then just last weekend took a quick roadtrip to Montreal for some yummy food.

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Canada is a little chilly

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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)