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

The location of Benjamin’s nose

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.

Guess who’s walking!

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?

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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!))

Baby no more: Birthday Boy Benjamin

It’s Benjamin’s birthday today! I remember right after Ben was born and things were moment by moment, when we watched for the clock to hit 1:04 the next day so we could celebrate 24 hours – thinking about two years was so far from our thoughts that finding ourselves here already is disorienting.

To be honest, last year it felt a little strange on Ben’s birthday celebrating the anniversary of our scariest day ever. Yes- we were celebrating the whole year since he was born, but February 7 2011 was a rough rough day (Again so much thanks to Carol for her amazingness). But this year it feels so much better. It’s 100% celebration this year!

Ben will be spending the weekend with us and family and friends to celebrate his special day (if the blizzard holds off long enough) but we were able to do a little birthday-ing tonight. Here is some super cute evidence of our two(!) year old.

Benjamin plays with his new abacus

Birthday Present: Abacus! Best. Toy. Ever.

Ben sits at his new table

A table for me? You shouldn’t have!

Ben sits on a rocking chair and looks down at the stuffed bear on his lap

Remember when you were bigger than me?

Ben and his stuffed bear sit laughing on a chair.

That’s hilarious.

Ben sits at his table and feels a basket of felt fruit from Ikea.

Fake fruit. Interesting choice for a present…

The same but different

Once upon a time, in June 2011, before Benjamin’s fungal infection made itself fully apparent, we were under the impression that he would be coming home soon. So with that in mind, my amazing family and friends threw me an awesome baby shower. The weird thing about having a baby shower when you have a preemie is that all of the cute little baby things look… huge. To keep this in proper perspective, in June 2011 Ben weighed less than 5.5lbs and was still wearing preemie clothes. So when I opened up clothes that were larger versions of preemie clothes he owned, I cracked up. I’m pretty sure everyone who was there thought I was either crazy or had had one too many cocktails. Thankfully, when Joe came home from the hospital later that evening and we sorted through our gifts, he found the giant versions of preemie clothes as funny- if not funnier- than I did.

Now, a year and a half and 16 pounds later, Benjamin can just fit into those 18 month versions of his preemie clothes. (Ben weighs over 21lbs right now- holy growth spurt batman!)

Smiling Benjamin laying on a white blanket

Growing slowly, but growing all the same.

Preemie Benjamin in hospital on cpap

This photo was taken in May of 2011 and Ben weighed 3.3lbs.

Slow progress – but there are zebras to laugh at

Look! The third post this week! I know! “But Joe, you didn’t write like… forever, and now you are writing all the time.” Yeah, yeah, I know that too. It might not last, I won’t lie, but I told myself I wanted to make an effort to write more and you lucky(?) folks are the beneficiaries(?) of that.

And why haven’t I been writing? Well, the blog is called “All About Benjamin” and to be honest, over the last few months telling you all about Benjamin might have been a bit boring for you and a bit depressing for me. No, nothing bad has been happening with him. Outside of a couple of colds, Ben has been doing well. But his developmental progress has been so slow there is not much to tell you. I get worried about it, and a little sad and it didn’t sound like something fun to write about (though here we are).

When we first started the blog we used it to share the day-to-day and sometimes hour-to-hour updates and a bit of a pressure valve where we could write all the scary medical stuff down and give ourselves a little distance from it. But mostly it has been a place to share Ben’s successes (and cute photos). Maybe it’s ok not to feel like we always need to be cheerleaders with good news and talk about other stuff too (but of course still post cute photos of Ben).

So first things – on the development side, here are the facts… Ben is still not crawling really, or walking without holding on – but he can pull himself up onto things and cruise like a champ. Ben doesn’t have any words yet, but babbles and laughs (a lot). Ben can’t handle food any more solid than a puree (and some days that is too much for him too) but he is so much better with milk and can drink it out of sippy cups. Ben thinks zebras are very funny.


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Ok I know even here, when I said I wouldn’t feel the need to always cheerlead, I am putting happy spins on everything. There is obviously progress and Ben is an amazing little guy. I’m just frustrated. I want to see Ben doing the things the other kids his age are  doing. I want to know that he can talk and walk rather than just hoping he will.

And before you say it – I know, I know I know. I know we are super lucky to even be where we are today. I know Ben has a lot of challenges to overcome and that he’s doing great. It won’t stop me from wanting more though…

Happy New Year – Where’s Ben been?

It has been forever since we’ve posted last. And look! it’s a new year – Christmas has come and gone, and Benjamin is quickly approaching his second birthday. What has Ben been up to? Let’s see:

  • Ben got better at eating (but still a pain in the ass)

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  • Ben visited some old friends at CHONY (but slept through the whole thing… sorry Dany, Amy and Leora!)

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  • Ben got to meet Santa (but was more interested in feeling the candy bag)

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  • Ben got way too many Christmas presents

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  • Ben hung out with family

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  • And friends

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  • And had a lot of fun

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  • And Ben finally hit 20 pounds! (just today actually)

Anyway, happy new year – and I hope to post more frequently in the coming weeks.