A Good New Year

Aleck pulling leaves


It’s been an incredible month and a half around here and as always we’ve been so busy that blogging has really been put on the back burner.  After all, we must make a great effort to get to the park as much as possible even after a long day of therapy sessions.  Especially since someone talks about going to park non-stop.  We go to a park that’s a long walk or short drive from us and if we go late in the afternoon Craig can meet us there from the train and we all go home together.  It’s that kind of Norman Rockwell family stuff that we all strive for, at least once in awhile, this calm everyday family activity that keeps me going through the 4:00pm crash.  And now being at the park is a million times better than before with Aleck running around in his walker.  This piece of equipment that I was hesitant about at one point is now the center of our universe and the vehicle through which Aleck is finally able to explore the world around him.  His first time being in it at the park he got stuck in bush and was perfectly content to simply stand there and pull the leaves off the branches.  It was the first time he’d ever pulled leaves off of anything.  I finally pulled him out of there so he’d be more social, especially since we had a playdate with my girlfriend and her son.  He’s taken his walker under the water features at the park, slowly circling them and getting used to the spray on a hot day working his way up until he’s completely under the water and it’s beating down so hard on his head his eyes are squinting and his whole body was tense with anticipation of the water.  After a minute I pulled him out of there too.

Months ago I spoke about the Go Baby mobility program through the University of Delaware and how they are adapting electric cars for kids with special needs so they can explore the world around them.  Well, a couple of weeks ago there was a great article about this in the New York Times:  http://www.nytimes.com/2013/09/08/automobiles/giving-mobility-when-legs-cant.html?_r=0  Mainly the article talks about how electric wheelchairs aren’t available to kids until they are at school age so they spend a majority of their time in a stroller or in their parents’ arms and therefore don’t have the opportunity to explore the world around them, to pull leaves off a bush, and to socialize with other kids without their parents holding onto them.  I’ve always understood the purpose of these cars, I’ve recited the idea behind why these kids need them to play on the playground, and I myself grew very weary of only being able to push Aleck on a swing or bringing him into a jungle gym myself, sitting next to him while we watched the other kids running by us and giving me a funny look since I was the only parent camped out on the play equipment.  This walker is a game changer and it wasn’t until we started using it on the playground that I realized for myself how much more Aleck can do, how much more independance he has, and how much he can explore on his own.  Little kids come up to him, sometimes they want to help push him, they pour water on his arm on a hot day, compare sneakers, and he even chased a little friend he had made all the way up the ramp onto the top of the jungle gym (with a little help of course).  We literally can’t go to the park without it.

On the other hand it’s interesting being on the playground with Aleck in his walker, everyone knows who we are, there’s no going to play and blending into the background with this thing and people’s reaction vary tremendously.  Hispanic families sitting on benches will give Aleck huge smiles, which he returns, as he circles by them carefully avoiding their feet.  In Palmer Square park a lot of the yuppie/hipster families will ignore us completely even though they see us there as the parents all stand around together talking while their kids are playing.  Even though the walker gives Aleck a lot more freedom he’s still learning to maneuver it and gets stuck while trying to go play on the grass or get closer to a see saw, so I don’t leave much distance between the two of us and therefore am not a part of the group of parents talking.  You can hear the little kids asking their parents why Aleck has his walker, and you can hear the parents explaining how he’s learning to walk in it and needs some extra help.  So far the parents do a good job of explaining and sometimes the kids even express their jealously in Aleck’s special toy, they want one too.  Some kids are afraid of Aleck and avoid him completely, some kids want to get their hands on him and his walker in a fun and playful way.  Either way Aleck is learning to socialize with other kids without his mommy stuck to his side and he’s loving every minute of it.

Eating is getting a lot better in our house as well.  We got rid of the second bottle of the day and have switched to milk in the sippy cup.  He’s not drinking the equivalent in milk by any means, but he’s also not throwing up nearly as much.  Lately we’ve had almost 2 weeks without any vomiting and that’s the longest stretch we’ve gone since right after the surgery.  Unfortunately last week he caught a stomach bug and was puking his guts out, but as he started to feel better he was asking for more of his food, asking for his milk, and even requesting more yogurt.  Being able to communicate better with him is playing a huge role in making feeding more enjoyable for everyone.  He can tell us if he’s hungry, if he’s full, if he wants yogurt when he doesn’t want to eat anything else, and we are able to introduce him to more and more foods.  It’s as if his appetite is on a growth spurt and it’s alleviating a lot my mealtime anxiety.  We are trying as much as we can to all eat together, have a wide variety of things for him to try, and make eating into a fun time we share as a family.  When it works it’s pretty cool, of course it doesn’t always work.

In the meantime my dream job opened up and thanks to my neighbor I’m on the longest paid interview ever, an eight week contract which at the end of it, if all goes well, I’ll be offered a full time job.  This all came up really fast and they started me right away so we’ve been scrambling for childcare for Aleck.  So far he’s been doing pretty well but he’s crying and complaining a lot more, both when I kiss him goodbye and when I see him again at the end of a long day.  Our main focus right now is to find a part time nanny to finish this 8 week trial period with us and then reevaluate.  The hard part is that Aleck is still at such a critical point with his therapies and development that part of me wishes I had another year.  However, another part of me is just loving being away from my home everyday, interacting with a studio full of adults, and then feeling that longing at the end of the day, looking forward to planting kisses all over his sweet cheeks.  We still have major issues to work out like whether or not to use Botox on his triceps to activate his biceps, getting him interested in self feeding, casting him for his new Batsuit, and getting him up on his feet, everyday, multiple times a day.  These issues are all being worked on with our terrific team and none of this is going to slide, but there may be some reevaluating to do after this trial is over.  A terrific nanny could be very helpful but no one is going to be more motivated to motivate Aleck than his parents so we shall see how it all plays out.

6 Replies to “A Good New Year”

  1. So enjoyable to read your update.
    I can easily visualize Aleck moving
    , socializing on the playground, enlightening a
    crowd of kids n parents.
    I want to be his nanny…..:(

  2. Melanie, it was so great having you spend a day with Aleck. I loved watching you and my mom dote over him at the park. And what a great day that was for me, I’m loving my “interview”. Hope to see you again soon.

  3. Lynnie, so glad to read the recent update with news of all the progress being made by all of you. Look forward to reading more in the future. Good luck with your job opportunity and childcare search.

  4. How wonderful to read Aleck is out-and-about on his own. 🙂 I can remember a few months ago when I finally felt it was safe for Philip to touch things outside without getting horribly sick. Holding him up to a tree to pull the leaves off meant the world to me. So, congratulations to you and your wonderful family! xoxo

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