Belonging

Have you been wondering how school (Daycare - but don't tell Nate) is going???

Well it's been going great!! Our month long transition into Winston Prouty was worth every minute. The school community is pretty awesome. Nate is in a very diverse class with some pretty cute 15 month to 2 year old kiddos. His teachers are incredibly caring and supportive. They are also quite skilled in what they do. They participate in regular professional development and believe that all students in their program are unique and special little beings. So true.
Here is more info about the program (pretty cool - right?):
http://www.winstonprouty.org/early_learning_center.htm


Now that we're here....2 weeks into it, I can say that we are feeling like this is right for Nate. Truthfully I don't think we could find another daycare situation quite like this. Nate's interventionists work right there in the school. They can provide intervention right in his classroom and model strategies for his teachers to use. It doesn't mean that all is perfect every day...We still find ourselves needing to advocate for Nate - or even just speak up when things don't seem to be handled appropriately for him. For example this week, a 16 month developmental questionnaire came home for us to fill out. Out of about 50 things listed on the questionnaire, Nate could do about two of the listed developmental skills. A big oops on their part. However, they are always ready to listen to our concerns, respect our knowledge of Nate, and support our goals for him.

What really is exciting is that Nate is becoming a part of an inclusive classroom community. Nate's new friends want to play games with him, want to pull him around in the wagon - grab his glasses off his face. When Nate arrives in the morning, they all hurry over to the classroom entrance calling out his name. I am not sure he gets their excitement -It probably means more to us at this moment than Nate. But our hope is that someday he will be able to understand that his classmates like him and care that he's a part of their day. That his presence in is important -- That they would notice if he wasn't there.

What more could we ask for. Isn't that what a lot of us want? To belong?

Thank you Winston Prouty - You are a pretty special place!

Ch-ch-changes.....

So after the 30th person asked us how old our little girl was, we decided it was time to get Nate's hair cut..... (Nate and his "new look" below)


Speaking of changes......after many drippy sippy cup drinks, Eric decided to try a straw cup with Nate.

And guess what??!!

He LOVED it!!!! Nate's great with a straw! No more sippy cups for Bean!! Wahoo!!

Finding pace...

Sitting back and reflecting, I am struck at how positively rushed our life feels right now. I have to say this pace is very unsettling. Our transitions (Nate to school and mine to work) have felt hard to say the least. We all miss those summer days when we had no idea of the time or day. We were spontaneous and just living in the moment, letting Nate be our guide. Now it feels like we carry the weight of some superimposed granite clock in our days, counting minutes, following calendars, and attempting to check things off an endless to-do list. I just have to note that as I write this I am hearing "the ants go marching one by one, hurrah, hurrah" in my head (lack of sleep? or my delirium from our crazed week?) . And even though I know we know that we are not the only ones who feel this way, I am still finding myself feeling so resentful and angry that this is the way we are living our life. Where's the peace in this pace? (yea say that ten times!).

And then there's Nate, a guy who definitely moves at his own pace. Eric and I have felt so conflicted about these changes in our lives. Should I have stayed home longer with Nate? Although we know there are many benefits to Nate starting preschool/day care, we also wonder if he would be better at home a little longer. Unless Nate has a corner to himself, preschool is a pretty hostile environment for our Bean. In his class of 9 children, Nate is the only one who isn't mobile at all. Not only is he having to get used to all the sounds that other little ones are making (talking, crying to screaming), he also has limited ways to defend himself when other kids come into his space and touch him. Nate can't crawl or walk away, he can cry and that's about it. His mobility issues also impact his play. He needs to get "placed" in play situations when other kiddos can move in and out of play choices. I know there are many benefits to preschool too- don't get me wrong. I just wonder if Nate would get more out of preschool if he were mobile. I have to tell you if there's one thing we've learned from other families about Down syndrome, it is that Down syndrome children learn to do all the same things that other kids do, but just at their own pace.

So I feel conflicted. Is it better to let Nate be the guide? Or is it better to have him in preschool, a place which may be a more challenging environment for him?

Packing and Unpacking

Packing.........

It is hard to believe that this is the last weekend of a truly wonderful summer with Bean. Our summer began with me packing up my corner of the Learning Lab in Conway and saying goodbye to the many good friends I made there along the way. In June I accepted the position of special educator in my K-8 hometown school. No longer will I be 40 to 45 minutes away from my dear Bean; my new school is only a mere 8 minutes from my house. It is also only about a 15 minute drive to Nate's school/daycare that he'll be attending in the fall. Such a serendipitous blessing for us all!

We also packed our suitcases for two wonderful summer vacations - One to Maine and the other to my hometown in Baltimore, MD. Nate got to share precious time with his grandparents and uncles. He also spent time with great aunts and uncles, cousins, and his great- grandma. We visited many friends and even found time for a trip to the zoo! Though I have to say that Nate, as a "puller" and "grabber" these days, was more interested in the plants and bushes he could reach out to while in his stroller than the animals.

In August, we packed up our towels and sunscreen and headed to a town pool with our local gang (Mommies and toddlers). It was a first for Nate! We lathered him up in sunscreen, put on shirt and hat, packed up our toys and towels and enjoyed playing in the pool on a hot summer day. I think we stayed in the water for over 2 hours. It was heavenly for us both.

This summer we also packed up Nate's portable high chair and headed out to meet several new families who have little ones with Down syndrome. We hope to find a way to create a playgroup with these boys who are so close in age. In addition to meeting new friends, we so enjoyed seeing our old friends - R-man in Bratt and big boy P all the way up from DC.

And there was unpacking too......

So starts a season of many big transitions for us all. Unpacking also represents change and new beginnings. My heart sinks when I think about it. It's all good, but new. I start working full-time again (and sadly have to say good-bye to my days with Nate), Eric is home with Bean for the month of September, and Nate begins the transition to preschool. Lots of unpacking, shifting, and settling into new routines.

Speaking of transitions (and unpacking), we think Nate is on the verge of another milestone. Usually right before something big changes for him, we see a bit of regression and plateauing of skills. Perhaps putting together some new skill takes all of his focus -- he's working so hard at one thing, other skills lose priority for him. Because motor skills in general are so challenging for Nate, we've come to really appreciate all that goes into a motor milestone. I watch toddlers move effortlessly from sitting, to side lying, to squirming on the floor. It's fluid and so natural for them. Yet for Nate, we have to break-down the skill into all the prerequisite steps that go into the action. So we practice helping him move to side-lying when transitioning to a sitting position. We provide hip support to work his mid section muscles. We also continue to work on strengthening his upper body so that he can use his arms to support his body. For Nate, this work is hard. I don't mean a little hard, but red-cheek-heart racing hard. A real workout. Essentially we have to unpack all these developmental milestones for him. Luckily, the wonderful book, "Gross Motor Skills in Children with Down Syndrome, A Guide for Parents and Professionals," by Patricia C. Winders does a lot of the work for us. Thank you!

So yes, lots of packing and unpacking this summer. So many new experiences for all of us...

And now for some pictures.......

Pushing up is getting easier ; )

Quadruped --- Not a favorite position to be placed in...

At the pool....Ahhhhhhhhh

Happy visiting his Richmond cousins! Bye bye!

Our 1 year well visit...

went well! I again was asked to educate a medical student about Nate and his Down syndrome. I am of course happy to do this, however, sometimes I would like us to just have a regular visit with our doc. Our doc always asks me to point out all of Nate's physical characteristics that are related to DS. I kind of go into automatic pilot now when I do this. Maybe it bugs me because I want the visit to really be about Nate...not just his Down syndrome. Does that make sense?

Anywho, here are his current stats:

Weight: 21.1 lbs
Height: 29 1/2 in.
Head Circumference: 45 cm

Yes, thank goodness, our Bean continues to be healthy. Our big issues now are with his swallowing and possible reflux. Today we meet with the nutritionist and will introduce "thick-it." Thick-it will hopefully help Nate be able to better swallow water. We also got a prescription for a reflux med, Ranitidine, to try. Nate does need to get his hearing tested again, but we have decided to wait and have that done at our next trip to Beantown and BCH.

AND of course we need to give a glasses update! Nate can now keep them on for 10-15 minutes at a time! We actually think he likes them!

I wonder what his world looks like now.........

Nate's new glasses!

Nate's glasses finally came in yesterday. I think the verdict is still out on them. Unfortunately we don't think they fit him very well. Not only is he still a peanut, his ears are lower set and the bridge of his nose isn't as defined. There are wonderful glasses for kiddos with DS, but they don't have sizes small enough for little ones like Nate-Bean. Right now we're just working on keeping them on!

A week ago yesterday....

Our little boy turned one!

There is so much to say about our year with him. It's interesting to us that although we of course loved him dearly since the day he was born (well truthfully conceived!), he felt a little bit like a stranger to us. In the past year his personality has started to reveal itself. Nate Bean is clearly a little person with his own place in our family. He is curious, busy, funny, and just so musical. He loves his yo-baby yogurt but detests spinach and potatoes. Sometimes before he falls asleep, Nate gets super silly and can end up in a fit of giggles. Favorite toys include butterfly, dad's nose, the big white spoon and of course the mirror. He's a talker too --- Dadadadada and some new monkey noises too!

We can't imagine our days without our sweet Bean.
We love you Nate!