April 23, 2010

only 2

Ever so often, I need to remind myself that monkey bear is only 2.  She is so responsible and well behaved that I tend to forget and expect too much of her.  The past couple of weeks I have noticed her trying to get more attention.

When my buddy was a baby, I made sure to say, "Mommy has to feed the baby and then I can ____".  I didn't want monkey bear to think that it was the baby mucking up the works.  But as he grows, I've stopped that and now it's more like, "My buddy is starting to fuss, we need to leave the playground."  Or, "My buddy has (insert therapy here) so we need to stay home this morning."

I can see her frustration and desire for special time with Mommy.  It's such a fine line to walk.  My buddy needs more of me - physically because he's still young, time wise to attend to all of his therapies and Dr appointments, and emotionally because he is entering into the zone of behavioral issues that need to be dealt with.  But I know that she needs me too.

I think I'll have to do the dishes while they sleep and carve out some snuggle time.

April 20, 2010

smile from the heart

Yesterday we went for a ride on a carousel.  Monkey bear decided that my buddy wanted to ride the elephant and she would be on the horse right next to him.  We paid the fare, strapped the kids onto their respective animals, and waited for the fun to start.

My buddy was squirming all around trying to escape.  No fear that he is 4 feet off the ground on a giant mammal.  Attempting a cowboy like dismount off one side while Mommy holds one with one hand trying to get a picture at the same time, I thought it was going to be a long ride.

Then the music started and we began to move.

I don't think I've seen a smile so big last for so long.  I swear it started in his toes and filled every cell in his whole body.  He could not get enough.  There is something in that smile.  No thoughts that someone may be looking, or perhaps you should "control yourself".  Just the feeling of pure joy written all over his face.

One dream I have for my buddy is that he never loses that smile. 

April 14, 2010

first dinner

Last night was the first dinner my buddy ate that I didn't have to grind something up.  We've been at this stand still for months and have made no progress as far as eating more solid food.  I was under the impression that he was physically unable to eat and swallow certain textures.  Turns out I was wrong.

We had a double team - OT and Speech Therapist - come over for lunch to see how my buddy was chewing and see if they could help.  I made a smorgasbord of food he usually spits out.  And wouldn't you know, my buddy was able to eat it all. 

Turns out he wanted a fork of his own.

What I thought was a physical issue turns out to be a behavioral issue.  There are certain foods he won't touch if you just put it on his tray and let him at it.  He'll simply put them in his mouth, spit them out, and throw any remaining food straight to the floor.  But put it in a bowl and help him stab at it with a fork... suddenly he eats.

Of course, you have to hold the bowl still so he doesn't toss that to the ground as well.  And those bowls with suction on the bottom are no match for his super-human strength. 

While we are on the subject of behavioral issues, I fear I may be in for it with my buddy.  When he gets frustrated, he started bumping his head on the ground.  And when he gets really upsets he "freaks out" - flailing his arms, forgetting to breath, turning purple, mouth wide open, and a crazed look in his eye.  I feel like 18 months is too young for that.

The hardest part of it all is I don't know how much I can expect of him.  When I tell him something, it's hard to tell if he is just ignoring me or truly doesn't understand.  I have high hopes for him and treat and speak to him like I would any other child, but I know that he is not "typical" and I can't expect him to be on target for all aspects of his development.

I guess for now all I can do is give the boy a fork.

April 12, 2010


I just need to mention the joy of walking.  My buddy is fast becoming a pro.  It has been the most surprisingly enjoyable milestone to date.  He no longer walks with his arms high in the air.  They now swing about waist level.  He has this really wide stance and a swagger as well.  My buddy looks like a munchkin cowboy.  For some reason it just cracks me up.

Today we went for a walk.  The first part was Mommy's exercise time - pushing a double stroller.  Then as we rounded the corner to the portion of the path that goes nice and flat by the pond, the kids got out.  Monkey bear ran ahead and would shout, "I am so far away!" then run back to us.  My buddy swaggered along thrilled with the freedom.  He actually listened when I asked him to stay on the path.  There were a few stumbles, but no major falls.  My buddy walked farther than I could imagine and his cheeks were rosy from the exertion.

It was pure bliss. 

While I am on the topic of joy, can I just say how fun it is to watch your kids play together?  Monkey bear is the most patient 2 year old I have ever seen.  She will build a tower and just laugh when my buddy comes barreling through.  She turns toys on for him and gets him things he can't reach.  She always shares her snacks and tells him, "I love you my buddy". 

And the smile he gets on his face when she enters the room.  Forget Mommy and Daddy, all he wants is his monkey bear.

April 6, 2010


I realized lately, that there are hours... even days when the words "my son had Down syndrome" don't even cross my mind.  I think the biggest impact is the fact that he is walking.  Our physical therapy is lots of walking and he does that all on his own.  No more setting aside time and the guilt of missing a day.  Just yesterday, I let him out of the stroller and let him walk around the waiting room of the eye doctor's.

Of course my buddy wants to walk where he wants to and refuses to hold my hand.  If I stop him from going a certain way, he plops down, makes an unpleasant noise, and signs "no".  I'm sure that stubborn streak will haunt me.

My buddy seems just like any other soon-to-be 18 month old kid.  He laughs, plays, walks, interacts with kids, waves "hello" to everyone, cries, hugs, communicates, and loves.  He is fun to be around and keeps me on my toes.  I was writing in his baby book today and he knows 16 different signs.  He gets his point across and that is all that matters.

I used to search for the silver lining in all of this.  I think the silver lining is my buddy.  As the days pass, it gets easier and easier and so much more fun.  I am excited to see who he turns out to be.