February 21, 2012


When you have a baby with Down syndrome, you are automatically welcomed in to this amazing community of people.  There is a ton of support and families more than happy to answer any question you may have.  As my buddy has grown, I've noticed there are some pretty polarizing topics within the community.  I'm still forming my opinions but there are some views I have that I'm sure many others don't agree with.

My buddy is different from other kids.  Sure he's just a child learning how to make his way in this world and he does things that every other kid out there does.  I've had a hard time putting into words how he is different.  I think the only way to describe it is most typical kids have a certain order that they reach each milestone.  My buddy reaches milestones haphazardly.  He'll reach a physical one right on target while a cognitive milestone will be months to come, for example.

This haphazardness coupled with the huge lack of impulse control can lead to safety issues.  My buddy at the age of 3 has to be locked into his room every night.  His room only has a mattress on the floor, a dresser bolted to the wall with drawer locks and no knobs, and a few soft toys.  My buddy gets locked in there while I shower as well because it's not safe to have him in the rest of the house unsupervised.  We have many years ahead of us before he can walk along with me in the grocery store or play in the yard without me right there. 

Even though my buddy is different it is OK with me.  I don't feel like I need to pretend he is something that he is not.  Just like it is OK that monkey bear is super shy and won't talk to her peers.  It's all a part of who they are.

I have mixed emotions about inclusion.  I love the fact that my buddy is lucky enough to be included at school and given the opportunity to make friends with lots of different people.  I just don't think I believe in inclusion at all costs.  I wouldn't expect monkey bear to be in Advanced Algebra if she wasn't able to understand the concepts and learn.  I would find a math class that was more appropriate for her ability.  If my buddy understands Algebra and enjoys it then all the more power to him. But if being in a special ed class that teaches him how to balance a checkbook is more appropriate than so be it.  Whatever his ability may be is fine with me. 

Let's face it.  We all make friends with people who are like us.  I don't have friends who are Harvard educated rocket scientists nor do I have friends who are intellectually disabled.  I want my buddy to make lifelong friends with anyone that appreciates who he is.

I think the most important thing we can do for all our children is to encourage them to push themselves and be the best they can be while honestly accepting who they are.

February 1, 2012

food wars

My buddy is slowly making me insane.  I mean that in the best possible way.  Most of the day is filled with hugs and laughter, but each mealtime is filled with drama and stress.

A typical meal lately goes something like this:  I put food on the table.  My buddy throws himself down in a full blown temper tantrum.  Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.

Since my buddy is in school now I just can't bring myself to send him in with an empty belly.  So now come the theatrics... from me.  I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth. 

So the food is on the table.  It is food that my buddy approves of yet he is complaining full force.  If you just plop him at the table in this state, the food is guaranteed to fly across the room.  So Mommy heads over to iTunes to put on the one song that will stop the crying:  Three Little Birds by Bob Marley.  (Or Bobby Marley if your name is monkey bear)  If it is a mild meltdown, then the song alone may be good enough.  If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first. 

The smile he gives is almost worth the strain on my back and pregnant belly.  The next move is either straight to his chair.  Or on those really bad days, he sits on my lap.  Never put the food within reach until you have completely assessed the mood.  One must slyly nudge the milk close and if that goes well then introduce the food. 

The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing.  I am embarrassed that I fall for it every time.  But I hate the cracker diet in front of the TV and that seems to be the alternative.  I've tried feeding him nothing and then sometime later give him the same food.  It's never gone well.

I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food.  A girl can dream...