December 20, 2016


The holidays are so much fun yet so stressful at the same time. The kids love all the traditions - getting the tree, decorating it, seeing Santa and driving around looking at Christmas lights. They all really love to give gifts. My buddy's favorite time of the year is when he walks all around school handing out his holiday thank you cards and gifts.

The stress of the holidays is not to be denied. For my buddy, the most stressful thing is the big family holiday party. I try and talk about the good and the bad parts of raising a child with special needs with extra stress on the good. I don't like admitting there are things that my buddy just can't handle but big gatherings are so hard for him.

This year, despite the hurt feelings it will cause, we decided to do what is best for our family and skip the big party. My job is to make sure my family is safe and happy. Even big sis ends up with a tummy ache every time we go to a big gathering... the curse of an introvert. I wish things could be different. Usually it's just our immediate family that has to live our life based on what my buddy can handle. It's hard as a mom who is desperately trying to change how the world sees my son, to have to spell out his shortcomings and ask point blank to have his needs taken into consideration.

This year we start new traditions and selfishly do what makes our family happy. This is our one life and we are choosing us.

December 13, 2016


I've often said how grateful I am that my buddy has a disability that is right there in his DNA. We don't have to prove anything in order to get the services he needs and people can look at him and not expect him to be like every other kid.

It makes some things easier - like when a couple of kids build a huge tower out of foam blocks and my buddy body slams it before I can stop him - the dad isn't mad. Of course my buddy has to apologize and see if they want help fixing what he ruined. The kids are still pissed but the dad can see my buddy's disability all over his face and I am relieved not to have him be angry with me.

Or when my buddy goes right up to the two skateboarding dudes and stands right between them. They can't understand anything he says, but they are so patient with him.

It also makes some things harder. The lower expectations make it harder to live up to your potential. I want my buddy to be a shining example of what a child with Down syndrome can be when we are out. I want people to see how funny he is and how loved. My buddy is rarely at his best in public. More often than not, he is growling at me or shouting 'NO'.

Then I get 'the look'. Man how I hate that look. Sometimes it's pity. Other times relief that he's not their kid. It's the one time I am grateful I can't read people's minds. I know I can't make everyone fall in love with my buddy and I can't single handedly change how everyone perceives people with Down syndrome. I just hope that somewhere along the way, my buddy can win over a heart or two.