November 30, 2012


I am the kind of person that always thinks the best of people.  I find myself making excuses for why they might have acted in a not nice way.  But sometimes I come across someone that rubs me the wrong way.  After having a child with Down syndrome, those not so understanding ones really pop out at you.

When I pick monkey bear up, a group of adults mill about waiting for the doors to be unlocked.  I usually have rara in my arms and tend to keep to myself.  There is a grandmother there.  English is not her first language and she is a bit pushy. When she deems the weather is cold, she will come over and pull rara's sleeve over her fingers saying, "Oh she cold." The second time I met her, she told me what college all her kids had gone to and what amazing jobs they all had.

The other day was a half day and my buddy had no preschool so he came with me for parent pick up.  My buddy approached this grandmother and started smiling and chatting with her.  She asked me how old he was.  Then she said, with a very concerned look on her face, "He no talk?"  "No, not yet," with a smile on my face.  Then she said, "He born that way?"  I wasn't quite sure how to respond, but I really wanted the conversation to end so I just said, "Yes."  Ordinarily I would have mentioned the words Down syndrome and very positively said he will talk some day.  But with her, I just got the feeling it wouldn't matter.

On the flip side of that are the gems of people who are perfect around my buddy.  There is a receptionist at our doctor's office - we seem to be there a lot so they know us by name.  My buddy loves her.  He goes right up to her window, stands on his tippy toes until she opens it and chats her up.  She just talks right back as if he is having a real conversation with her.  The smile he gets on his face could melt any cold heart out there.

November 29, 2012

stepping it up

Lately I have been trying to take things up a notch with my buddy. It can be so easy to let time pass without challenging him to step out of his comfort zone. We have been working on dressing and undressing independently as well as potty training and walking (a little) in a store without running away.

I would love to say that he has risen to the occasion, but resisting would be a more accurate term. He stood in front of a full bubbly bath, really wanting to go in, with his pants halfway off refusing to finish the job. It can be really frustrating, but it can also be rewarding. When he actually gets himself dressed, he looks so proud and excited. For me, I feel the most important thing I can do for him is encourage him to care for himself independently.

Potty training is another story. My buddy is not to be trusted in the bathroom. How am I supposed to make that work? He is not too thrilled about trying and I really have not pushed that hard. I don't think he is able to tell me when he has to go and the thought of taking him into a public bathroom skeeves me out.

My buddy has gotten really good at working for a reward. I've been trying to get a picture for our Christmas card. He actually sat for several pictures when I told him he could play with the iPad for good behavior. I can see little glimpses of maturity and it makes me so excited. I can't wait to do big kid things with him. 

November 2, 2012


Some days I am bummed that my buddy doesn't anticipate much.  When a holiday is approaching, half the fun for me is getting excited at the good times that we are soon to have.  Monkey bear and I spent weeks talking about different Halloween costumes and while I wouldn't have chosen what she did, I appreciate her ability to make the holiday her own.  My buddy could care less about a costume and wasn't excited at all when we talked about Trick or Treating.  Although, when he is in the moment it is magical.  I guess we could all take some lessons on being present.

On Halloween, my buddy marched right up to every house, knocked on the door, stepped back to avoid getting hit by door and held out his bucket like a pro.  Before leaving he gave a hearty "aaa oooooo" while signing 'Thank You'.  I tried only one time to help him carry the candy bucket, but he was not letting go for anything.

Other days I appreciate the lack of anticipation.  Today we went to have his blood work done.  I like to tell him what is going to happen even though it doesn't seem to matter to him.  My buddy is fine until we sit in the big chair and the nurses swarm in to help me hold him down.  Then it could just break your heart with the "Mama" and tears streaming down his face.  But a few munchkins later he's moved past the trauma.

I will be glad when the long list of doctor's appointments that come with each of his birthdays is over.  Not a day goes by that I cease to be thankful that he is healthy.  While I anticipate how sick he will get from the germs, he is too busy enjoying  the feeling of his tongue on the bottom of his shoe to care.