Sunday, October 2, 2011

31 for 21 -- Response to a question (Day #2)

Fish heads fish heads, Roly poly fish heads, Fish heads fish heads, Eat them up yum! Where does the head go?

Ta da... wait, something's not quite right...

That's better.
(photos taken at the Bay Area Discovery Museum in Sausalito, CA)

This boy seriously LOVES train sets!

I'm posting here and on facebook my daily 31 for 21 posts;, that is, 31 days throughout October, which is Down Syndrome Awareness Month, posting about Trisomy 21 (T21), aka Down syndrome.

Here's my response to Gretchen's question (she responded to the previous post...):

Gretchen: Awesome. Can't wait to read! I'll start with a question. What is one of the most challenging things raising john michael so far in terms of his development? Id like to know his skills and then one thing you find difficult.

Monica: Thanks for asking... Raising JM (as w/ any kid) has its rewards (more of these) and challenges... It changes as he ages... I used to be challenged by his lack of verbal communication and now he is a chatter box and talks all the time (although still in 2 and 3 word sentences, but we're working on it). Currently, it's behavior. He bolts any chance he can... it's very hard to take him and Luke anywhere unless they're strapped down in a stroller. JM will find an opening and escape. I guess he loves the adventure and freedom and lacks that sense of danger. He also will bonk his little brother or Greta in the head with a toy if he's higher than them (he's standing, they're sitting...) Poor Luke! He's also the most stubborn individual I"ve ever met, but I'm the parent and my will is stronger and we'll get through it. So, yes, challenges... but not unlike some other kids. He does have pretty good attention span and can play with Legos or at the train table or outside play kitchen for a long time. He's also very good at school according to his teachers. Developmentally, I wish he could express his deepest feelings to me... I find that the most heartbreaking right now. Skill-wise, he's jumping with both feet a couple inches (yay!) and can do wooden puzzles with pictures with ease. He recognizes basic colors and shapes and is working on letters. He eats with utensils, has good manners, says prayers (usually) and brings each family a rosary on Sunday nights. He pushes his chair in and cleans his plate into the garbage. Tries to make his bed (does pretty well...) and he loves to teach Luke new things.


  1. Loved reading this. Your blog and reading everything about JM has helped me so much along the way in my own journey with Russell.

    Is there one thing you use to worry about or stress over concerning JM that you wish you hadn't wasted time on? Like something that seemed like a big deal but in the end really wasn't? Haha, I'm having a hard time describing what I am trying to ask....Anyway, if you understand that jumbled question feel free to answer or not! lol

  2. Great post Monica! I'm so glad to read your post because it's so honest and true. It's great to meet people like you who don't gloss over anything when it comes to raising our special ones. I am looking forward to learning more about JM. He seems like a great little boy. =)

  3. right there with you!!! dealing with the same things with henry...

  4. I agree, william is a runner too, however he has got a little (and I mean a little) better since school has started.
    We have major talks before we get out at the park, store, etc and I tell him he is not to run off and needs to stay close by....that seems to just have started working so lets hope it continues:)

  5. Such a great post! I'm worried about Sutter and his lack of fear and ability to escape! He is already trying to unlock and open the front door...he's mastered the screen door and now it has to be locked at all times. I was thinking a leash with an 8ft line - just kidding, but in all honesty I do worry about keeping him safe when it comes to his ability to get away and his want/need to be outside!

    JM is such an inspiration for us, he's doing amazing!