Tuesday, September 28, 2010

Let's do the walk ... The Buddy Walk

Every year we participate in our local Buddy Walk ... an event that promotes acceptance and inclusion of people with Down syndrome. I love this event, for obvious reasons ... but it also gives me a sense of peace.  It is a place that we belong. It is a place that brings no prejudice or criticism.

It is a place that we can be without feeling like maybe we do not fit in.


This past weekend was our walk ... but first, I have to say that my girls were both chosen to be in the NDSS Times Square slide show for the NYC Buddy Walk. I was so sad that we could not be there to see their pictures up on the big screen, but so thankful to a friend that was able to get pictures for me ...



I may be baised, but how awesome is that?! So proud of both of them ... ahh, love them!

Moving on to our walk ... err, ride ...


We have such an awesome support system around us ... and I hope that every one of those people know how much their continued support means to us. 

Having a children with Down syndrome is not something that requires support only at the time of diagnosis. We continue to have struggles throughout their lives and we continue to need support. Knowing that we have that is something that means so very much to us.

Our team ... Two Girls Tribe!


Our team raised over $4,000 this year ... so excited we can keep up this momentum from year to year! I hope everyone understands the importance of these funds for our local Down syndrome organization.


Haha ... this picture cracks me up ...


It is the freakin papparazzi! A friend of mine that was walking ahead of us took that shot ... love it!

The kids always have such a great time at the Buddy Walk. Once the walk is over, there is so much for them to do ...









A few weeks ago, my cousin gave birth to premature twin girls ... and their first outing was our Buddy Walk! Did I mention we have a great support system? Honestly ... it meant so much to us to have them there ... girls, next year you can play!



So ... about those Disney princesses ...

Note to self: from the mom of a 6 year old boy and two tomboy girls (aka: me) ... the pink princess is Sleeping Beauty and the blue princess is Cinderella. Oops. 


Okay, okay ... so I did know Cinderella wears a blue dress. I just got a little confused and since Payton doesn't know the difference, I just refer to everyone as Cinderella since that is who she knows the most. "Ella!" she says.

Second note to self: do not call Sleeping Beauty "Cinderella".  


Tuesday, September 21, 2010

Raising Your Other Children: Siblings of a Child with Special Needs

I think one of the many difficult things in having a child ... or, ahem, children ... with special needs is appropriately discussing their differences with their siblings. I remember wondering, "When is the right time to discuss Down syndrome with Mason?" I mean, we have always just talked openly about how the girls learn slower than he does, but as far as really getting to the core of the subject ... well, I just wasn't sure how to approach it.


So then, one day ... I just asked him, "Mason, do you know what Down syndrome is? Do you know that both of the girls have Down syndrome?" I was all feeling empowered, like we were going to have this big heart to heart ... and quite frankly, he could have cared less ... he was mostly interested in knowing when he could get back to his video game. This really was a lesson to me that it really doesn't matter what it is called ... he still loves his sisters the same. We still talk about it openly and I guess he will ask more questions when he is ready.

Last year I attended a conference in which I was able to hear Dr. Brian Skotko do a sibling workshop. I just came across this list of great tips to remember when dealing with siblings of a child with special needs, as written by Sue Levine and Dr. Skotko ...

1. Be open and honest, explaining Down syndrome as early as
possible. Encourage other children to ask questions; answer them on
their level as honestly as possible. But don’t wait for siblings to ask
questions. Bring up the topic routinely in conversation.

2. Allow brothers and sisters to express negative feelings.
Acknowledge the fact that sometimes it is hard to be a brother or sister to
someone with a disability And don’t expect siblings to be saints.

3. Recognize the difficult moments that brothers and sisters may be
experiencing. As brothers and sisters grow up, they often begin to
realize that not everyone in society shares their family’s beliefs and
values. Recognize situations that may be potentially embarrassing or
stressful and do what you can to help minimize the difficulty.

4. Limit caregiving responsibilities. Children need to be children. Allow
them to be brothers and sisters, rather than becoming an extra parent.
Your children with disabilities also benefit from having siblings rather than
a family full of parents.

5. Recognize the individuality and uniqueness of each child in the
family. Be sure to point out what makes your children special; they want
to know that you notice them, too. Celebrate their accomplishments and
schedule special time with each of your children.

6. Be fair. Listen to both sides of the story and be certain to make sure
each child has responsibilities appropriate to their level of ability

7. Take advantage of supports for siblings. Both local and national
groups have opportunities for siblings to meet each other. Such
experiences are often validating.

8. Encourage parents to access support for themselves. When parents
seek out support systems for themselves, they tend to be better equipped
for the journey.

Thursday, September 9, 2010

Back to school, kiddos.

Whelp ... I guess summer got busy. So much for my pact with um ... myself ... to blog about our summertime adventures. I feel like therapy has consumed our life and I am currently evaluating our 4-mornings-a-week therapy schedule ... momma needs a break!

Somehow, it has been almost 7 years since I became a momma. I ... in no way, shape or form ... know where the time has gone and that bums me out. Big time. I feel like I've missed so much, even though I've been here the whole time!



School is back in session. Man, I love my kids but I'm loving the fact that I have my afternoons to myself this year! Our mornings are nutso ... three kids, three different buses, three different elementary schools. Come lunchtime, I'm ready for a break!

Mason has started 1st grade. I think he and I both were more nervous for him to start 1st grade than we were for kindergarten. I don't know what it is ... the fact that he is older, has more responsibility and is more aware of the social aspect of school? Why does the social aspect of everything stress me out so much?!


Speaking of ... I snapped this picture in a hurry as we got out of the car at the bus stop. Mason was less than thrilled and sort of placed himself behind the car so his friends would not have to see his mom doting on him. Oh dear ... I am such an embarrassment!


Nika was so excited to start school this year ... she jumped right into the mix of things at orientation ... I'm excited to see what this school year does for her being in a peer modeling classroom.


Even though Nika is just 9 months younger than Payton, I feel like developmentally she is so much younger. She has come so far since coming home from Russia, but she still has a lot of catching up to do. We are waiting for more spontaneous speech to show up ... her therapists do not believe she has apraxia like Payton, just really weak oral motor function. She can repeat every letter and sound of the alphabet, but developmentally she is not really putting those sounds together spontaneously.


Payton continues to be the little mother hen to Nika ... sometimes nicely, sometimes overboard. Ahem ... bossy little thang.

Here comes the bus!




Payton is in love with school. Even the sheer mention of school, she runs to get her backpack and is ready to go ... whether or not she gets to go to school that day. The fact that Mason got to get on his bus before her was a problem ... a big problem. I had to pull her from his bus line ... kicking and screaming. Oh, she cried. She just wants to get on the bus with everyone else! Hopefully now that she knows the bus order, things will be better ... even Nika gets to go before her.


I was so excited to wait for her bus with her. I knew she would be so excited ... and of course I missed all the rah-rah-jump-up-and-down on video. Grr.

Crazy chick. I can't believe we only have one year until kindergarten ... ahh!


And for kicks ... we had fun looking back and reading about the first day of school last year ... oh, the difference a year makes! Click here and here ...