end of school=beginning of summer

well...one more short week and another year of school will be over...summer school or extended school year begins...it still feels like a toss up to me...driving clear across town for 3 hours of summer school doesn't sound that exciting, but the 2 hour break I'd have would be great. ESY might also mess up our summer plans for the water park and beach, but then again ESY is only 5 weeks....see what I mean...I keep talking myself in and out of it. I guess the bottom line is...what is best for Sadie and the greater good of the whole family at the same time....ok still can't decide...

recent obsession with ice

Sadie has replaced her bubble push talk obsession with ice.  So I took one of her cheaper one push buttons and a photo of ice, I put it in a 4x6 photo sleeve and taped it to the refrigerator.  Every time she wants ice she pushes the button. It seems that she is doing this every 2-10 minutes…. The idea is that she gets an immediate response and hopefully learns to push the buttons to communicate her desires…..hopefully….

energizer bunny

funny how when you make a vow to be honest, that you then reconsider just how honest…even omitting…that’s not honest either is it? So, my last post i made a vow that my blog posts would be real…and here’s the reality.

i took shelbi to the new park on the beach this morning, the one for “all” abilities…and to my happy surprise, i ran into a  friend who has a little girl with Down Syndrome.  I consider this friend to be very similar in personality to myself and we always have lots to talk about.  Her daughter is about 6 weeks younger than Shelbi.

now here it comes…the truth…i watched her chase after her, assist her with all levels of the playground, the slide, the steps, and we followed her around chatting , while she followed her little girl around to keep her safe.  it finally occurred to me that this is EXACTLY what i must look like to all other people when i am chasing after sadie.  i just kept thinking, how can it not be obvious to the people around me that while i chase and follow sadie that it must be exhausting…she’s like the energizer bunny….she just keeps going.  i wonder what other people think when they see us together, when they see us following sadie for her safety. when they see that we NEVER have the chance to sit and talk, that we NEVER get the chance to enjoy the meal with everyone else…….is it really not so obvious?

usually when we go out to the park, cookouts, family functions, most of the time, everyone else is able and allowed to sit in their little *circle of friends and family*…they get to catch up and chat, but with sadie we are in constant movement to keep her safe from falling, putting dangerous things in her mouth, climbing on or standing on objects that would hurt her, holding her hand as she walks across uneven ground.  and i walk and walk and walk and the little energizer bunny just never slows down for a break…NEVER….and…

thank you all the people who have been aware of the never ending following that we do to keep sadie safe and especially a big thanks to Amy and Nanny for helping me have fun at last Sunday’s cook out by following sadie and helping me keep her safe, while also being able to have some fun too.

NUK

I'm adding this video because the OT keeps telling me to use the NUK, which we do all the time and have had for the past 2 1/2 years. This video was taken March 2008..........

I'm exhausted with the same ideas and need new ideas to help her chew, swallow, and reduce the drooling. but when you have a child who could really care less about food and eating and seems to be stuck in the put everything in her mouth phase....well what else am I supposed to do???????

honestly

Lately, I’ve been reading a lot of blogs by other women who have children with disabilities.  The more I read, the more I feel like I’m painting a fake coat of paint over my life in my blog.  These women are truthful, deep, eloquent in their words about their lives.  They say all the things that I want to say, all the things that I blog throughout the day in my head.  I’ve been realizing that I always cut the truth short and try to make it a sweet positive picture.  I never want to burden anyone with my normal, my reality, my disappointments. I never want to offend anyone, especially the people who I love the most who read this, but truly don’t get Sadie or they are afraid of her, or they are afraid to say anything…say something…After all, the majority of the people I know, simply have nothing to complain about, well besides the insignificant normal issues of parenthood or life. When someone asks about Sadie, I most always reply, she’s great, thanks for asking.  But when I read the posts by these total strangers, these foreign bloggers, these yahoo groupers, I feel connected and it feels good to know I’m not alone in my feelings. 

It hit me the other day after having a few conversations with my new friends.  My new friends who also have children with disabilities, that the dynamics of my old friendships have changed, and I’m the one who changed.  I’m the one who doesn’t have the patience to listen to the trivial.  I don’t know exactly where I’m going with my post/point here, but I just want to start being real here on this blog.  I don’t want to sugar coat it, I want other mothers who might be in the same position as me to feel a connection to me the way I do to them. I never meant to mislead anyone to think that life with Sadie is easy and wonderful all the time.  Don’t get me wrong, life is wonderful and I have a lot to be thankful for, but it isn’t the normal that most of my normal friends have.  (please don’t hit me with “who is normal”) And this reminds me how thankful I am for the fact that I appreciate everything that Sadie does in her life.  Every little utterance, every hug, every kiss, I’m even grateful when Sadie puts her straw cup on the table rather than throw it.  Silly to you maybe, but that is a huge accomplishment and testament to her cognitive growth…she reached that milestone, and I love it. 

at the botanical gardens

We celebrated Mother's Day with the family at Botanical Gardens. 

 Sadie absolutely loves to be around other people, smiling, laughing, simply

exploring. This photo was taken after she spent a few minutes waiting in
line to see the bald eagle nest at the Botanical Gardens. She patiently
stood there and when her turn came, she jumped up and down with her arms in
the air indicating that she wanted to look next. And she actually did look
for just a second. But most of all she enjoyed being on the step to the
telescope and Memaw standing behind her trying to help.

Grateful Mama: Thoughts on mothering my daughter

http://sugarmagnolia70.blogspot.com/2010/05/thoughts-on-mothering-my-daughter.html

Sent from my Verizon Wireless BlackBerry