Friday, August 26, 2011

I'm feeling it.

For us, summer is ending and a new chapter is beginning.

 Soon our days will look quite different from this.

We have more big changes ahead and I am feeling it.  Excitement.  Stress.  Anticipation.

For the next few days, our lives will be looking more like this:

And this:

And less like this:
He's the pool mayor and the pool life guard.

And takes his responsibilities very seriously.

We are moving next week, I'm starting a new job, and the kids are beginning daycare and preschool.

Are we worried? 

 Hmm...he may not be, but I'm certainly feeling it...

Friday, August 19, 2011

Because it IS our problem.

Yesterday I came across this post.  Please take a moment to read it, look at the pictures, and think...

This is a child, just like Dylan, with a diagnosis of Down syndrome.  And because of her diagnosis, she is thought of as having absolutely no value; no worth. 

How can this be?  

Advocate.  Educate. 

Because it IS our problem.

Saturday, August 13, 2011

The Dora Big Wheel

"See Cassidy wayyyy down there?"

"Yeah.  I want to do that, too."

"Hmm.  Feels like a pretty sweet ride."

"I'm totally doing this!"

"S'cuse me Cass."  (He seriously says this ALL of the time!  It's so funny...: )

"I guess I'll just see you guys later."

"See...just like Cass."

*Oh - It's a blessing that Cassidy is such a good sharer, because Dylan wants to have and do everything that she does!  I believe that she is his very best teacher...

Wednesday, August 10, 2011

Summ, summ, summah time.

This summer we had the option of either sending Dylan to a preschool for children with special needs, or opting out of summer school and continuing with his Early Intervention services.

Originally, I had planned on sending him to preschool as I thought it would be an integrated preschool setting, just like the one he will be attending in September.  But, apparently the summer program is different.  There are different teachers from the ones who will be teaching in the fall, as well as different therapists and children, too.  In the summer, only children who currently have an IEP (Individualized Education Plan) attend the school and are typically older than age four. 

Once I was told this information at his IEP meeting a couple of months ago (was it really that long ago?!), I decided to opt out of summer school and continue with his Early Intervention services.  Dylan has been receiving, and still does receive, Physical Therapy, Speech Therapy, and Educator Services.  We have been very fortunate that his EI Team agreed to continue working with him (except for his PT who went to India for the summer- BUT was quickly replaced by a wonderful woman!).  Dylan's team will continue working with him for the next few weeks.  Then...we are done.

I can not even begin to wrap my head around the fact that in 3 weeks, we will no longer have Early Intervention in our lives.  Dylan was a couple of weeks old when EI became a part of our family, and it seems so odd that we will be "on our own" once Dylan begins school.   Maybe it sounds strange, but I am actually really going to miss EI...alot.

I feel that the decision to keep Dylan home this summer has been the best choice for him. But really, he hasn't been "home" much at all.    The swim club is where we've been!  The swim club that we belong to, which is where I coach a swim team, has been a blessing for both Dylan and Cassidy.

No, he still isn't walking or standing (a post on that to come later).  I just like to stand him up against walls and/or poles.: )

Cass has made so much progress this summer, both in the water and out!

This is our first summer at this club, and I'm pretty sure that Dylan knows each and every member by name.

And I know they all know his.

I do not think it is a coincidence that Dylan's speech has increased dramatically this summer. I believe that this swim club has been the best inclusive classroom that we could have asked for!  

Now if we could just slow this summer wayyy down, that would be awesome.

Sunday, August 7, 2011

He surprises me.

Still after three years, Dylan surprises me. 
A few nights ago, we were doing our bedtime ritual of reading books and lounging in Cassidy's bed, when Dylan pointed to Cassidy's toy monkey, turned to me and said, "Monkey. Ooo, ooo.". I said, "Yes!!" and then asked him a few more animal sounds to which he knew. I ran downstairs to grab my video camera and filmed.

Having Dylan now able to better communicate with us verbally has made a wonderful difference in our lives.  He expresses his needs using spoken words which is so much fun to see and hear!  It truly allows us to see a whole new side to Dylan's personality.  Up until a few months ago, Dylan was primarily signing with us (he knows over 100 signs), which I highly recommend and am a huge advocate for!  But now that he is incorporating more and more spoken words, he is beginning to drop some signs.  He still watches (and is obsessed with) Signing Time, so while his spoken vocabulary increases, his signing vocabulary continues to increase as well.  Win, win. cute is he making little animal sounds?  Love him!

Wednesday, August 3, 2011

I'm not ready.

I have spent some time this past month thinking about my blog.  I considered letting it go, wondering if perhaps it's time...

But I'm not convinced.  There is still something keeping me here.

I'm not ready. 

I started this blog shortly after Dylan came home from the NICU over three years ago.  Dylan's diagnosis of Down syndrome was a surprise at birth.  As were his heart defects.  I started this blog to keep family and friends updated on Dylan's daily life - which is why I named it, "Days with Dylan".  I had no idea that it would become something so much bigger... 

This blog became my support system from quite early on.  I remember years ago, writing posts with tears falling down my face.  I was overwhelmed and found that the connection with others who were going through the same things as we were, immensely helpful and comforting.  Especially around the time of Dylan's heart surgery, I felt that I was not alone; that there were many people out there thinking of us...people who knew exactly what we were experiencing; what my own heart was feeling as his got repaired.

Now that Dylan is 3 years old, life is different.  I am not sad and I am not afraid.  I am hopeful, happy, and deeply in love with my son.  This past month I wondered if there was any reason for me to continue Days with Dylan.  Our life is...much less dramatic now. 

But there is a reason to continue.  The reason is Dylan.  The reason is the importance, the necessity, of advocating for people with disabilities; for people who are thought of as "less than".  If there is any chance that someone out there may come across this blog and walk away with the feeling that Down syndrome is nothing to be fearful of, then it is worth it.  If someone comes across this blog, spends some time reading about Dylan, and leaves thinking just a little bit differently about the way she treats others or the way she thinks about people with disabilities, it's worth it.  

I honestly believe, deep deep down in my bones, that Down syndrome is a blessing. 

So, I'm not ready to stop just yet.  I want to keep writing and sharing Dylan's story because I feel that it's a story that is very much worth sharing. 


Enough with the serious stuff...

More posts to come...