Sunday, February 28, 2010

I don't think...

that I have ever seen Dylan feel this badly before.



For the past two days, he has been battling a nasty stomach bug, fever, cough and runny nose.



Oh, he is just not...himself. And I miss him.



Wow. Having a sick child sure makes you appreciate the good ol' healthy days...yeesh.

Get well soon, Little One.

Wednesday, February 24, 2010

Tuesday, February 23, 2010

He CAN do it!!

When you have a Little One who works extra hard at achieving his goals, progress such as this:

video

means so much more than words can say...

Monday, February 22, 2010

Is it just me?

Or is this...



(the hats, mittens, boots, snow pants, heavy jackets, etc...)



getting pretty old?

Just checkin'...

Wednesday, February 17, 2010

A little bit of fresh air.




Earlier this morning, I logged into the computer to check my email. I was unsuspectingly greeted with a news story on the Yahoo page about the latest Family Guy episode. I didn't read the whole story nor did I click on the little box where I could have watched the bit from the episode where apparently a cartoon version of a girl with Down syndrome is shown. I also chose not to listen to the little boy, Stewie, sing a song from the episode titled, "Down syndrome Girl".

Nope. Not gunna happen, not today. Whether it is offensive or not, I am not going there right now. I don't have it in me.

I closed my laptop.

I got up and motivated. I gathered and then dressed my kids in their million little cold weather layers, and headed out the door.

Ahh.



This is much better.



A little bit of fresh air.



And a lot of perspective.

Sunday, February 7, 2010

Learning to do better.

One night, before Dave and I were married, we had a conversation.

It was about, if we could, what we would change about the other person. I can't even remember what I said. Something about how I wish he wasn't so defensive or maybe it was how it bothers me that he bites his nails until they are nothing but little nubs.

When it was Dave's turn to tell me what he would change about me, I remember exactly what he said. Out of all of my 32 zillion faults, he said, "I wish you wouldn't say the word retarded anymore. My very best friends have a child with Autism and it really bothers me when you say that.".

I shrugged and apologized. I told him that I wouldn't say it anymore.

We moved on.

~

And there it is. I used to say it. Apparently quite often, too. I didn't think anything of it, to be honest. I never meant any harm and I certainly never meant to offend anyone by it. After all, it was just a word.

I feel ill when I think about it. I feel confused. I feel like a hypocrite. Like a phony. I wonder what right I have now to sit here shaking my head at people who use the word? Why do I now get to be offended when I hear it come out of other people's mouths? I used to be one of those people! Why now do I get to feel that pit in my stomach when I see the word in print, as a joke, or when I hear it time and time again on the television?

Why?

Because of Dylan.

He has changed me. Without doing anything, other than being him, he has given me that right. He has opened my eyes and has made me better. He has guided me in the belief that once you know better, you do better.

And I am learning. I am trying to do better now because my little guy and all people with intellectual disabilities deserve us to.

Will you try?

Because this? This montage?

It hurts. Yes, now that I know better, let me tell you that it hurts very much. This is the world that we live in. Indeed, in the past I played my own hurtful part in it, but no more. Everything is different now for this is the world that my son will grow up in. A world in which he will be made fun of, just because he is...Dylan. It doesn't have to be that way, if we can change. If we can be open to the idea of learning how to do better...learning how to treat people well.

Let's do better. Let's learn to pay attention to the things that we say, the words that we use. Because intentional or not, they can be offensive. And just like you, people with Down syndrome deserve respect.

Please visit this website to Spread the Word to End the Word.

My Little Swiffer Sweeper

video

Now...to figure out how to attach a wet jet to him so that he can clean the floors properly... : )

Monday, February 1, 2010

It's Strange.

Dylan had his 18 month evaluation last week. It was the first time that everyone from our Early Intervention team was together, in our house, at the same time. So, all sitting around my family room, was our Service Coordinator, Family Counselor, OT, PT and ST. I wish you could have seen the look on Dylan's face as they walked in the door one by one. He was SO surprised, excited, confused, overwhelmed, happy...

And with all of those emotions going at once, he was now expected to focus and perform well on his test. Hmm. Being the social butterfly that he is, I thought, this ought to be interesting.

It's strange, this stuff.

Everyone sitting around, writing feverishly, as Dylan does or does not uncover a block hidden beneath a towel. Did he put the required 9 blocks in the container? No, only 6. It doesn't count then. All the while, I'm smiling, but thinking, "Will he do the sign for 'milk' this time or not? I mean, he'll do it a hundred times when it's just me who is asking, but will he do it this time? Aw, c'mon Dyl! You know how to say mama! Look at me, Bud. Point to me! You know how to do this."...

Ah, my poor little guy was so distracted. I think he thought it was a party rather than an evaluation...

At one point, they asked me to ask Dylan to point to my nose. I made the mistake of piping up about how consistent Dylan is with this one. "Oh! He always does this one - watch!". I got right up close to Dylan and asked, "Dyl? Can you point to Mama's nose? Where is my nose?". Sure enough, as I sat there awaiting the nose poke, he jabs his finger right into my EYE. I didn't even see it coming. Everyone laughed politely. And I was left wondering...

It's strange to go through these "tests". To have your baby sit in the center of a big circle, while each of his movements and sounds are being recorded. To watch, but not be able to do anything. Or say anything to help. Oh, I know that it does not matter what the results are. I know Dylan and whether or not he'll perform on command does not change a thing in my mind. Of course, I still want him to do well, though. I want everyone to see the nice progress that, with the help of his EI team, I get to see each day. They reassured me that they all know Dylan very well and do see progress each week. This test is just something that they have to do...

I asked, as I always do, to please not share Dylan's "scores" with me. His EI team respects that, which I truly appreciate. Hearing where Dylan could or should be if he didn't, in fact, have that ol' extra chromosome, is useless information to me. I know, just as I think they do, that Dylan is progressing. We know that Dylan is learning.

He is a healthy, curious, motivated, social, and loving 18 month old little boy. And that all seems pretty darn good to me.

It is still strange, though. Evals...