Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Saturday, January 24, 2009

What Defines You? (A Guest Post)

Nathan's Aunt Charly just starter her Master's in Education and the other day I sent her an email asking how classes were going. The following was her reply (reprinted with permission).

“my teachers are pretty cool this semester. The one tonight had us bring in three items that define us or represent who we are. We put the items in bags and put the bags at the front of the room. During class, there was a figure of a man on the floor made by tape, to look like a crime scene with tape around a body. Toward the end of class we all got up and picked a bag (with items inside) from the front of the room (not ours of course) and brought them back to our seats. We then had to look at the items and place them around the "body" on the floor and describe the perpetrator based on those items! Then we had to pick a person in the room who we thought the items belonged to. So, in my bag I put a pic of Nathan, love of my life! A necklace that was made for me by a Kindergarten boy, Preston, on my last day of Student Teaching in his Kindergarten (it was my first homemade gift from a student that I taught), and Hawaii travel brochure to symbolize my Travel Agent background and impending certification. The girl who got my items made up a story based on my items about a girl who really wanted to go to Hawaii but couldn't because she got pregnant and had a baby and then she strangled a man with her necklace. hehe! Funny thing, nobody chose me because the pic of Nathan made them think it was someone who had a baby and the girls at my table know that I don't have a baby! Then we explained our items and their meaning. I said the baby is not mine. He is my nephew, the love of my life, and he has Down syndrome, so seeing him grow and learn has granted me a different perspective on children with disabilities one different than one I already have adopted by being a teacher of children with varying strengths and characteristics.”

Wednesday, January 21, 2009

Therapy Update

Nathan has been receiving therapy through the Early Intervention (EI) Program since he was five weeks old. Today, he is receiving physical therapy - twice a week, special education - twice a week, speech therapy - twice a week, and occupational therapy - once a week. We also have a social worker that helps us with paperwork and navigating through life with a child with special needs.

From what I know, the EI program requires a yearly evaluation with a new set of goals from all therapists - we've scheduled that meeting for the beginning of February. With this impending meeting just weeks away Nathan's therapists have been testing him to determine where he falls on the developmental pyramid. Therefore, I've been getting lots more "to do's" on my follow through plate, which is perfectly fine with me. I can't even begin to tell you how helpful Nathan's "A-Team" has been. Just yesterday, I learned how to apply pressure just right to the back of Nathan's hand that will help stimulate his muscles to release toys into their containers. It's just to help him get the feeling so he'll eventually do it on his own.

Did you know, that it takes Nathan and other children with low muscle tone 1o times the effort to do anything and other child does without thinking? The simple act of Nathan drinking from a sippy cup or waving goodbye is a challenge because it takes him 10x's the strength to pick up that cup or to raise his little arm. Think of it like this - if you work out at the gym and you usually curl 10 or 15 pounds for your biceps - go ahead and make it 50 or even 100 pounds (10x's the weight). I know I wouldn't even be able to pick those weights up. Not even with both arms. This is why Nathan's therapists have been so pleased with his accomplishments.
Nathan really gets to play with the coolest toys! Next week he's going to try some cool swing that is suppose to warm-up his muscles before he begins therapy. We'll see. I'll keep you posted!

Tuesday, January 20, 2009

Inaugural Dreams for Down Syndrome

Today, is a monumentally historic day for this country and one I hope will be the gateway to fulfilling the dreams of those with disabilities. To me, today is a victory for the civil rights movement - a day many have dreamed about.

The civil rights movement is not over.

Throughout the campaign, and now during the inaugural festivities of President Barack Obama, we have heard the names and dreams of Martin Luther King Jr. and Abraham Lincoln invoked. The President will even be sworn in with President Abraham Lincoln's bible.

I too have a dream ~ that one day my son won't be judged by the slant in his eyes and the draw in his speech. That one day, my son will live in a world where people won't look at him and see his disability but a person with great possibility. No different than you and I - each of us deserves every opportunity life has to offer.

One day, I will know the elation and overwhelming joy that so many Americans are feeling today. I just happen to believe that one day my son will be sworn into office and you'll all be watching history be made once more.

Monday, January 19, 2009

Weekend Wrap-Up

I can describe this weekend in one word - teething!

We were invited to celebrate this little handsome boys 3rd birthday but Nathan had other plans. Not long after we arrived Nathan began to cry - hard. He was relentless. We tried everything. The end result - we missed the Cars celebration and headed home so Nathan could calm down and drift into lala land.

Once Nathan woke up we headed to a family bowling night and we took along our niece. It was her first time bowling and she had a great time. After a few rolls she was telling me how to fix my bowling game. She is a chip off the old block!
Nathan has begun a chest cold and we're waiting to see how it goes. Danny went and purchased a liquid Vicks vaporizer for his room and I continue to use the aspirator on his little nose. You know this child is so awesome that he even lets me use the aspirator!!! Don't wipe his face but go ahead and stick that thing in his nose - it's all good.

Although, he is a little under the weather - he's back to his normal happy little self. The tooth broke through and now we're just waiting for the next one!

I mentioned to Danny the other day that so many parents complain when their child doesn't sleep through the night (believe me I know its tough and I'm not a huge fan) but I'm thankful that I even have a child to keep me up at night. All things pass - in time. (remind me of this when I complain!)

ON TAP THIS WEEK - Early Intervention is in jeopardy under the Governor's budget - I'll tell you how and what it means for children in New York State. I'll also post a therapy update - what we are doing and working on. Nathan's coming up for review in the early intervention program so I'm starting to get all sorts of feed back from his therapists.