Our Journey

We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.

Thursday, July 29, 2010

See Me Not My Disability

I was going to blog about the conference but I feel passionate about something else today. On the RTS list serv that I belong to, there has been discussion about the harsh things Dr's have said concerning our children. A lot of parent's have shared their personal stories about how their child was diagnosed. I am appalled at some of the things I have read. Dr's telling Mom's and Dad's to institutionalize our kids or just throw them away because of their disability. Or telling parent's that they shouldn't invest too much into their child because they will be low functioning. What?? Are you serious? These are professionals. If people like this can't get past differences, how is it possible to change an every day person's view on people with disabilities? I remember when Noah was a baby and our stupid pediatrician at the time addressed Noah as "Rubinstein Taybi Syndrome" rather than Noah. We never saw that Dr again. Some people are just pure ignorant. My child is a person with a name and feelings and everything else that goes along with living. He is not just a syndrome or developmentally delayed or whatever other word that goes along with it. He is Noah. All of our children deserve so much more respect than what is given sometimes. And I'm not saying everyone is like this just a overwhelming portion of our society. If only people that are so called "normal" lived like our children do. The ignorant people that view our children as irrelevant and just disabilities don't realize what they are missing. And to all the Dr's out there that told some parent's that their children will amount to nothing, Shame on you. You don't deserve to be in the medical profession. And to all the Dr's out there that have been sensitive and supportive, Thank you.

Thursday, July 15, 2010

Smarty Pants.


My son is transforming into a different little guy. Well, not all the time but mostly when he is at school. Can I just say "I love his teacher and the assistants". They are so fabulous and really have put my mind at ease. Mr Noah is sitting on the potty and actually going potty at school. Haven't had tons of luck at home but we are trying to be consistent. His teacher said every time he sits on the potty he goes. Also, as we were walking out of school yesterday, Noah's teacher asked him if he was ready to go home. He replied (signed) "yes, please". It was about the cutest thing I have ever seen. She gave him a big hug and kiss. What a smarty pants. But he is a polite smarty pants. I love it.

Friday, July 9, 2010

How Do You Deal With It?

I have been doing a lot of thinking lately about Noah's Speech or lack thereof. I have been trying to be true to myself and my feelings. Some days I don't even think about it and the thought that Noah may be nonverbal doesn't sting as much. But other days it tears my heart in two. I really don't share these feelings with many people and I was hesitant to write about them. But this is my blog where I can release any feelings negative or positive. I love with a capital L the fact that Noah is signing and getting his wants across. I love the fact that he can use pictures, a device or whatever to communicate but that doesn't compare to hearing his sweet voice. I am grateful that he says "ma ma" and I'm even more grateful that he has the ability to understand sign and other forms of communication but sometimes it doesn't feel like enough. The unknown is what gets to me. If I knew one way or another if he was going to talk I could just accept it. But the not knowing is so hard. I still don't think any parent should have to sit and wonder if their precious child will ever talk or walk? I hate it if I'm being honest. But then I feel guilty complaining because I know there are children and parents that are in a much harder place. I should just be grateful but it's still not fair. If you know what I'm feeling, I'm curious to know how you feel? How do you deal with it in your mind? The unknown? I do feel that I have long accepted the chance that Noah may be non verbal but it doesn't mean I have to be in love with the idea. But I know acceptance is vital to me. I would love to hear any thoughts.

Wednesday, July 7, 2010

Tuesday, July 6, 2010

How's Noah doing in school?

The changes in Noah since he started school are fantastic. I use fantastic because that is what is marked everyday for his behavior. I am so proud of my little guy for all his hard work. I feel comforted knowing that Noah loves going to school. Last night we told Noah he had school today. At 8.30 pm he signed "go to sleep". I was getting ready to put him to bed anyway but Tommy thinks he wanted to go to bed so he could hurry up and get to school. I really think so too. He signs "go" all morning while I'm getting him ready. The other day Noah led his class in circle time. He was the only one that matched the laminated pictures to the same pictures hanging on the wall. During his group speech therapy he sat at a table with other kids for a full hour. They were passing pictures around and the child either had to sign or say what the picture was. Noah was the last one to get the picture. His ST said the whole time he was waiting, he was signing "want, please". When it was his turn finally he signed "ball" (that was the object on the picture". All I could say was "wow" Noah sat for that long and didn't try to get up. His walking is 100 times better and he is following directions most of the time. I'm just so proud of him. When school starts officially in August he will be moved to a larger classroom. The classroom he's in now is just not fitting him developmentally. In other words he is running the show. Brag, brag, I know but I'm a proud ma ma...