Life with a little something extra…

Piano Lessons

Over the weekend, Erik brought Nathan down to his parents so I could have a girls weekend with my crew from MCLA. I had a wonderful time, but so did Nathan…playing the piano!! He loves opening the keyboard and playing away. And it doesn’t even seem like all he’s doing is banging on the keys. He seems to have a real knack for rhythm and sound. I know, I’m his mother so I’m a bit biased, but I’m seriously considering starting piano lessons this summer. I think he would enjoy them and he has always loved music. Thoughts?

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Check out my Facebook page for an awesome video of him playing, too.

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A little bit famous?

A few weeks ago, a representative from the National Down Syndrome Society contacted me about a company called “Nuby” that wanted to use a photo of Nathan and I for their Ds Awareness campaign.  At first, I was a little reluctant because once Nuby posted this photo, with my quote, on their social network sites, it could be stolen by anyone.  Then I thought that this could already be happening with other photos I have posted, and wouldn’t it be cool to spread the word with a wonderful picture of my beautiful boy?

I consented to let Nuby use our photo and was told that we would be made aware when it was published on their Facebook, Pinterest and Twitter pages.  That day came this past Tuesday, and I was so excited.  I was sent an e-mail with the link to the three pages, and we already had 100 likes on their Facebook page!  It really made me take a step back and realize that my life is not at all what I thought it would be.  I’m not saying that’s a bad thing, I just think it’s amazing that my son has truly inspired me to be a better person.  A person who advocates for the respect and rights of others.  Who thinks twice about what she says and how her words might be taken.  A person who has come to realize that judging others before you know them is one of the biggest mistakes you can make.  Nathan has opened my eyes to the joy and humor in life that I didn’t see before.  Yes, three years ago I would not have pictured my life being what it is, but I am glad that my life has taken me down this path.

With World Down Syndrome Day coming up on March 21, I am glad that we have become part of another aspect of spreading the word.  Continuing to help people understand that different doesn’t mean bad is one of the most important goals that I have and I don’t intend to stop.  Please check out the links below to see our ad for Nuby and their Ds campaign.

It’s a New Year!

I can’t believe it’s already January 21, 2013.  I do not know where these last few months have gone, but they have FLOWN by.  This blog has been completely neglected and I apologize.  Lots of things have gone on while I was M.I.A. from updating.  Here is a recap of the last few months with as many pictures as I can patiently wait to download before Nathan has to go to PT.

We spent Thanksgiving with my family this year and had a nice time.  Of course, I neglected to take any pictures, and so I have no proof that we did anything on that day, but I assure you, we did.  Soon after, my grandma in Texas passed away and I headed down there by myself to celebrate her life and spend some time with my family.

After returning from Texas, where it was nice to not have to wear layers of clothing for a change, we made our way into the Christmas season.  Spending Christmas Eve with Erik’s family and Christmas Day with mine is a nice tradition we have been honoring for the past few years.  Unfortunately, this Christmas also brought Nathan a fever that started on Christmas Eve and landed us in the hospital for 8 days.  First, here are the pictures from our Christmas celebration…

After fighting a fever and then congestion during the Christmas week, Nathan had some trouble breathing on the Saturday night after Christmas.  We called his doctor and she recommended we bring him to a place in Mamaroneck that’s open until midnight. Once we arrived there, they determined that he needed to go to Maria Farreri’s Children’s Hospital because of his breathing and virus.  After sitting in the ER (luckily in our own room) for 15 hours, we moved to a room in the “Literature Center”.  Nathan had a parainfluenza virus that they believe induced an asthma-like attack.  He was on oxygen for quite a while, and his numbers ended up dropping almost every night we were there.  That’s what kept us there for so long.  So after many conversations about taking oxygen and a pulse ox meter home, getting a sleep study, etc., we finally left 8 days later.  We were sent home with oxygen and a pulse ox and continued to monitor his progress at night.  Fortunately, the stats got a little better and his own pulmonologist did not think it was necessary for him to be on oxygen.  He truly believed it was the virus and thinks that if he had sleep apnea, we would have known it already by his snoring or breathing during sleep.  I am still going to seek a sleep study to completely rule it out, but it makes me feel better that his doctor does not think that is the issue.

Of course, after we returned home from the hospital, Nathan got a stomach bug THAT NIGHT!!  It was only 24hrs and he was fine very quickly, but it did make it’s way to Erik, which was unfortunate.

Now, we are all healthy and back to our regular schedules.  We are in the process of searching for preschools for Nathan next year and making that transition from EI to school district services.  Nathan is doing well in all of his therapies and learns so much.  His has a lot more signs and is trying to say a lot more words, like uncle and help.  He recently got his new orthotics, which are helping with his standing and walking.  I can’t believe he will be three in May!?!?!

On a side note, Nathan is going to have a cousin in May!!  Carter Paul Smith is due May 20th and we are so excited.  Congratulations to my sister Heather and my brother-in-law Bryan.  Can’t wait to meet that baby!

I hope you are all enjoying your new years and making the best of each and every day!

Day 22: 31 for 21

Just a quick post tonight….

One of the most important lessons I’ve learned along this journey of Ds is how important language is.  Thinking before you speak is something that not everyone has mastered, but is extremely important to do.

People first language is a tool that all people should use in their daily lives.  Simply by acknowledging someone as a human FIRST and not as a disability or disease, is extremely important.

Check out this link to read more…

www.disabilityisnatural.com

And some information on preferred language…

www.ndss.org

 

Day 17: 31 for 21

I’m going to stop apologizing for skipping days, and swearing I won’t do it again because guess what…..I WILL!  I wish I was the type of blogger who has something to write about on a daily basis, but I just don’t.

Even during Down Syndrome Awareness month, you’d think that I could come up with a topic for every day.  I….just…can’t.

Down syndrome, after 2 and 1/2 years, is just not something that I think about on a constant basis.  I don’t go around spewing facts or constantly looking up research.  I don’t look at Nathan and name all of the characteristics that he has that can be associated with Ds.  After this much time, I don’t obsess about Down syndrome.

This may sound weird to a lot of you, but when your son/daughter is diagnosed (pre or post-natally), it seems to be ALL that you think about.  At least it was for me.  It wasn’t like I was constantly negative about it, or thought it was the end of the world.  But it did change my entire life and I feel like I am a completely different person in some ways.  With all of the “what ifs” that come with this news, there are SO many things you learn along the way.  Wonderful people you meet.  Different experiences that you never thought you’d have.

Yes, Down syndrome can be scary and can feel in the beginning like someone punched you in the stomach.  But this feeling doesn’t last forever.  Your “normal” eventually comes into play and Down syndrome is just something that you occasionally mention or need to discuss.

For Ds Awareness month, one of the main points I want to get across is that Down syndrome is not a death sentence.  If we spread that word and share how wonderful, exciting and special it can be to have a child with Ds, perhaps things would change. Perhaps more people in the world will stop looking at the diagnosis and look at the person.

 

Day 13 and 14: 31 for 21

Getting back to some basics today, I am going to share some basic facts about Down syndrome today.  I know most of you who read my blog are aware of these facts, but it doesn’t hurt to share them and reiterate pertinent information.

One of the greatest sites for information about Down syndrome is the National Down Syndrome Society (ndss.org).

Here are some facts from their page…

MYTH: Down syndrome is a rare disorder.

TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, or approximately 6,000 births per year. Today, there are more than 400,000 people with Down syndrome living in the United States. 

MYTH: People with Down syndrome have a short life span. 

TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

MYTH: Down syndrome is hereditary and runs in families.  

TRUTH: Down syndrome is hereditary in approximately 1% of all instances.  In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).  Translocation is the only type of Down syndrome known to have hereditary link.  Translocation accounts for 3 to 4% of all cases of Down syndrome.  Of those, one third (or 1% of all cases of Down syndrome) are hereditary.  

MYTH: Most children with Down syndrome are born to older parents.

TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

MYTH: People with Down syndrome have severe cognitive delays.

TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

MYTH: Most people with Down syndrome are institutionalized.

TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

MYTH: Parents will not find community support in bringing up their child with Down syndrome.

TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. 

MYTH: Children with Down syndrome must be placed in segregated special education programs.

TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

MYTH: Adults with Down syndrome are unemployable.

TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.

MYTH: People with Down syndrome are always happy.

TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

MYTH: Down syndrome can never be cured.

TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Here is a link to their page so you can explore on your own as well.  The NDSS has some great stuff!
And to top all of this great information off, the 2012 Times Square Video is out!!!  Look for Nathan and I somewhere in the middle 🙂

Day 10 and 11: 31 for 21

Nathan and Brosius…they’re a pair that don’t see eye to eye.

Nathan LOVES Brosius.  He says the “k” sound in cat whenever Brosius walks by.  He signs “dog” (even though Brosius is a cat) when he wants him to come over to him.  He constantly crawls towards him and pulls himself up on everything in order to get closer to Brosius.

Brosius HATES Nathan.  Well, maybe hate is a bit of a strong word.  He doesn’t swat at him or try to bite him.  He just does all he can to avoid any contact with Nathan at all cost.  Honestly, Erik and I think that Brosius doesn’t understand Nathan.  Nathan came in and stole the spotlight and now Brosius only really seems to love Erik.  I guess because I technically brought Nathan into this world?!?!

We are lucky that Brosius basically just tries to avoid Nathan, but it is always humorous to see how intense Nathan in when he wants Brosius to pay attention to him.

Here are some visuals of Nathan and Brosius and their love/hate relationship.