In the last couple of months I have had discussions with fans on the Confessions of a Down Syndrome Daddy page on Facebook and at work regarding Carly and her development. The conversations always seem to end the same way “so there is hope that she will be able to walk, talk, etc..”
These conversations made me think about how I view hope and belief.
To me, hope is a thought or a prayer that is sent out to the universe as a onetime request. Belief is the deep down desire that you know it will happen. Hope is that New Year’s resolution we all make that goes by the wayside a couple months/weeks into the year until the next year when we make the same resolution. Belief is that goal/passion that drives us to get out of our comfort zones and live.
In my heart and mind, I do not look at Carly’s development as hoping she can do something, rather I look at it as I believe she will do something.
I believe she will walk.
I believe she will talk.
I believe she will do wonderful and amazing things in her life.
If you asked Carly, I am pretty sure that she would tell you that she does not “hope” she will do anything; rather she knows/believes she can/will do whatever she sets her mind to.
As a parent, do you hope or believe?
Today, the Centers for Disease Control updated its estimate of autism incidence in this country to an eye-popping 1 in 88 (from 1 in 110).
While the exact causes of autism remain unknown there is substantial evidence implicating environmental contaminants including chemicals. This evidence was best summarized by Dr. Phil Landrigan, Chair of the Department of Preventive Medicine at the Mt Sinai School of Medicine in his peer-reviewed 2010 paper, "What causes Autism? Exploring the environmental contribution."
Since then a 2011 Stanford University study of twins -- the largest ever -- implicated environmental factors for 57% of autism cases. Current policy at the federal level does not require chemicals to be evaluated for neurotoxicity (or any other health effect), and many known neurotoxins are used in commerce today. The CDC's chemical "biomonitoring" program has identified neurotoxins among the industrial chemicals it has detected as widespread in average Americans.
Responding to the announcement, Andy Igrejas, Director of Safer Chemicals Healthy Families, said, "Autism already takes an enormous toll on American families so it is bad news, indeed, that it is getting worse. As evidence accumulates that unregulated chemicals contribute substantially to autism, chemical policy reform becomes even more of a moral imperative. This spring the US Senate can help alleviate the problem by passing the Safe Chemicals Act, which would, for the first time, create an orderly process for identifying the chemicals that contribute to conditions like autism and apply appropriate restrictions."
I love going to my son's school. Some people might think it would be depressing to go to a school where each child is there because they have profound disability which requires intense focus and care. I have never left without a smile on my face. I feel lighter after being there. I feel hopeful, happy and a part of me is more settled and calm.
The people who work there... every single one of them, look like they want to be exactly where they are. No one seems over tired or irritated or 'over it'. I'm sure they get to those places, because we all do in our jobs, but these aides and teachers and therapists and the administrative staff, they seem like they have a calling to be there, serving children like Jack. And my son, and the children in his class really look happy to be there too. My son waits at the back door each morning waiting for his school bus to come. It is not pretty if that bus is late.
I've so very rarely been in a work environment that hummed along like my son's school. There was a great team at the Gap for a couple of years, and certainly I have gelled with current colleagues working on Thinking Person's Guide to Autism, but that kind of synchronicity and positive momentum are hard to come by.
So I am thrilled to help out at my son's school when my schedule allows it. Lately we've been focused on our annual gala, but there is always a way to help. I think it's important to participate when I can. I want to keep those teachers happy and supplied with treats and compliments. I'd like to think that my participation helps the school, but knowing the great feeling I have after being there for a few hours, I know it helps me.
Do you hear what I hear?
The other evening we were driving home with the classical station playing on the radio when I heard my 4 year old daughter say from the backseat, “That is a flute.” “That is a cello.” “That is a violin.” “That is the flute again.”
She was naming the instruments as they were featured in the song.
I was delighted that she could recognize and name the different instruments. She is actually paying attention to all the music we lay at our house and studio!
You can do this at home!
There are several ways to practice hearing the instruments played in a piece.
One way is to do what my 4 year old did and just start naming all the instruments you hear and recognize. The Young Person’s Guide to the Orchestra is a great one to start with since each section of the orchestra gets featured one at a time. It is easy to pinpoint which instrument is playing. Hint: The first four sections are woodwinds, brass, strings and percussion.
Another way to practice hearing instruments is to pick an instrument and follow it all the way through a song.
My Little Musicians classes really enjoy following the cuckoo clock throughout The Toy Symphony by Leopold Mozart. I have them raise their hands over their heads every time they hear a cuckoo. They really enjoy using their bodies!
Another great cuckoo clock song is Polka Francaise by Strauss. I have the students do a little hop every time they hear the cuckoo clock.
Make it a habit to point out which instrument is playing whenever you listen to music. You may be listening to rock when there is a guitar solo. Point it out! Say, “Listen to that guitar solo!”
When you label the instruments, your child will learn to recognize their sounds and will soon be delighting you with their knowledge of instruments.
Give it a try!
It has been one heck of a week for Miss Carly, full of progress in all areas of development.
First up was having her picture taken, by the Swampscott Patch, while she was at the recent “Pizza War” event. She made the front page of their news section.
Second, was having her work on her hand eye coordination and work on her molars by eating veggie sticks. Veggie sticks look a lot like French fries, taste like potato chips, and are made out of vegetables. Carly absolutely loves them and the family does to.
Third on the list was an all-clear for all activities at her most recent cardiologist visit. Heart looks good! We all knew it held plenty of love and are glad to hear that it is doing a great job with other heart stuff as well.
Fourth on the list was getting new lenses for her glasses. She loves wearing her glasses and having new lenses make seeing the Fresh Beat Band, and Brady’s toys, so much easier.
Fifth and final item on the list was one I am not sure if it would be considered progress or not.
Yesterday I was hanging out with Miss Carly; we were watching college basketball and checking out some stuff on the computer. I turned my back for a second and when I turned around, we were no longer watching basketball, we were watching Jurassic Park instead! On top of that, Miss Carly had decided that not only should we watch Jurassic Park; we should turn on the closed caption while also recording the movie. It is safe to say that she was mastered the remote control and I am not sure if I should be proud or not!
A very busy week for Miss Carly and I am excited to see what the next week brings, maybe she will help me hook up the surround sound…
Lindt, the swiss chocolatier, is holding a benefit auction: 75 of their signature gold bunnies, each with a celebrity's signature, are up for grabs -- and 100 percent of the proceeds benefit Autism Speaks.
In honor of National Autism Awareness Month, these porcelain versions of the Lindt bunny will be auctioned on eBay March 8-18. Which means that you still have time to snag a bunny signed by Kristin Chenoweth, Harrison Ford, Peyton Manning, Brad Paisley, Katherine Heigl, Regis Philbin, Sara Jessica Parker....
Click here to read more about Lindt's Celebrity Gold Bunny Auction, view all of the celebs, and place your bid.
PLUS, Autism Speaks encourages you to celebrate World Autism Awareness Day (April 2) and "Light It Up Blue." Now in its third year, the "Light It Up Blue" campaign helps raise awareness about autism. Iconic landmarks around the world show their support by sporitng a blue facade -- and you can too, whther it's your front porch or your Facebook icon.
Click here to learn how you can help shine a light on autism and to view pictures of blue-facaded landmarks, from Niagra Falls in Canada and the Canton Tower in China to the Palacio de Belles Artes in Mexico and the Terminal Tower in Ohio.
Music and family time go together like peanut butter and jelly. They were made for each other. There are so many musical activities families can do together. Children want their parents to sing and dance with them whether at home or in a class designed for the whole family. Parents’ involvement is an important part of the pleasure of music for children.
Family Music Night
Listen and sing to your favorite albums together. Children want you to hear their favorite music and they also want to hear yours! It doesn’t always have to be about children’s music even though that can be fun too.
Have everyone bring their favorite song or two to dinner and play everyone’s songs through out dinner. Everyone will feel important picking and playing music for the family. The dinner music might be extremely varied from Bach to The Wiggles or from Taylor Swift to Cold Play. But your kids will love knowing you cared to listen to their music.
Follow the Leader
Put on dance music and take turns being the dance teacher. Let your child be the leader and follow his moves. Then take a turn and teach them some of your moves. The moves can be real dance moves or simple movements such as jumping up and down, twirling and kicking. The important thing is to have fun!
Take in a Parade
Go to a parade together and listen to the marching bands and other music.
Many park and recreation departments put on free concerts in the summer time. Go together as a family and enjoy listening to live music.
Sing lullabies as you cuddle and rock your baby to sleep. It’s okay if your voice will not get you on American Idol. To your baby, you will sound like an angel!
Children are so happy when parents sing and make music with them. Music brings families together, creating memories in the process.
March 7 was “Spread the Word to End the (R)-Word” Day, the R-word being “retard” or retarded”. I didn’t want to post a blog post that day because I did not think that I could add anymore to what was already being said. Then, the other night at work it hit me, I did having something to add or update.
About six months ago, I wrote about my experience on trying to eliminate the R-word from my work teammate’s vocabulary. They were not using the word to be hateful but rather as a substitute for the word “dumb” or “stupid”. I worked on eliminating the usage of the R-word by instituting a $1 fine for each time someone used the R-word. After about four weeks, thankfully the fines ended as did the use of the R-word. You could tell that my fellow team members had worked on eliminating the word from their vocabulary.
For that last five months, there has not been an r-word violation or a fine collected.
I work in a distribution center (warehouse). In a warehouse environment, sometimes that language is a little saltier then in other professions. Though not common place, you will hear the s-word and the f-word a couple times a night. Not said in anger, just part of a conversation or two.
We have recently had a group of new hires come on board and I was listening in on a training session that other day between a veteran team member and one of our new hires. The veteran team member was going over an error that the new team member kept doing. After being told of the error, the new team member said “Sh*t! I am so retarded I keep making that error.” The veteran team member quickly replied to the team member stating “Hey, we don’t use that word here.” The new team member said that he was sorry for saying the word sh*t. The veteran replied “No, not that word. The R-word. It is a very mean word and if you say it around Fitch, be prepared to be fined a $1 or two and see a picture of his daughter who has down syndrome. And knowing Fitch, he’ll probably tell you that each time you say that word you’re calling his daughter that.”
“Wow” said the new employee
“Trust me it works” the veteran said “I don’t mind losing a buck or two but thinking of his daughter when I said it really hit home.”
At that point, I smiled and continued on my way. I am not be able to eliminate the use of the R-word in the whole world but even small victories count along the way.
Normally he's lost for words but put him in front of a microphone and Kyle Coleman can belt out a hit.
For most of his life Kyle, who has autism that rendered him mute, never spoke a word. Now at age 25, Kyle is breaking his silence and recording an album. The album, "Kyle, Therefore I Am," will be available on Amazon and iTunes on April 2. Money raised will go to the National Autistic Society.
I know what you're thinking -- how is this even possible...?!
Rewind to 2009, when his mother took Kyle to a music therapy session. There, Kyle not only picked up on music immediately (recreating his favorite songs through instinct), Kyle found music to be a natural way to express his emotions. Emotions that he could never previously express.
Kyle has recorded nine covers in addition to one special tune that was written about autism specfically for him to sing. The album's release is set to coincide with World Autism Day.
Dandelion recently featured a story about music therapy: click here to read on.
And, check out our very own Rhythms & Melodies blogger, who shares her passion and insights on the amazing power of music.
A good listener is almost always a good speaker and communicator. So it is important to strengthen a child’s listening skills.
There are so many sounds that we get used to hearing everyday and we eventually stop hearing them.
A fun way to practice listening and reawaken our sense of hearing is to go on a nature sound walk.
You can go for a hike on a bike trail, go to a park or zoo, or take a simple walk through your neighborhood.
As you walk, ask your child what he hears.
Can you hear:
A bird or different types of birds?
A fire truck?
Music from a radio?
A train whistle?
Leaves crunching under your feet?
Children love being outside and a great bonus to this activity is spending time with family. Being in the open air, experiencing nature with a valued mom, dad or other special adult is a healthy and memorable experience for a child. And practicing listening skills is an added bonus.