Miss Carly has braces, for her shoes, which will help learn how to walk. She has been walking, with assistance, around the house and at school. She is slowly getting the hang of it but still has problems staying upright as she wants to fall right down on her tushy.
Everything looks good as she takes each step. Her left leg initially turned in a lot, however; she is making progress and the turn is not as noticeable.
She is also using her braces to pull herself upright on the edge of the couch and she is able to move side to side down the length of the couch.
Before you know it, she will be walking around and chasing the cat around the house!
Looking forward to having her walk the Buddy Walk, next year, rather than cruise the course in her stroller.
It’s a great feeling to watch our children with special needs develop new skills, especially when those skills are hard won, and perhaps unexpected.
Having a child with special needs means letting go of all of those charts and posters that tell us milestones happen in some orderly fashion. Being this parent means welcoming a different drumbeat than you had planned, and doing so without resentment, because there are no guarantees, no promises about the kind of child we would welcome into our lives. Milestones that some parents will never notice are moments that have etched themselves into my mind because they represent so many, many obstacles Jack has overcome.
I remember the fist time Jack used his left hand productively-- he grabbed a tortilla chip and fed himself. That’s it. That was the big deal, but I remember the restaurant, and where I was sitting, and I knew that he had just gained a skill that would change his life forever. I remember when he held his own sippy cup. Shawn and I cheered in a little Indian restaurant, and relished the sense of accomplishment that Jack displayed, smiling as he independently waved his cup around.
There have been other moments over the years; when he could stand on one leg, put his hands through his shirt without assistance, when he scooted over in the booth to let someone else sit next to him. They are moments that get lost with a typical child, but the significance has never been lost on me when Jack has gained these new skills. Proud shining moments, occasionally tears, and always many warm congratulations to Jack.
But what happens when gaining a new skill means more potential danger? When a new skill comes before a solid-enough demonstrated understanding of the consequences for utilizing those skills?
When our daughter walked… very early, she wasn’t quite aware of all the things that can go wrong when you run across a tile floor, including not being able to stop quickly. At 8 months she ran across the kitchen floor, directly into the corner of the open dishwasher I was trying to load. Three stitches later she had learned her lesson, and began to slow down before obstacles.
But when Jack first could reach into something and pull out what he wanted he was taller than the counter. He wasn’t a ten month old reaching into the bin of blocks, he was seven and he reached into the sink with one hand and pulled out the dirty knife I had just placed there after making dinner. Yes, he grasped it by the handle and not the blade, so it is possible that he was merely curious, but our inability to communicate effectively with him left me with only one good parenting choice: prevent it from happening again.
When he mastered crawling at age six he chose to use the skill to go out the dog door and onto the deck. He still loves to play outside, any time, anywhere. But because I could not be sure that he would not go into the dog’s side yard, and into biohazards, and bramble, I once again had to ensure that he could not get out.
And just this week, Jack, who had been in his room, quietly asleep, undid a simple gate, which he has done before, walked up the stairs, twisted the back doorknob and went out the back door into the cool night.
Shawn heard him, jumped up, and brought him back inside and led him to bed, because regardless of his neurology, it was a school night, and too late to play outside.
Now what? I am beyond thrilled that Jack can twist open a door knob. The fine motor skills! The independence! The whole idea of opening a door and getting out of the swing of the door, and walking through calmly, it is so amazing. It is so exciting to see that he is gaining the kinds of skills that will keep him safer if there is an emergency, and skills that move him towards more independence, which is what we want for all of our children. I am so very proud of him.
I am also terrified, and looking for door alarms and have purchased security cameras, because for all the desire I have for my son to gain skills and independence, and move freely through this world, I am still responsible for his health and welfare. As his guardian, I need to keep him safe, and as much as I think I know my son, and have a fairly accurate ability to ascertain what he understands, I am at a loss here, because I cannot determine conclusively how much he understands about being safe, and coming home at the end of the day.
I look forward to each step he makes towards making his intentions known, his desires clear, and his needs understood. He can turn the handle and open a door now. He can tell me when he wants to leave, or go, or move on, and I want to acknowledge what he wants to do.
Now I need to figure out how to parent a child with more abilities, letting him know that I have heard him, I understand his intent, I know what he wants, I am proud of his gains in fine motor skills… and he still needs to go back to bed because it is too late to play outside.
Time for me to learn some new skills too.
It can be hard to see change in our children when we are up close and parenting, but things seem a little different around here. Summer has been close quarters in our family, with road trips and camping, but I know that this was a good summer for both of my kids.
Just as school was rounding out, Jack started in a new classroom. New routines, new classmates, new aides, I worried that his transition would be difficult, but he only came home happier and standing up straighter, and summer school was a perfect way to get used to all that new before he starts back at school this week. I think he's looking forward to going back.
He started and ended his summer with camp, a place where he has always gaind new skills in a quick time frame. His counselor noticed a difference in just a few days that he had increased patience during meals, and learned to gently tap her hand for more of what he wanted. At home yesterday he held a single finger up in the air in front of his mouth to indicate "just a moment, I'm not done." Providing us with more communication cues will make us better aides, and make things so much less frustrating for him.
And he is spending more time 'with' us, with me, and his dad, and sister. He's been coming into our bed in the morning, a ritual that his younger sibling still enjoys, and he's lingering on the couch with us after dinner, especialy if we switch to MythBusters or his dad's favorite car show. He's cuddlling up a little bit more, letting us get physically closer, staying still for a a kiss on the shoulder from his sister, leaning in to an arm thrown around his shoulder by a grandparent. At an age when most young boys begin to shrug off hugs and kisses from their parents, I think Jack is just getting warmed up.
It seems his coordination is better, he can stand on one leg a moment longer so we can get a shoe on his other foot, and he's shimmying into his clothes easier. He can scoot over in a booth with ease, and back up a few steps. He is using leverage to get in and out of the car that is higher off the ground, and ducking under things to play in the back yard.
He's showing more preference, or at least he's answering when I offer him choices: chocolate or vanilla, red shirt or orange shirt, stay in the living room or go to bed. It makes me so happy to think we might be closer to hearing his needs. I am thrilled when he and his sister 'talk' in the back seat. She asks him questions and he touches her hand to choose the answer.
I'm not sure that all of this happened over the summer, but with all of the sunshine, and family, and blue skies, and happy, and music, and wonderful times we've had, I think it's possible. Cheers to summer, and to change.
More than 125 young patients and their guests are eagerly anticipating the longest-standing children's hospital prom in the Bay Area.
The Mysteries of the Deep theme begins this Friday night (June 1, 2012) at Lucile Packard Children's Hospital at Stanford, where hospital schoolteachers from the Palo Alto Unified School District are putting the final touches on this year's very special evening. Beyond providing an end-of-school rite of passage, the eighth annual prom offers a rare chance for teens and other patients, many of whom have life-threatening illnesses, to immerse themselves in an age-old, non-hospital experience—this year full of aquatic adventures and treasures.
"It's so important for these kids—some of whom will never go to their school prom—to have a night where they can forget they're in a hospital and just be kids," said teacher Kathy Ho, who leads the coordination of an event that gets bigger and more imaginative every year.
Mysteries of the Deep offers a transformative experience from the moment guests step into the hospital elevator—decked out entirely as an underwater submarine—and descend deep, deep down to the Ground Floor. The school captains have it all charted out. Emerging into a kelp forest, kids will admire schools of fish, jellyfish, and other sea life suspended from the ceiling as they pass through a coral reef and enter prom.
More than 100 volunteers and local businesses have worked tirelessly for months to make this night possible, including DreamWorks (providing much of the art design and decoration), Anthropologie, Selix Formal Wear, Symantec, Genentech, Weir Catering, Feet First Entertainment, Sugar Shack and many more. Because of their generosity, kids will enjoy shaking their fins to tunes spun by a live DJ, diving into delicious catches of the day, throwing their bait out on the casino table, and exploring underwater adventure games including Poseidon's Pearl, Shark Attack, and Tic Tac Tuna.
Anyone attending the hospital school over the past year is invited to bring a guest, including brothers and sisters who relocated to the area while their sibling received care. Even past-year prom goers are hooked, some flying in from as far as Hawaii and Arizona.
"It's amazing how many of our former patients and students are coming back to the hospital to volunteer at prom," marveled Kathy. "The older teens are making plans with the younger students, encircling them with a sense of community, and creating a haven for the sickest of kids. That's what it's all about."
Read more about Lucile Packard Children's Hospital at Stanford here.
She is this close……
This close to taking her first steps.
This close to pulling herself up the couch.
This close to running along the beach with her brother and sister.
This close to trying to climb every object in the house.
This close to wanting to navigate the stairs from the first to the second to the third floor.
This close to having us chase her all around the house.
This close to her chasing the cat all around the house.
This close to opening a whole new adventure to all of us.
We are this close………
Every child is special and unique. Celebrate the qualities and characteristics that make up your little one!
Our names represent us! Children love to hear their names in a song. For more information on hello songs read The Importance of a Hello Song. Writing a song with and about your child will help instill a positive self-worth as well as show your child how much you love her!
Write your own song to sing with your child using her name as the basis. It is easier than you think!
Here is a song I wrote with my daughter Angel. Sing it to the tune of Jingle Bells.
Angel Joy, Angel Joy
She likes dolls and toys
She's so good at drawing and art
She reads with all her heart!
Angel Joy, Angel Joy
She loves to play outside
She has lots of sisters
And she's always by their side!
Angel was delighted to do this project with me. She was smiling the whole time and felt really important singing our finished product to Daddy.
Here is another song, written for my daughter, Shelli. Sing it to the tune of Mary Had a Little Lamb.
Shelli has a great big smile,
Great big smile,
Great big smile.
Shelli has a great big smile.
She makes me laugh all day.
Shelli rides a scooter,
Shellie rides a scooter.
She rides with Daddy all day.
Shelli is a reader,
Shelli is a reader.
She reads books all day.
Shelli has 3 sisters,
Shelli has 3 sisters.
She loves them all day.
It is important to allow your child to help you as much as possible!
Write the song together.
Sing it all the time.
You could incorporate musical instruments to make it more complete!
But most importantly: Have Fun!
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!
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.
Did you see it? On page 9? The one in the orange shirt... Right?
I saw it, but I truthfully nearly missed it (actually, it was the $1 socks that first piqued my interest) -- and I think that's the whole point. That's the beauty of Target's recent placement of a model who has Down syndrome in their Sunday ad.
Flipping through the ad circulars on Sunday, I almost didn't catch "it." After all, Ryan, the child model with DS, isn't wearing a "We're all special" tee-shirt, or even a sweatshirt promoting the R-Word Campaign. He's just a kid. With other kids. Wearing regular ol' clothes.
You can't get much more typical than that.
I have to commend Target for not only featuring a child with DS in their ad, but for the admirable way they did it: with out making a big deal about it. They didn't put a big arrow next to Ryan saying "Hey, look at Target! We're including kids with special needs! This week we're giving you a special ad filled with special clothing for special people!"
Nope. No bells, no whistles. I'd say that's inclusion at it's finest.
Here's hoping that they continue their wonderful effort in more ads to come -- and that other major organizations take heed and follow suit.
Noah's Dad published a fantastic blog post about the ad: 5 Things Target Said Without Saying Anything At All. His words are witty, insightful, and definitely worth the read.
Jezebel, a Gawker Media blog, points out that Ryan was also recently featured in a Nordstrom advertisement. They also make a wonderful case that this type of advertising is win/win in their What Happens When A Kid With Down Syndrome Models For Target and Nordstrom post.
So... Did you see it?