Back in mid-February, I wrote about how sand provides great sensory input and then said we were getting Ellie a turtle sandbox. Over a month later, I am happy to report that we finally got around to getting the sandbox. . .
Then getting the actual sand. . .
The reason the lid to the sandbox is propped up is because we are trying to block the sun. We are too cheap/lazy to buy an umbrella so we had to get innovative.
Then getting some sandbox essentials (shovel and bucket courtesy of a kid's birthday party favor) . . .
Hey, it only took us a little over a month. Right now, Mr. Hotty DIY is working on framing the windows in our kitchen. These would be the windows that we (aka Andrew) installed during our DIY kitchen remodel back in 2007.
Sheryl and I met in our church mom's group back when Jack was 6 months-old and Ellie just entered the world. I had just received Ellie's diagnosis of Down syndrome and Jack was just diagnosed with infantile spasms and later tuberous sclerosis. When Ellie decided to make mealtimes challenging by having an oat allergy, little Jack started a ketogenic diet to control his seizures. Different medical issues with different challenges, but somewhat similar journeys in navigating the special needs world.
Jack is Ellie's best friend. She mostly ignores all of the other kiddos in playgroup, but she follows Jack around like a little puppy. She wants to doing what he is doing. Play with what he is playing with. Jack is my little buddy who is always ready to give me a much needed snuggle.
Please visit Sheryl's blog Thumb In Mouth to read her special post about friendship and World Down Syndrome Day. Be sure to have tissues handy by the time you get to the last sentence because her final words had me sobbing. Check our her blog to learn more about Jack, Tuberous Sclerosis, and The Ketogenic diet.
March 21st has always been a very special day for me. It was the day that my brother entered the world and attempted to make my childhood full of sibling rivalry and love. He was my playmate and is now one of my closest friends. Evening more meaning was added to the date March 21st when Ellie was born. March 21st is recognized as World Down Syndrome Day. A day chosen because it represents the three copies of the 21st chromosome. Get it? 3-21!
This year is even more exciting. This is the first year that the United Nations is recognizing today as World Down Syndrome Day. Seven years ago, our communities started celebrating today and now, it is officially recognized by the UN. Not that we really needed the UN to approve this day or anything, but it is lovely to have such recognition.
For our community, this day is about unity. About all of us coming together to celebrate our children, our siblings, our aunts or uncles who all carry that extra special chromosome. It is also about education. About teaching others that we are more alike than different and that all life is precious, no matter how much genetic material a person carries. I love seeing not just our local or national communities coming together, but the entire world. So many countries uniting. All of us showing the world that people with Down syndrome are loved by their parents, by their siblings, by their friends. That people with Down syndrome have meaningful lives and are contributing members to society. Down syndrome is not something to fear.
I love the first video because it features children with Ds from countries I never even heard of (yes, I clearly need a social studies and geography lesson). It is beautiful to see these children in the classroom. Learning. With other children.
The second video is unique in that it shows the parents of children with Ds. Parents with inspiring messages. What would they would go back and say to themselves when they first learned of their child's diagnosis. I especially like the one that says "Normal is a setting on a washing machine". So true!
IDSC for Life: All Life Is Precious
What would you say to yourself if you could go back?
Going back 2.5 years ago, what would I say to myself? "There is no such thing as normal, but there is amazing. My daughter is amazing and perfect. It will be okay. For she and you are stronger than you think."
From my family to yours, wherever you may be: Happy World Down Syndrome Day!
If Ellie were a Disney Princess, she would be Ariel from The Little Mermaid because like the redheaded mermaid, she did not want to be "under the sea". From birth, the Princess toddler was adamant that bath time was the worse sort of punishment imaginable. Ever hear a banshee scream? Come to our house at bath time. Want to watch a toddler do death defying acts in a bathtub? Again, visit our house.
It has taken us over two years, but we have finally made it. Ellie loves bath time! I know that you probably don't give a whole hill of beans about this, but let me tell you, this is a HUGE milestone in the Ellie Bellie Bear household.
My dear daughter is typically a sensory seeker. She craves motion and often satisfies those needs by running, climbing, swinging, and by pushing ridiculously heavy objects that even I have difficulty moving. She is an oral craver. There is almost always something in her mouth. Hum. . . perhaps this is affecting her ability to speak?
However, in her sensory processing disorder world, she is an avoider in one area--her head. Mostly with water to be exact. She hates water on her head. I take you back to this:
This is before she turned a lovely shade of eggplant from screaming.
Look at those rolls of fat! Chunks!
I thought the Duck was working (see left), but it didn't last long (see right).
The Bear screams like a full-grown banshee when water comes into contact with her head. I was petrified to give her a bath. I mean, kids don't really need baths, right? They don't get that dirty. After much brainstorming and many experiments, we are finally able to give Ellie a bath without Andrew thinking I am performing cruel acts of torture. Let me tell you, it was so bad that I had to give baths without Andrew in the house.
Yeah, toddlers never get messy. (truth: we actually hosed her down in the backyard first)
How did we get here? It was a very slow and painstaking process. We desensitized her. Each solution would work for about 2 weeks before the novelty would wear off and the screeching began again. As she aged (yes, I know that 2 years-old is just ancient), bath time became more and more dangerous because not only was she slippery wet and squirmy, she was also mobile and would try to escape. I feared that I would be explaining to the ER just how my kid ended up with a concussion.
2. Immunology To make (an individual) nonreactive or insensitive to an antigen.
3. To make emotionally insensitive or unresponsive, as by long exposure or repeated shocks: "This movie in effect may resensitize people who thought they were desensitized to violence"(Steven Spielberg).
4. To make (a photographic film or substance) less sensitive to light.
Desensitization Therapy is a type of behavior therapy with a goal of reducing a person's emotional reaction (i.e. fear, anxiety, guilt) to a phobia by gently and gradually introducing the person to said phobia.
With the input of Ellie's early childhood therapist, some opinions of other mama bears, and creative thinking on my part, we were able make Ellie less sensitive to bath time.
Here is how we desensitized Ellie:
Tried to make the bathtub smaller and more cushioned--the inflatable duck bath.
Lining the tub with towels to provide a cushion and sensory input on her bottom and legs (really hoping that this would distract her from her head getting wet. Yeah, totally did not work and was a real pain. I loathe washing towels)
Me hanging out in the bathtub with her
Holding Ellie in the shower with me
Going to the sprinkler park during the summer
Letting Ellie sit at the bottom of the tub while I showered
Letting Ellie sit at the bottom of the shower with me supervising outside of the tub
Letting the tub fill up with water while I took a shower with her
Sitting in a tub full of water, no shower, no mommy in the tub--success!
Another step that we implemented was using a detachable shower head with different settings. We got ours at a great price at Costco and it was easy to install. I have experimented with different sprays and pressures and I have found one that Ellie will somewhat tolerate.
It has been a few months and the Bear signs "bath", runs to the bathroom, and will climb into the bath fully clothed (yes, she is that excited). She enjoys playing with her toys and dumping water over her head (think of it as rinsing her own hair).
Oh my sweet boy. Wyatt has not had it easy. On top of developmental delays related to Down syndrome, he also has hydrocephalus and possible cystic fibrosis. Wyatt really is not doing well at all and needs our prayers. I have high hopes, that with a loving family and proper medical care, Wyatt will thrive.
gpr3-26HA
Boy, born February 2009
Eyes: Gray
Hair: blond
Nature: Quiet
Update Sept 2011: Our little Wyatt is not doing well. He is described as a recumbent patient. Along with his Down syndrome, he has hydrocephalus and can hardly move his hands.
Update Jan 2012: Wyatt also has possible Cystic Fibrosis and is fed through a tube.
Please let's rally for Wyatt and get him into a family who can save his life!!
$3792.50 is available towards the cost of my adoption!
Our Down syndrome community is in an uproar. A huge uproar. We are saddened and disgusted. We are sad because it has happened before and it will happen again. Our heart aches for the little girl involved. For the little girl who will grow up and learn that her parents would have killed her in utero. Our heart aches for her older brothers for goodness knows what they have learned from this.
Last Friday, March 9th, a jury reached a verdict and nearly 3 million dollars were awarded to a couple for a wrongful birth. The wrongful birth of their daughter who has Down syndrome. They sued the doctor and the lab techs who failed to diagnose their daughter prenatally in spite of a CVS. Their reasoning--had they known that their unborn daughter was disabled, they would have aborted her. These parents saw dollar signs. They sued and they won. Here is the whole story.
I loved her the moment I saw her.
There are so many things I want to say. So many feelings floating around. You see, I did not know until Ellie was born that she carried a little something extra. I love my daughter with every single ounce of my being. Was I shocked? Yes. What I saying "Why God?" Yes. Yet the idea that I should sue never crossed my mind. Do I honestly believe that this money awarded to these parents will entirely be used for their daughter's medical care? No, I do not. If her parents truly did not want their daughter, they could have put her up for adoption where are loving family would rejoice at having her in their lives. Did you know that there is ~ 3 year waiting list for parents to adopt children with Ds?
Hi Everyone! I was recently contacted by an editor on SpecialNeeds.com to write a story pertaining to Ellie and Down syndrome. You can check out Pushing the Limitshere or you can just read below.
Pushing the Limits
As a pediatric nurse practitioner, I remember frequently telling my parents that they know their children better than I ever will. Now, as a mother of a little girl with Down syndrome, I know that to be true. I will always know my daughter better than any doctor, therapist, or teacher. I know what my daughter is capable of.
My daughter Ellie, at age 2, is full of spunk and mischief. She pretends that she cannot hear me when in reality, she is ignoring me. I have been told by many that Ellie “just doesn’t understand what you are asking her” when in reality, like any two year-old, she knows exactly what she is doing. I am not saying that I know all the ins and outs of Down syndrome, that I know every medical issue, or that I know all of the therapy exercises that a child with Down syndrome needs, but I am saying that as her mother, her number one care provider, I know my daughter the best.
After Ellie was born and the label of Down syndrome was slapped across her forehead, I heard many things such as she cannot or will not be able to do x, y, or z. Confused and aggravated, I started to research. Some of it was medical research, but I looked a blogs and web articles. I devoured those articles and stories written by other parents of children with Down syndrome. From them, I learned to have high expectations. Shoot high, provide opportunities, and you just might be surprised by what your child can do. I have held onto that belief for the past 2 years. Ellie can and will do amazing things. Do not let your poor expectations hold your child back.
I remember sitting at Ellie’s Early Intervention meeting 6 months ago discussing goals and I timidly said “I would like Ellie to know her primary colors." Ellie’s therapist of 2 years said to me “I do not think that is an appropriate goal for Ellie." My interpretation was “Ellie will not know her colors." To this day, I do not know if that is what she meant exactly, but I knew my daughter was ready and could learn her colors. It may take her a bit longer than typically developing toddlers, but she would learn them.
After that meeting, I took matters into my own hands and I turned learning into a game. I used the Flaptastic Colors board book to gain Ellie’s interest. I labeled everything we encountered. They were never just pants. They were pink pants. A red apple. A black cat. I would pair the sign with the color. As I sat with Ellie working on the Melissa and Doug Shapes puzzle, I asked her which one was green and she handed me the green circle. I asked again which one was purple and she handed me the purple star. A month later, I watched as Ellie read her Flaptastic Colors book. She was sitting looking at the yellow page signing “yellow” and saying “oh."
Since then, Ellie has continued to amaze me with her capacity and willingness to learn. I think back to when Ellie’s therapist told me it was an inappropriate goal and I realize now that she didn’t know my Ellie the way I know her. It is as I always told my patient’s parents, you know your child best. You must also push the limits and have high expectations for you just might be surprised by how much your child is capable of.
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gpr3-26HA
