Many Faces of Ellie: EXCITED

Why is Ellie Bear so excited?

Could it be because this week is Spring Break?

Spring Break means lots of playtime.

Spring Break means lot of lounging.

It also means lots of snuggles.

And no therapy (okay, well less therapy)!

Happy Spring Break!

Maria Lin, the mother of a young boy with 18q deletion, recently wrote the article 6 Things You Don't Know About A Special Needs Parent and I have to say that for me, it felt spot on and refreshing.  It was as though someone finally aired out all of those feelings and thoughts I had carefully kept silenced.  

As a parent to a special needs child, I find myself trying very hard to always be positive and to make the world seem like sunshine and rainbows all (okay most) of the time.  It is as though if I am not spouting off the wonders of Down syndrome and all of the wonderful accomplishments of my daughter, I am not a good mother.  I am not worthy to be Ellie's parent. Or even worse, a scared pregnant woman seeking information might read about our trials and feel that she cannot handle a baby with a little extra. Yes, many of us parents of children with special needs truly feel blessed beyond measure.  Yes, we are forever grateful for our children and wouldn't change them for the world, but sometimes we feel alone, tired, and quite honestly jealous.  We are not super parents.  We are not any more special than parents of those with 'typical' developing children. We are only human.  Which leads me to what Maria Lin says so eloquently in her article: " the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed."

Thank you, Bliss for sharing this excellent article with me.

6 Things You Don't Know About A Special Needs Parent

by Maria Lin

 March 9, 2012 Huffington Post

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.

My 3-year-old son Jacob is one of them.

He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.

Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.

Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).

Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watchMad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

 

Follow Maria Lin on Twitter: www.twitter.com/marialinnyc

Dancing My Way Thin and Misc Ellie Pics

I used to be poor in college, low on funds in my nursing career (hey, those student loans won't pay themselves!), and then strapped for cash again in grad school.  That means I spent a great deal of time chowing down on scrumptiously cheap Carnation Instant breakfast and oatmeal.  It was not a balanced diet by any means, but I had a decent body covered in gloriously, sexy scrubs.  Scrubs with teddy bears and Hello Kitty.

Then, I met Andrew (oh yes, I am totally blaming all of my weighty troubles on Mr. Hot Buns) and he introduced me to yummy food, fine cuisine, and butter and red meat and cheese.  I indulged perhaps a bit too much, as in all the time, because now I fear for my weight, my cholesterol, and potential diabetes.

The fact of the matter is I need to live forever.  Every parent worries about their children.  It is the nature of being a parent.  Yet, I worry so much about Ellie because who knows what the future will bring.  Will she be able live on her own?  Will she live in a group home?  Will she need to live with me and Andrew?  This isn't the typical "my kid is 21 years-old and out of the house" sort of set up here.  Hence, I need to live a very long time.  Not only that, I want to have a higher quality of life during my extended lifespan.  Energy.  Blood sugar control.  Normal cholesterol and blood pressure.  Plus, let's not kid ourselves here, perhaps a smidgen of full blown hotness with rock hard abs.

Some of you are well aware that I have started taking Zumba classes at 24 Hour Fitness.  What is Zumba?  It is dancing to music with an instructor in a class-like setting.  There is a huge Latin influence with a lot of salsa and meringue moves as well as hip-hop.  No, you do not need any experience.  Yes, it totally kicks booty.

Ellie Bear has her dancing moves down!

After a few weeks of sweating it out to music I do not normally gravitate towards, I have come to the overall conclusion that I am not exactly good at dancing.  Given the times when I am able to make it to the gym (typically late morning or very early evening), most people my age are working in the corporate world.  Therefore, I am one of the youngest people in the class.  I am also the most uncoordinated (feel free to snicker here). Oh yes, there are much older ladies who are way more coordinated and way more sexy at shaking those hips than I am.  I really thought that my years of salsa instruction would come in handy.  Not so.  Apparently Zumba salsa verse casino rueda salsa have slightly different footwork.  I am getting better with the more classes I attend, but most importantly, I am having fun.  So much fun that I actually work out for the hour-long class which is more than I can say for the treadmill, bike, or elliptical.

Which brings me to. . . . what kind of shoes do you recommend for Zumba?

Silent Sunday: Enjoying the Outdoors

not very ladylike behavior here.  time to teach the bear about criss-cross-applesause

Forget Me Not Friday: Malcom

Forget-Me-Not Friday is a blog host sponsored by Jane at Flight Platform Living with the goal of bringing about awareness of orphans with special needs in Eastern Europe.   To learn more about why this is such a cause close to my heart, please click here.

Malcom

Malcom is a little boy who was brought to my attention by my emailing buddy S.  I took one look at his sweet picture and my heart melted.  Then I read his story and I cried.  This sensitive boy is being physically hurt by the older, healthier children in his orphanage and yet, look at his sweet smile in the photo!  While Malcom has cerebral palsy and cannot walk, he does maintain sensation in his feet.  I can only imagine that with the proper medical care and a loving family, he could maybe one day walk!  This boy needs a chance.  A fighting chance.

Malcom is facing the mental institution in April. ONE month.  Is it too much to hope that he will have a family by then?

Please, read his story:

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Boy, Born April 2007

Malcom has spastic displegic cerebral palsy. He is scheduled to be transferred to a mental institution in April 2012 

From a missionary who knows him:  Malcolm needs family badly. He is very emotional, sensitive and not a leader by nature and is being hurt by older and physically healthy children in the orphanage. He can hardly walk but retainssensitivity in the feet. There is a chance only in the presence ofcaring and loving parents Malcolm can walk independently in a future but in the orphanage environment the child is afraid of everything even walking. Malcolm has a favorite little toy: stuffed tiger, he carries it everywhere, he kisses it, puts to sleep, worries about it. Malcolm is interested in all new, he knows the names and colors, understands commands, has attachments to friends in a group, he goes on contact easily and is pleased to dialogue.

He can stand and sit independently, moves around on the knees. He can not walk and is afraid to start trying to walk.  

Malcolm will need a smaller, patient, loving, experienced family to help him heal from the trauma in his life. 

From his medical records:  Cerebral palsy and weak muscular tone.  He only started to walk in the hospital as he had muscles tremor. After the physical therapy, massages and injections – the tremor has disappeared.  As of today, Malcolm can walk with support and the orthopedic footwear. He can make some steps (7-8) without any help and then gets tired.   The doctors give a very favorable prognosis about his walking ability in the future: most likely he will not need a wheelchair.  He has incontinence only because he is not potty trained. He feels the processes and tells the nurse when he has soiled pampers and urinates only when the bladder is full.  Malcolm can eat with a spoon and drink from a mug independently.

He sleeps well and does not wake up during the night. After a dinner if being left alone in a room, falls asleep independently. He is an obedient child, he understands the commands and goes on compromises! He is able to agree and listen to words of adults when it is impossible to do something.  He does not show too much concentration on any activity like almost all orphans. But he has well developed cognitive skills. He loves to dress/undress toys; pack/unpack gifts;open/close cases, cars; play on children's kitchen: to wash the children's dishes, to set up the table. He loves to play with the puzzles and listen fairy tales but it is necessary to show him the  pictures in the book first and  then he would listen with more attention and will tell, that he has heard.

His vocabulary has extended lately. Malcolm is a tender and cheerful child.  A close attachment to the family will be developed when adopted.

$6474.22 is available towards the cost of my adoption!

You all know the drill--pray, spread the word, and donate if possible.  I am hopeful that Malcom's family will find him.

The Ball Game and Wordy Measures

Progress:
My how far we have come!  Just 4 weeks ago, Ellie had the hardest time obeying directions.  She would refuse to sit in the chair and would run after all of the balls.  She would place one ball in the bucket only to pull out the other balls and throw them.  Then there was the time where she ignored the balls and instead  peeled off those round colorful little rugs (and try to put them in the bucket).  Rarely did this little Chicken return to her chair in between each ball run.  Actually, rarely did she sit in the chair at all. Look at her now!  Ellie is defying expectations.  She has proved that it IS POSSIBLE that with lots of patience, lots of repetition, and lots of positive reinforcement, rules can be learned and a game can be played.  Go Ellie go!

A Slue of Words:
If you notice in the video, Ellie was consistently saying "ball" and "bo".  As in ready. set. bo. I mean go.  Didn't you know "bo" is the cool kids' way of saying "go"?

A month ago, Ellie was not saying any of these words.  For the longest time, there were no words.  Ellie was silent.  Babbling was rare.  Then came mama (for Andrew of course).  Later on, dada.  Then nothing else.

I still despaired that my daughter would never talk.  I worried about why so many other children with Down syndrome were saying for more words and signing way more signs at a younger age than my daughter.  WOULD SHE EVER TALK?!  Our speech therapist had no idea why there was no progress.   Our ECI therapist, had no clue either. Then suddenly, in the past 2 months, new sounds and new words began to emerge.  What changed?  I honestly have no idea, but something clicked.  My girl is making progress and I am proud.  Do I still worry?  Yes, but I am grateful for every single sound that pops out of my Ellie's mouth.  Just when my faith is teetering and I am almost ready to give up hope, Ellie surprises me.  She reminds me that she CAN and WILL do things on her own time table and when she does, we celebrate.


Okay, back to the ball game. . . .
This video is a bit longer (which means I don't really expect you to watch it :-), but it gives you a snapshot as to how Ellie behaved when first learning the game. I honestly thought this was a lost cause at first.  I thought it would take months upon months of work.  I mean seriously, this little monkey has a 3 second attention span and prefers climbing and wrecking havoc to sitting daintily in a chair.  Yet, after seeing the above video, my girl proved to me that I need to have high expectations for she is going to surpass them.




Finally, a little shameless plug.  As I type this, The Chronicles is sitting at #26 on the Circle of Moms Top 25 Inspiring Families.  Voting is open until March 7th until 4pm or some other odd time so you have tonight and part of tomorrow to vote.  You can vote once every 24 hours.  Love another blog?  No worries!  You can vote for your beloved blog and The Chronicles of Ellie Bellie Bear.  To vote click here or on the badge in the upper right side bar.  Ellie and I thank you!

March 7th: The Day to End The Word

The R-word that is.  That's right, March 7, 2012 will be the annual day of action focusing on bringing about awareness and ending the use of the R-word aka retard.  You all know how deeply I feel about people using this word in an offensive, derogatory manner. If you have no idea how much I am irked by the R-word, you can read my R-Word Rant here.  I am actually rather sad that we even need a day to focus on ending the inappropriate use of this word.  However, I am hopeful because across schools and several organizations awareness will be brought about. People, especially our youth, will be informed. I know that things will not change over night. I am not that naive.  Yet, I do know that over time, with more awareness and education, a change will be made.


*I have seen fellow bloggers stamp "retard" across photos of their children to send a powerful message.  It does send such a strong, poignant message, yet I am not brave enough to stamp that label across my daughter's face. However, it really does make a person think and so, please visit two such blogs here  and here*

Would you call this innocent little girl a r*tard?  Would your children?  Because, when I hear that word, my little girl being cruelly labeled pops into my head.

I am begging you to please, recognize that words truly do hurt people.  To please remove the word r*tard from your vocabulary.  To educate your children and family members.

It is so easy to join the cause and to speak about against disability slurs, not just the r-word by joining Stop Disability Slurs.  http://www.facebook.com/stopdisbilityslurs or follow us on Twitter @SDSMovement.

To learn more about this day of Action  (sorry about the advertisement, it happened when I pasted the article to this post.):

March Brings Annual Day of Action to Stop the R-Word: Mother’s Perspective

By Deborah Braconnier, Yahoo! Contributor Network4 hours, 29 minutes ago

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We all remember the old rhyme, "Sticks and stones can break my bones, but words will never hurt me." Well, we all know this was just something our parents told us when things were rough and kids were picking on us. However, we all now know that this is not the case. Words can be hurtful and can do a lot of damage. This is the message behind the Special Olympics campaign to end the use of the R-word (retard or retarded).

The campaign, known as "Spread the Word to End the Word," has spread all over schools, college campuses and even the corporate world. The website called "R-Word" was started back in 2008 by the Special Olympics to combat the usage of the word in everyday language.

AdChoices

The idea of the site is to provide a place where people can come and pledge to eliminate the use of this derogatory term. As of the time this article was written, the site had 239,024 online pledges.

Now, the term retarded was not always known as a derogatory term. It began as a medical term (mental retardation) to describe individuals with intellectual disabilities. As someone who worked with disabled individuals for many years (I was a Special Olympics coach 20 years ago), the term was used frequently back then. However, over the years, the word became synonymous with "dumb" or "stupid" and was used as a derogatory term by people referring to people without a clinical diagnosis of mental retardation.

This year, March 7, 2012 will be the annual awareness day for the campaign. Many schools and organizations have events planned across the country. This is a great time for everyone to visit the site and take the pledge. While we have seen children commit suicide all over the country over the last few years due to name-calling and bullying, ending terms like the r-word is essential.

Unfortunately, that old rhyme was wrong and these words can do a lot more damage than we ever thought was possible. My oldest son was a part of this program at his high school last year before he graduated and I believe it is a campaign that should be encouraged in all schools. While many people don't even realize they use the term and don't mean anything by it, it can cause pain to others. Take the time to visit the site today and sign the pledge. Let's do our part to eliminate the hate this year.

Deborah Braconnier is a former athlete and 20 year medical professional. Working now as a freelance writer and Featured Contributor for NFL and Olympics, she brings her love for both sports and the medical field together in her writing. Follow here on Twitter @fwcdeborah.