HIT ICE!!

Elise LOVES Hockey!!! I mean LOOOOVES Hockey!! We went to a Gwinnett Gladiators game last year and I don't think she tore her eyes from the ice. Whenever someone body checked another player she would cheer "Hit Ice!", eyes alight! She got to meet the mascot, Maximus, the Gladiator's Lion and it was magic.

Scroll forward a bit, and she enjoys watching hockey on TV. She would eat popcorn and keep her attention entirely focused.

At first I thought it was the ice that had such a power over her. No. Nope. Nuh-uh. I turned on figure skating and Amelia was coo-ing instantaneously over the princess clothes and the pretty music. Elise looked terribly perplexed and asked "Stick?" Nope, no sticks. They just dance. She snorted in disgust and left in a huff. She takes figure skating as a personal affront and refuses to stay in the same room when it is on. I am quite serious.

We went again to a Gladiator's game this year, and took my parents. Elise cheered and whooped whenever there were body checks and the hoots of approval went up for the fights. (What's a hockey game without fights??)

Maximus was too far away for us to make it to shake his paw this time, and Elise was SO disappointed. She loves him and, if possible, was even more excited to see him than the game. I was so thankful that it was $5 kids jersey night, and I grabbed one for her. She has slept in it almost every night since.

I wish you could see her watching hockey. She is such a pleasure to watch. Even if you didn't like hockey, if you went with Elise I guarantee that you, too, would be cheering, "Go, HIT, ICE!!!" Her excitement is like a force field, lighting up everyone with its power!!

Brag aBout - Laura

Brag aBout Form

Get Loud about being Proud!

My child with DS, first name and age: Donna Marie, 5 year old.

Any other kids and their ages: Christopher, 4 years old.

Quickie medical wrap sheet: Bilateral ear tubes, adenoidectomy and tonsillectomy at age 2. ASD repaired via cardiac cath using an Amplatzer device at age 4.

Recent goals attained? Finally started to walk independently at age 3.5. Still not talking.

Any fun stories that you'd like to share? Donna Marie loves to march around the house with her purse like a real little lady. She also enjoys watching Yo Gabba Gabba. (Watching TV is a new interest for her.) Her little brother adores her and copies everything she does...including stealing her purse and also marching around the house with it just like she does. (I have heard him say, "Yeah, I know it's a bit too girly for me, but I like to share.") While Christopher has deep love and admiration for his big sister, Donna Marie just barely tolerates her little brother ;)

Love,
Laura

My Competitors, My Peers, My Friends

I begged you to nominate me for the Reader's Choice Awards because I was hoping that there would be a list of entries and I might get some traffic. I was shocked that enough of you thought enough of my blog to get me to the top of the list! I do my blog to offer camaraderie, support, a glimpse of hope for a new and unexpected future, and to share with those who aren't living my life. I personally scan the blogs followed by my favorite blog authors to find new blogs for hope for OUR future with Elise. When I see awards on their side-bars, I will certainly give them more of my attention to see what others see.

At the risk of selling your votes to my competitors, I decided that I'd spotlight the blogs up against me, because they are really quality.

A blog that I've been following for about 6 months is one of the other finalists. The Garden of Eagan, is an honest perspective of raising a daughter with Down Syndrome. Angela is 14. They've just adopted a boy from Europe, and she's chronicled that adoption process as well. Leah, the author, spent hours talking to me on the phone, a stranger, as a friend offering personal experiences and advice. Her blog is no different than herself, like a hug on a computer page. I have to echo the comment that another one of her readers posted, she helps us, coming behind, to"frame my vision for my daughter".

I only discovered these other blogs through the voting and spotlights. I am following them now, and I am enjoying the education, the joy and open-armed-ness of them all.

eSpecially Ben is a warm, sharing celebratory blog. The author, Vanessa, shares the struggles of raising a son with special needs, and offers support and joy.

Fighting Monsters with Rubber Swords is a blog that focuses of the practicality and honesty of dealing with bilateral perisylvian polymicrogyria. The author is a father who focuses on the positive without sacrificing the truth.

Hartley's Life with 3 Boys is written by the mother of, you guessed it, 3 boys. One has autism and bipolar, one has *just* autism. She, too, uses my mantra, "you are not alone". She shares, with laughter, the inner workings of her life. She offers practical advice of what works for her and actively advocates for her sons and others, too.

I have been very free recommending other blogs, aiding others to share their stories, and sending you to great sites and decided that I should not stop now. So, do check out these great blogs...but I hope you'll still vote for me... HEY! I've always promised honesty!!!! :)

Haircuts- The Drama, The Trauma

I was given hair-cutting lessons, a pair of scissors, and a pair of clippers for my wedding shower from my mother-in-law. I have cut Ethan's hair since we were engaged. I've cut the kids' hair from the time of their first hair cut, with maybe 2 exceptions.

It has saved me a considerable amount of money. I never minded and while the midnight realization of needing a hair cut is enough to give you an anuerism, it is certainly more practical than trying to schedule a hair cut with Buffy the day of something important.

When I had daughters, I truly believed that my hair-cutting services would be needed much less than my son or husband and they would be virtually stress free. Wow, was I wrong.

My poor girls do not have the luscious locks required for the long, no cut, braided, DONE hair. They ALL have Dandelion Hair, which results in me keeping their hair shorter than I would like to. Charlotte is still baby wiggly, so it takes a little longer to trim her bangs than it will in a couple of years. Amelia wants to see what I'm doing as I do it, with demands and requests as I'm cutting it, but she sits pretty still.

Elise asks that I cut her hair. She knows that it makes me brushing her hair in the morning better for her. However, Elise growls, spits, and thrashes as I cut. Stressful doesn't begin to cover the nausea that a haircut creates. She has a lot of sensory defensiveness and the feel of her hair being tight and then all of a sudden loose against the scissors and her scalp makes her crazy. As she thrashes, the hair that is cut fluffs out into the room, gets on her skin, and she sniffs it up her nose...did I mention that she has sensory issues?? To cut her hair, I have to use hair cutting scissors. You know they are pointy and stuff, right?? I live in desperate fear that I will cut her, poke her, or stab her somehow in these hair sessions. I have thought about taking her to a salon for a hair cut. I'm betting that they wouldn't finish the job,though, and that no amount of money would make them do it.

SO, I do it. I do it because one day every couple of months makes the morning drama of hair-brushing a little easier and the twice weekly hair washing shorter and there is less gnashing of teeth, and less wailing.

But, boy, what I wouldn't give to have safety scissors for cutting her hair!!!!!

Giveaway!! Angel Unaware by Dale Evans Rogers

Well, you can't look inside...but I wanted a picture...HERE is the Amazon link to this book...

I am thrilled to say that this book is BACK IN PRINT!!! I bought about 15 copies when Elise was 2 because it had been taken completely out of print. I wanted to give it as gifts! I love this book. It is the story of Dale Evans and Roy Rogers' daughter, Robin, who had been born with Down Syndrome. They were advised to put her in an institution, but they chose to take her home and love her. This was during a time where the general acceptence of babies with special needs was nil. I loved Dale Evans and Roy Roger before, and when I discovered this fact and read this book, I loved them even more.

This is Robin's story, told from her perspective, from Heaven.

I am offering 2 copies for giveaway.

To enter the giveaway:

1) Comment here or on Just a Little Downsy's Facebook page

2) Post a link to this giveaway on your blog or Facebook, share your link

* Each can be done daily!!*

The giveaway ends March 21st...Good luck!!! :)

Militant...Maybe...

I was accused today of being militant for my child's rights in the school system. This was, interestingly, after their rights had been seriously and legally encroached on.

Maybe I am hyper-aggressive for my child's rights. Maybe it's for good reason. "My name is Tiffany, I am a former teacher...it's been 6 years since my last job..." No, just kidding, but sometimes it's as good an excuse as any to see monsters in the shadows.

I was actually an inclusion teacher, to boot. I have seen teachers bump parents into "suggesting" options for their child, that they came in 180 degrees from wanting. I have seen teachers leverage with fear so they don't actually SAY that they don't want a certain kid in certain places, but they were, I assure you, in charge of the direction that a meeting went in. I admit, that I have actually done it myself. I am confident when I say that I never did it without the child's best interest in mind, but I have seen teachers do it for less than noble reasons, too.

Please excuse me if I go in to every single IEP (Individualized Education Plan) IN my fighting stance. I have seen the worst. I have been in the teacher's place. I have been in the parents' place. I have had teachers try to bump me from my plans to insist on the least restrictive environment for my child. I have had fear put to leverage on me. I have almost tabled several meetings. It is my right to stop a meeting when it is not going in the direction that I want...so that I can regroup and come back with proof, with an advocate, or with an advisor.

I have been pleasantly surprised with Elise's new school. I have not had to fight for most of the things that I wanted...that I had to fight for tooth-and-nail for in other settings. I cannot tell you how disconcerting it is to have had things handed to me on a silver platter that I had to throw my weight around for in the past. It is a change I certainly welcome.

Although right now I am having an easy moment, do not think that I have relaxed my vigilance. Do not think that I will ever allow the IDEA to be breached while I am on the lookout. I know that it is a human desire to use the EASY button in life...and I know that educators are equally inclined to use it!

If you are a teacher, please understand that it is not YOU I am fighting. Please know that I respect you. Please understand that YOU handle children's opportunities, and your decisions that you make while you are craving an easy year, will have far-reaching effects on these students' futures.

If you are a parent, I beg you, please keep the paranoia. PLEASE read the million page packet of parental rights you are offered at every meeting. Keep at least one, and READ THE DARN THING FROM FRONT TO BACK AT LEAST ONCE!!!! Please, you are the guardian of your precious child's destiny, do not allow one [lazy, selfish, tired, harried, mean-spirited, people-pleasing...you pick one] person sacrifice future options. I mean it. An open future is the biggest gift that you can give your child, special or typical.

Thanks for listening to me rant, but please understand that this militant, freaky, passionate, paranoid tirade is based in wanting and demanding the best, from all the parties involved. Honest.

"Acceptance"

HAD to share this neat STORY from Band of Angels! I love stories like this...it makes me hold on to the hope that Elise will impact others positively...whatever struggles she is having...

Cheerleaders have the power to encourage in so many ways...do take the time to read it!

ADHD the decision that keeps deciding....

SO, for those who are curious, yes, it is very definite that Elise has ADHD. She has responded properly to the medication that she was put on. That is currently not at question.

You know how some disabilities have very clear-cut responses to very clear-cut symptomology? Yeah, me either. Before I entered this world, I believed that medicine was a very concise science. There would be a problem, and there would the "how to fix it" answer laid all out...Since entering this world, I have realized that that is more the exception than the rule. ADHD is no different, it's a big game of trial and error.

The medication that she was put on 4 weeks ago was amazing. It changed her behavior almost at once. The flaw was that it made her VERY sleepy. It slowly abated, not so much that it stopped making her sleepy, but that it did not make her sleepy at school, just after. It made her so sleepy that we were unable to up the dosage as the weeks progressed. Unfortunately, the rest of her body adjusted to the medication, and her impulsiveness and aggression came back...but because the side-effects were still in such strong effect, we couldn't adjust the dosage without increasing the side-effects. In short, this first medicine is a "no-go".

Today we went back to the neurologist, for him to say almost exactly what I had concluded above. While it makes me feel pretty smart, I wish he knew more than I do. You know??

The neuro asked me if we wanted to pursue the attention portion of her diagnosis or the impulsivity/aggression portion. This was a no-brainer. The whole reason our hand was tipped for this diagnosis was because of the second. SO we are on another trial prescription...this drug is one that was made for WHOLE other reasons than to treat ADHD. It was originally made to treat psychotic episodes, Schizophrenia, Tourettes, and various forms of bi-polar. The big baddies that you read about in abnormal psyche. Not really things you want to hear about in the same sentence as your kid. I mean, REALLY?? Ack!

I put in a call to my pediatrician and my brother-in-law [he's a pharmacist (gotta love insider information!)] and made sure that it was still okay to consider a trial run. They both said yes, as long as I am hawk-like in following the side-effects...no problem, there. For the record, I virtually never accept one doctor's say-so. If you are in medicine, I am your worst nightmare. You're welcome. :) I've been know to call conflicting doctors, multiple pharmacists, and other in-the-trenches parents (yes, even those that I don't actually know!) until I feel comfortable with a decision.

There you go. You are now just as smart as me. Or just as unimpressed as me...I wish there was a silver bullet, a magic pill. There isn't. But, I trust those who are wandering this forest with me, which is all you can really ask for, right?

Conclusively? All I am looking for here is something that will buy us a few years until her maturity catches up. Once she has some self-control and some real communication skills, I believe that we will be able to address what really needs to be addressed. Until then, we are just snatching moments and binding them together to help her make friends, set up her support systems, settle down to learn, and have a framework for the rest of her life. We're just fighting for her future, here. Which I still say is pretty bright! :)

Happy Valentine's Day, For Elise

I just wanted to post a little something in honor of my girl today.



I treasure her, and her name was chosen, CLAIMED on purpose!

Miraculous Story!

THIS is such an amazing story!! Please take the time to read of God's gift to this family!

Have I Mentioned That You are the Coolest Followers EVER???

Seriously!!!!! I gave you NO warning to vote me in for the Reader's Choice Awards!! But you went and got me a finalist position!!!! You are AMAZING!!! Thank you!!!

I am a top 5 finalist for the Special Needs Blogs on About.com!!! PLEASE go over there and VOTE!!!!! Go vote right HERE!!!! You can vote once a day from today until March 8!

Even if I don't win, I am SOOO excited and humbled that you got me here!! Thank you SO much!!!

The Future!!

This is an amazing story!!! It's stories like THIS that give me hope for Elise's future!!!! The opportunities are opening back up!!!

Right on Time, for once...

Elise sat, assisted, at 10 months. She started cruising the furniture at 21 months. She, now at 8, has a vocabulary of a delayed 3 year old.

While some of my friends with kids that have Downs have had minimal health problems, and their delays are mere delays, Elise is kicking some pretty substantial delays. Like, I don't think she's hit one single developmental milestone on time yet. Until now.

I'm going to go out on a limb here...You know how stereotypes are often based in fact? Have you further heard the myth about the little girls, the world over, who ask for a pony for their birthday or Christmas? Girls love horses. In my experience, it is only how much and what age. If boys are interested in horses, they view them as living cars, and obsess about their speed and power, but they are a vehicle, not a passion.

I was about 8 when I fell in love with Breyer horses. I watched the Black Stallion for movie night at the zoo, and fantasized about horses...I read all the Marguerite Henry and Walter Farley books and anything I could get that had "horse" in the title. I adored horses, and knew everything about them, but had only watched them from afar or rode them while led for a pony ride at the horse farm across the street from my house. The tiny fact that I did not have actual, real-life experience did not dampen the love affair...

Elise has had experience with horses, and has since she was about 3. As soon as she X-rayed "clean" for AAI, I had her signed up for hippotherapy. She loves it, thrives, and works harder for her horse than any therapist on the planet. We are lucky enough to live in a neighborhood that allows horses, and are in a very rural area, with horses EVERYWHERE we go. She always admires them, waves at them, counts them, and watches them at every chance she gets. (I love it, myself!)

Elise, age 4, with Gus

She tends to enjoy animated movies more than live action. (Although, she loves the new Charlotte's Web.) This weekend, she found The Black Stallion. And watched it twice, without breathing, I think, while her sisters napped. Then proceeded on to Dreamer that night. I admit that I allowed it, simply because I had never seen her watch live action with that kind of attention, and I had a lot of things that I needed to do without "help".

She discovered Breyer horses this year, too. She organized her tiny herd for HOURS on our snow days. She made families, had some make friends, and had some fight...it was how other kids play dolls. Then she would just sort them...some are actual Breyers, some are tiny, some are big, and some are varying forms of knock-off molded plastic horses. She divvied them up accordingly after the relationships got out of hand! :) They are the first toys that she has played with that she has actually PLAYED with. She has only played independently with her American Girl doll and the minis before, but it only entailed dressing and undressing. The horses are the first true "play".

So, I just had to post a public celebration of her first on-time developmental milestone. The obsession with horses. The revelling in model horses. The PLAYING!! The appreciation of beautiful horse movies. Sounds like an excuse to break out the National Velvet, The Man from Snowy River, and maybe throwing a Kentucky Derby Party doesn't it???

Hearts

A friend of mine celebrated her daughter's Happy Heart Day today. It got me to thinking of Elise's. The eighth anniversary of Elise's open heart surgery will be on Sunday.

As I've said before, I am highly amused about how the "awareness" months lined up for Elise. And how God was amazing in showing me himself that week...

As incredibly terrifying that week was, it was a flash of God's vision. I've always been struck that God never shows you the WHOLE path set before you. I believe that he KNOWS that you would panic and NEVER see the beauty he has planned. In Psalm 119:105, he only offers a light to your feet. I would have to say that week was to us, that thunderclap with lightning that showed a tiny glimpse of the path ahead.

I have never been one to hide scars or be ashamed of them. And every single time I see the artificial clevage caused by her open-heart surgery scar, I celebrate the gift of that week. I feel like the gift of her heart was an opening of mine, too. Nothing ever felt the same after that week. It was never as dark again. My hands were opened, receiving and offering back the gift of Elise's magic. My eyes were opened to the treasure she was, the continuous gift she would be.

Scars can look like they were caused by tragic events, but sometimes, scars are evidence of a repair made. In Elise's case, it was a ASD, VSD, Mitral Valve repair. In my case, it was pride of control? Complacency? The desire of ordinary? I don't know, I think I learn more about it everyday. I know that the repair has caused me a heightened awareness of the greatness of God, a passion to see more of his light, a desire to hunt his lightning, a joy to walk his path.

Readers' Choice Awards

I am fresh out of the gate with this blog. It is the new baby on the blog block, but there is something called the Readers' Choice Awards. They currently are taking nominations for the Favorite Special Needs Blog. I would like to ask if you could nominate me and this blog. Not because I think I am such an amazing blog, but since I have tried to enlist guest bloggers to come on and share their stories, and really make a support circle, the more people who know about it, the bigger the support circle, right?

I found out about this, this afternoon from a friend who has the seniority to win...so I went off to support her....and then got to thinking...maybe if I got nominated, then I could get more readers, if I get more readers, then I could possibly get more guest bloggers and the circle of folks who can share their experiences and be encouraged "that they are not alone" will widen.

Only flaw, the nominations close TONIGHT at 11:59 pm. So, scoot over there and help me get more voices of experience...PLEASE? Pretty please?

Here is the link to a nomination form.

Here is the link to the required qualifications for the nomination.

While I do run guest blog spots, I am the primary contributor and most of the posts are my very own thoughts and reflections. I share my experiences about my life with Elise (who qualifies as a child who has special needs because she has Down Syndrome, significant developmental delays, and many medical issues), past and present. I hope that my experiences are helpful to those just starting out, and those wondering if the craziness is just in their lives.

Thanks so much!!

Review of Gary's Book (so you will throw elbows for the giveaway!)

So I put up this giveaway and am generally shocked that I don't have 20 entries right now...and then it occurred to me that you may be looking at this book, thinking, "I am fine with my kid now, thanks so much. I don't need to wallow in the struggle anymore."

Which, believe me, I totally get. But let me say this really quick. You don't deal with the next 50 years right off the bat. You deal with "Now" every few years or so. When changes (or the lack thereof) come, you will regroup. I promise, in big ways and little ways, on purpose or because your life forces you to.

BUT, I digress as usual. This is not a weepy, what do I do now, I'm so depressed book. It gives practical support on how to be the best parent for your child as you can be, and this advice stretches across the years.

I'm going to totally cheat and tell you the titles of the chapter and a quickie summary of their content. K? That way you will want to enter or go buy a bunch for yourself and friends... :)

Gary based this off of a list of verbs that she found to most encompass our lives as parents with kids who have Down Syndrome.

1. Grieve-
Um, self-explanatory. But this explains why it is an important component of growth and the ability to celebrate!
2. Research -
This is a fantastic list of resources that will aid you in learning how to be the best parent that you can be. How you can be therapist, advocate, medical professional, teacher, and proactive parent; in the manner that empowers you and helps YOU to make choices for your child, and not get pushed around by "The System".
3. Incorporate-
(I loved this chapter.) It shares how to make Down Syndrome a part of your life, and not let take it over. She even brings in how it impacted her other children and their view of it.
4. Promote-
Once it is a beautiful part of your life, she offers suggestions on how to share it's beauty with others.
5. Include-
Advice on how to include "normal" in the "special" world and vice versa.
6. Understand-
Support and advice on how to understand and support your child with Down Syndrome. Also included, is how to understand "outsiders" and how to educate them and help them help you.
7. Advocate-
Practical advice on how and when to fight for your child's rights and to teach them how to fight for themselves.
8. Expect the Best-
Shouldn't you live your life this way? How to look for it and expect it.
9. Practice Healthy Scepticism-
Again, great advice. YOU are the parent, do not live your lives letting others tell you what to expect.
10. Plan-
Practically, plan for the day-to-day and plan for the future so you do not drift aimlessly.
11. Celebrate-
DO IT!!! :)

Nothing Wrong

When Elise was fairly new, I felt that I was constantly being watched and OBSERVED as a new parent to a child with special needs. I don't really know now, how constant that actually was. Everybody looks at new babies. Are they all questioning what is "wrong" with your child? No, probably not.

Everyone I knew was adjusting to our new life, too. And the weight of people feeling sorry for us was VERY heavy there for a while. Like oppressively so.

HOWEVER, there are those that do judge. I had more than a few people eye Elise in her baby bucket carrier, and some brave ones actually asked what was "wrong" with my baby. At first, I accepted this, and answered their questions. After a while, this got old, and so I would answer "nothing, she's just tired".

But one day, I was at the end of my rope emotionally, and some ugly little lady asked me what was "wrong" with my baby, and I caught my breath and shrieked "What???? I don't know!!! Do you think she is sick? Do you think she has Downs? What????" She was horrified and retreated, and I had a nice, if hysterical laugh over her panic....It was ever so freeing. In retrospect, I fluctuate between ashamed of my behavior, and thinking it pretty much served her right.

I got Norah Jones' album Come Away With Me along with everyone else in early 2002 and I loved it. When I found that I was going to have a girl, I would listen to the song "Seven Years" and imagine making dandelion and daisy chains in the sunshine with my little girl...

Then when Elise was born, I would listen to that song with a dagger in my heart, mourning the normal. The "nothing wrong" in the song seemed a taunt, rather than a promise. I hated it. And gave up listening to this album for a while...

Elise found it a few months back and decided that she liked it and wanted to listen to the CD as she went to sleep. And I listened to the words to "Seven Years" again. And I found myself thinking that it applied even more to her than I ever thought it would. She is happy and there is nothing WRONG with her. She is perfectly her. And that is all there is to it.