Thursday, December 13, 2012

Beat Down and Miracles

I  have been struggling...I have overheard entirely too many ugly things said about my girl several places that I was sad to hear...  I admit, although some were a surprise, some were just a confirmation of what I suspected.  I witnessed a little girl that Elise was desperately trying to talk to, get out of the pool, circle it, and get in on the other side after giving Elise a look usually reserved for gum that you find on the bottom of your shoe...  I have been saddened by the prejudice that has been passed down from generation to generation.  I am increasingly burdened by the idea, that while skin color is becoming less and less of a debilitation, disabilities are not feeling nearly as some circles, I feel like less than perfection is positively scorned...and the extrapolation is even being put on the parents...

But I am pleased to say, that there have been a couple of moments of pure, unadulterated acceptance, that made my heart cry with relief...that made the barrage of disgust that I felt like I was drowning under, push back like the Red Sea for Moses...

One, an adult who was clearly disconcerted by being addressed by Elise, actually held a 5 minute conversation in the isle of Target.  Elise liked her shirt, and had one like it, and Elise attempted to tell her...  And this woman, actually attempted to understand.  And when I was forced to translate Elise's garbled words, she looked at Elise and answered HER, not me (which is what many people attempt to do)!  Elise was so pleased with the interaction, it has come up twice.  And she insisted on wearing the shirt that "matched" that lady's a few days later.....

On Monday, there was a 4 year old that played "whales and mermaids" with her in the pool...for an hour...and talked with Elise like a house afire...and did not ONCE ask for a translation...and they had a ball.  It was obviously a learned acceptance, because her little brother and mother were just as warm and accepting.  Upon leaving, she told Elise that she would play with her next time and I absolutely believe her.  I also learned that this little girl's name was Gracie.  And I definitely needed a few moments of Grace...

Do not underestimate the value of a few minutes of effort on your part...or your children's...

Friday, November 30, 2012

Politics. And the CRPD

Okay.  There are some things that have folks murmuring concerning special needs and the UN.  I am going to answer this in a very short, to the point version.

Here is the public version that you can view.
 Doesn't look terribly bad or scary, does it?

So why is Santorum against it?  I mean he has a child with severe and profound needs.  You would think that he should head the parade, right?

It comes down to this in a nutshell.  One of the United States' biggest contributions to the world at large is human rights.  They have had their own flies-in-the-ointment and skeletons, but over-arching, they have gotten spread too thin, militarily and financially, in helping and protecting groups of people who could not help themselves.  This includes people with disabilities.

But in offering this and signing on for United Nations Convention on the Rights of Persons with Disabilities (CRPD) , we are effectively giving away more of our control over our own country.

Especially in our rights regarding our children.  Most especially in our rights regarding our children with disabilities.

We are handing over the reigns of these decisions to countries that we do NOT have a voice in, that we cannot vote out, and that have a history of human rights violations.  In their past, and in their present!

This is currently going on in countries that are members in the UN.

I am 100% sure that I don't want nations that are okay with this involved with my choices concerning my children.

If we sign on to this, we are not helping children in any other country.  It only applies to our own.  And these laws will supercede our own national laws.

So.  I am personally asking my senators to vote against this.  Not because I do not want my child protected, but because I do not want people who are not me to make decisions about what is best for my child.  I have seen teachers who see my child everyday make poor decisions about what would be best for my child.  I certainly do not want somebody who not only does not know what my child's best interests are, but who could utilize my child in a political maneuver. 

And I would have zero recourse.

And that is that.

Holidays. Or, as I like to call it, Combat Fatigue.

I was thinking, after several incidents over Thanksgiving, if we have ever had a holiday that has not imploded with stress, since having Elise...and I am not sure if we have...not that they have not been joyful and held with a strangle-hold, wresting the good memories out of them...but they have all been steeped with some variation on a theme of them not as they "should be"...

This has only escalated with Charlotte's food allergies.  I had to make an entire Thanksgiving meal to bring with us that was Charlotte-safe.  The days of bringing one or two items is completely past...

But, far greater than that inconvenience, as I overheard conversations in which my precious Elise was eviscerated, by family and family friends, I realized that all my fears were valid.  The days when she was little and desperately cute, are past.  Now she is big, and not cute enough to cover her different-ness.  She cannot communicate with those not making the effort.  And those are fewer with each passing year... 

Now, we have the gaping problem that she is not a peer and they don't really want her to be.  She reacts by trying to insert herself in the situation.  They react by looking at her like she is a disgusting alien.  She reacts by trying to "punish" them.  Then all the parents try to protect their precious babies.  And she is left to look like the Monster that Ate Tokyo.  And she is still left out.  And she is still angry and sad.

The truly tragic part of this, is that her sister is one of Them, now.  The second that Amelia mixes with them, she tries to separate herself from Elise.  Which makes Elise furious.  I had to jerk a verbal knot in Amelia's tail when she initiated the verbal scorn, which the others were only too quick to join...and I had to pull Elise up short in her attempt to truly hurt Amelia physically for her choices...and Elise does not forget.  If she cannot catch Amelia in the moment, she will bide her time and catch her in the kitchen for breakfast or in the car, as they sit next to each other.

And so, I spend the entire week before the holiday, worrying, and trying to trouble-shoot.  I spend the week of, trying to protect and prevent.  I spend the week after, trying to mediate and heal Amelia's injuries and Elise's heartbreak.  And the week after that, dreading the next holiday get together.

I know it is a stage.  I am sure that it will pass, but in the mean time it scorches my soul.

I cannot allow Amelia to behave in this manner.  I cannot allow Elise to behave in this manner.  I cannot allow them to be together to protect them both from each other.  But I cannot fix this either.  I have to pray and wait.  And now I deal with what is feeling more and more like Post Traumatic Stress Disorder, or the even more telling "battle fatigue".  I wake clenching my jaw, have nightmares, and am up 20 times a night, I revisit ulcers and esophageal spasms, and various other issues with stress.

If it crosses your mind, you can help ease my holiday stress syndrome. (And anyone who has kids with special needs!)

Do not automatically assume everything is Elise's fault.  It really may not be.  I know she hits.  But I also know that it is not always her starting things.  Kids are kids.  I've seen several incidents, where someone sees the tale end of an altercation, and start in on Elise...and I watched the entire thing, trying to get over there to stop it...and it was NOT her.

Please talk to your kids before spending time with Elise, and ask them to try to understand her...remind them, that they can ask questions and repeat what they think she is saying, and see if she agrees.  Remind them that they can ask her to come with them to me, and ask what she is saying....or even Amelia.  Amelia likes the status in being a translator...and it forces a certain measure of bonding and support between them...which aids their relationship.

If you are an adult, you can become a rock star, by inviting Elise to sit with you, read to her for a few moments, tell you about her holidays, or admire her games.  When she feels valued and special, her patience with other kids increases.  We have a dear friend named Scott, who Elise is infatuated with, because he ALWAYS listens to her like she is the most fascinating person, ever.  He talks to her and gets her crackers.  He is an adult, but he never fails to make her feel loved...and she is always on her best behavior when he is around, because she wants to make him "happy".  And he always tries to translate her for his kids....which makes them less afraid of her, and more accepting.  But he also never hesitates to tell her "no" if she is pushing limits.

Oh, and DO NOT FEED kids without their parents' okay...Charlotte is allergic to everything...and these allergies make her mouth swell and spiral out of emotional control.  The last thing any parent needs is their child weeping in the floor over toilet paper because you were being "helpful" and didn't take 30 seconds to make sure someone was allowed to eat something.  And yes, the toilet paper incident really did happen a few weeks ago.  I pulled off 3 squares instead of 4 or 5 and Charlotte had the queen of all nutty fits...  I am having tags and a shirt printed up for this year's holiday parties!

And if I get distracted and short-tempered, please love me anyway.  I swear I will be nicer after the kids are in bed...or at least after the New Year...

Tuesday, November 27, 2012

Thankfulness Project: Heather and Gabi

I am very blessed to know Heather and Gabi in real life.  I get to see her giddy smile and hug her soft little body!  I treasure those snatched moments and value Heather's friendship.  Please rejoice with us over Gabi's triumphs this year!!

My Gabi will be three at the end of January. This year has been full of wonderful milestones but the biggest of them is her walking! She took her first step on March 20th. I never thought I'd be so excited. It was still a while before she progressed but she eventually got braver and braver. We went to the beach at the end of June and that was all it took. Barefoot in the sand my baby girl went from a few steps to running! She made her way around that beach and stopped to make friends with everyone, just like she does everywhere she goes! :). Now she is everywhere and into everything, which at times is frustrating, but I couldn't be happier or more proud of her accomplishments.

Tuesday, November 20, 2012

The Talk Box Possiblity

I have a love/hate relationship with NPR.  I LOVE the music specials...the classical, the Celtic nights, the yodeling specials...all the unique music that they play, that you really won't get anywhere else unless you buy it specifically...but the exceedingly skewed news raises my blood-pressure every a matter of fact, anything that involves actually TALKING on NPR raises my blood pressure.  I don't like the affected manner that they speak in.  It feels pompous and condescending...something I couldn't even stand when I was a kid.  It makes me mad...and, frankly, discredits what is being said much of the time, too....that they feel like only they really understand what life is really all about and they are doing us a favor even telling us, because we won't understand anyway...

I accidentally listened to a promotional on a book the other was:  "Far From the Tree" by Andrew Solomon.

And although I was cringing at his voice, and some of the language he was using, I unwillingly found myself agreeing much of what he said...especially with a comment (not word for word): "Most parents have said the same thing in variation:  While they would take away their child's disability in a second, to ease the lives of their children with Down Syndrome or Autism or CP, etc, they are thankful for their own perspective change..." 

I am planning on listening to (or reading the transcript of, if I luck out!!) the rest of the promotion...and looking for the book to see if I agree with anything else, because I am intrigued with the premise...

But it's true.  I am thankful for my own perspective change.  I appreciate the little things so much more!  But I know that Down Syndrome is hard on Elise.  I know that it will only get worse.  I know that it will prevent her from having freedom, from having opportunities, from relationships...I hurt knowing that.

Elise went down to the hospital for her usual annual doctors' appointments, Cardiology, Endocrinology, and Oncology (the results of all that is another story)...and we added a Communication Technology see if she was a good candidate for a speech device.

I've said before, that Elise is really beginning to feel the effects of not being able to talk/communicate to others clearly.  We are seeing more frustration, anger, and depression.  She cries when people don't understand, she pitches fits when people don't understand enough to do what she is talking about...

Well, she is a prime candidate...and so now we move to the trial stage...because, although we could start the order process now, whatever device we choose will be ours, with no change, for five we want to make sure that the device is a good fit.

And how does this intake tie into the first bit?

Because Elise was sick yesterday.  Or this whole week really.  She has been "off" and complaining of head and stomach aches...and emotionally unstable.  We are struggling to understand what is going on.  Is she unhappy at school?  Is she sick?  The final straw was yesterday when she refused to eat.  If you know our battles, not eating has NEVER figured into that.  I even tried to make her Ramen and Pizza.  And she passed.  SO NOT good.

I wish she could talk.  It was such an incredible high point last year when she could finally tell us what hurt, when she was sick.  I always felt like a crazy woman when I took her to the doctor because she was rubbing her head in the carpet.  The pediatric nurses don't really view that as a viable reason to see someone as a sick visit...but it usually was indicative of an ear-infection.  Sore feet?  Strep throat.  Not even making this up.

I am looking forward to the device aiding her explanations and stories.  Because there are a lot of them locked up behind her lack of speech.  She is 2-4 years older in receptive language than expressive.  That's a big dadgum gap.

Will this help her in emotional expression?  I hope so.  But I don't really know.  Does she understand her own emotional state?  I am not confident she does.  That causes the biggest problem in her speech gap.  I know it will come, but it's like a 2 year old who is overtired and reacts by running in circles and weeping...and they don't even realize they are tired.  That's where we are, really...

We are emotionally overtired...all of us....

I can't wait for the device support.  Even if it sounds like a Mr Spell

And she doesn't turn out to be Stephen Hawking

If we could get some more explanations, just a little bit more, then we can talk.  If we could even get 3 more words in a you know how much more of the universe that would open to us?? 
It almost blows my mind.  It is like Stephen Hawking's perspective on the universe compared to Mr Spell. 

Thanksgiving Project: Anna and Ellie Bear

Personally, I think Anna is being too generous about me...but I thank her for the compliment!  Far more than that, I thank her for being able to re-live Elise's babyhood and toddlerhood.  Everytime I peek at her blog, I see her firecracker of a Bear reliving ALL of Elise's positives with her own personal spin on them!!  I love to see it!!  I love her pictures of Ellie, I love the celebration!  I am ever enchanted by the Ellie Bellie Bear!!  I cannot send you to her blog fast enough!!  In the meantime, here is a tiny sample of why The Bear's blog is so magical!!

When Tiffany asked me to write a guest post, I was thrilled, honored, and scared (she is a big news in the bloggersphere!).  You see, Tiffany's blog was one of the very first blogs I started to devour after having my daughter Ellie.  I wanted to catch a glimpse into the future.  To know that all would be okay.

It has been 3 years and I can honestly tell you that it is okay.  In fact, it is wonderful.  There are trials, of course.  Yet, with great challenges, greatness is achieved.  We celebrate success and determination.  What may see small to those Tiffany refers to as "Outlanders", may be huge for our children with designer genes.  With each milestone, with each accomplishment, we celebrate.

This year, I have so much to be thankful for.  I have witnessed my daughter grow leaps and bounds.  Both physically (yes, she is The Chunky Chicken for good reason!) and developmentally.  She is motivated and extremely stubborn.  She can pitch a temper tantrum worthy of an Oscar.  She is sassy and a drama queen (you should hear her "fake" cry for it is quite impressive and hilarious).  She is my go-getter and my rockstar.  

Until February of this past year, my little girl was predominantly silent.  She could say "dada" and make a few other sounds, but otherwise she would sit, er climb/run, silently.  Screaming was her preferred form of communication and it left the two of us rather frustrated and frazzled.  Then, it was as though a light-switch went off.  She started humming while playing and occasionally, a babble would sneak out.  She said "mama" and actually meant ME, her mommy.  My big mama bear heart wept with joy and gratitude upon hearing that sweet "mama".

Ellie also started to say "ball", "bear", "oh yeah", and "yay".  Additionally, she learned to point.  Pointing opened up a new world for I could actually figure out what she wanted!  Her signing took off and she was picking up signed faster than me.  Then she started to pair either a vowel sound or a guttural consonant sound with each sign.  My daughter found her voice.

With her new found communication, she began to interact with the world more.  Hearing her utter "mama" when she wanted or needed me.  Witnessing her sign "LOVE" back to me at bedtime.  Blowing kisses and giving high-5s strengthened our bond.  All of these seemingly small things, are huge in our world and I am thankful for each and every kiss, hug, and mama.

In working tirelessly with Ellie in helping her to communicate, my husband discovered that she could sight read several words.  I never expected this at the age of 3.  I always congratulated myself on having high expectations. . . in saying, do not set limits, instead, push them.   Yet, I was blind-sided by this.  My daughter is predominantly nonverbal so how can she read? Shame on me!  Ellie has opened my eyes and made me realize that I was not keeping an open mind to her ever expanding abilities.  She also made me recognize that I was falling back into my old, incorrect assumptions about speech equating intelligence.  It is not!  I know better.  I am thankful that I have such a lovely, talented little girl to remind me of such things.

I suppose I should mention that I am grateful to have the reflexes of a cat.  Ellie is not content to sit about.  She is an avid explorer.  An adventurer.  She is a spider monkey scaling the walls and climbing anything that has a handle, shelf, knob, or rung on it.  She also enjoys chin ups.  She pulls herself up with her arms and then tosses that leg over.  Her gross motor planning is impeccable.  When she first climbed out of her crib, I heard a THUNK followed by a "YAY!" and clapping.  Curious about her latest escapades, I observed on the baby monitor and felt both petrified and proud.  Her dismount from the crib railing was beautiful.  A perfect 10.  Needless to say, the Princess now sleeps on a mattress on the floor surround by pillows.  Yes, I am grateful that my daughter has not broken her neck or shattered her femur due to her impulsive, daring, theatrics.

Every night, completely exhausted from chasing The Bear around, I thank God that Ellie is my daughter.  She is so unbelievably precious and beautiful that it hurts.  She has taught me about patience, hard work, and enjoying day-to-day life in the past 3 years.  I am forever thankful that I have the privilege of being her mother.

Friday, November 16, 2012

Thanksgiving Project 2012: Gary and Alex

I asked a bunch of my friends to brag on their kids' accomplishments.  This is a friend that I have mentioned before because I watch Gary like a hawk, taking notes and cheering for her girl, Alex.  I love her blog and the book she wrote!!  This is what she sent me to "showcase" her daughter's accomplishments and goals for this next year. 

Elise actually always asks if pictures of Alex are of I guess she identifies with her as well...which is good, because Alex is an excellent role model:

Beyond high school

This past June, having earned all the credits necessary to graduate from High School, our 18 year daughter, Alex, did just that. She donned her white cap and gown and proudly accepted her diploma from Basalt High School. As with her older sister, Alex had a graduation party, graduation dinner, and got oodles of presents. And just like her sister, she needed daily reminders to write her thank you notes, some she did and some she has yet to do.

Alex applied to college and was waitlisted in a very competitive program that accepted only 1 in 10 students. She was awarded an interview however, and is currently on the waiting list for the fall of 2013. With this unexpected year off, Alex and I investigated “gap years” as sitting around watching television and playing video games is not our ideal way to spend a year. We talked about goals and dreams and put together the following plan:

Weight loss

Alex needs to lose weight. She has committed to monitoring her food intake and we are working on counting calories.  (lost nine pounds to date)


We had a few work/internship opportunities come up over the summer and Alex decided to pursue one of these. She is working (paid) at the local pizza restaurant one day a week will increase her days in the near future.


Volunteering is very important to Alex, it makes her feel like she is contributing and she gains a lot of self-confidence. Alex is helping out at WindWalkers with two friends once a week.


Like her peers Alex is a life-long learner and has looked over the local community college class schedule. At this point she is interested in art and music classes, and steered away from academics.

Alex has settled in to this routine and is also training for an International Skiing Competition that takes place in January in South Korea. It is a full life, a wonderful life and a remarkable life.

Oh – did I forget to mention Alex has down syndrome? Must be because I keep forgetting….


Friday, November 9, 2012

Thanksgiving Project 2012: Lynn

This is a weird way to jump into the Thankfulness Project.  I actually asked a non-special needs parent to jump it off.  This is why I started this blog.  I wanted those who were "Outlanders" to understand what was going on in my life.  I mean, I didn't exactly draw the cross-hairs on anybody, but I wanted to let folks know what our lives were like.  Not to feel sorry for us, but to see how we were alike and to bind us together more. 

The consquence in this particular case is bigger than I thought it would be, but this is why sharing our stories is so very important.  It makes other peoples' worlds bigger, and ours less constricting.  It makes us brothers-in-arms and partners, rather than foes.

I love Lynn in real life.  And I am thankful for her and her willingness to jump in to what God asked her to do...and I am thankful for her challenging and strengthening friendship.

Please welcome Lynn.  Last time I had her on, she was sharing her OWN, she is sharing ours...

"I am currently in the midst of trying to help my church become more inclusive. When my eyes were first opened to the gap in how churches minister to families who are outside of the typical need I thought I was going to get to be a cheerleader for change. You can imagine my surprise when I look around to find that I'm not on the sidelines, but instead I'm the quarterback throwing passes and making plays. This is so backwards from where I thought I'd be that it has driven me to make sports analogies. I don't even like football! I'm the mom who signs up for anything except working with children. Why would God in his infinite wisdom pick someone so wholly unqualified as me? I struggled with that question for almost a year. Then it hit me, or God did, that I have time. I had a year to wonder. I have time to research, make calls, and take meetings. Time is my qualifier. Everyday families fight to make a place in this world for their child. Church should be one place where you don't have to fight to be welcomed. It should be someone from the outside with time fighting that battle. The need almost demands someone unqualified.

Once I finally had that settled in my mind I became extremely humbled and grateful that God choose to open my mind and my heart in this way. I can't even begin to describe how I have changed since embracing this call. I feel like I should apologize to everyone who I've ever known that has been touched by any sort of disability. There is so much we, the outsiders, just don't know, and we don't know that we don't know. I feel like I've swallowed the pill and woken up in the Matrix, only I know that I'm still only just looking through the window. One thing I never expected to see was the immeasurable blessings. In the past couple of months I have seen mountains move, gotten to know people in ways I never would have before, and seen the capacity we have to do good after realizing our failings. I know there are some who would say that I've been "burdened" with a calling, but that is so wrong. I have been blessed to be allowed to see God's guiding hand in caring for His children, all of His children, and I am very thankful.

Tiffany asked me specifically if I was thankful to be brought into this magical world or if I was upset to have been dragged in. The answer is yes. Yes, I am thankful that God has opened my eyes, changed my heart, and that this community is allowing me in. Yes, I am upset I was dragged into it, but not because I'm here, because I'm ashamed it took dragging. I am horrified by how much growing I still need to do, but that doesn't mean I'm not extremely thankful for realizing I needed to change."

Monday, November 5, 2012

November's 2012 Thankfulness Project

The last two years, I have invited other parents of kids with special needs on to share their stories.  I have been honored to host a myriad of different special needs along with Down Syndrome, including a whole host of ages.

My goal was two fold.  The first was remind my "special" readers a  that they are far from alone.  Also, to give my "typical" readers a peek at more than just my life, so they also see that I am not a unique situation, in attitude, nor in numbers.

I have tried to get local friends, who are not "Bloggers" to join me to share their stories as both an outlet and a "joining of the circle".  Also, I love to link fellow bloggers to share the camaraderie with my friends who do not know them or have the pleasure of reading them.  I love the opportunity to see other writers and to enjoy their stories, and to connect with their blogs...

This year, while I would like to do it again, I would love to try a new perspective.  I want to share this year's triumphs!  I am BEGGING you to write, reshare, or tweak a post focusing on something that you are excited about concerning your child's physical, emotional, or social development.  I would also love to see "SNAPSHOTS" where you showcase your child's interests and accomplishments, in a list or 3 or 10 or 21 or whatever!  You do not have to be a "Writer" or a "Blogger" just need a child or sibling or a beloved someone with with a disability or a little something extra...share what makes them the same as everybody else or share their most recent funny story or triumph.

You can read here the last couple of years of Fantastic:


If you have a blog, I will of course link you.  If you are not a blogger, but want in on the fun I will share however much information you feel comfortable with.  Please email me at: or contact me via Facebook.

Wednesday, October 31, 2012

31 for 21: Shaun the Sheep

This girl likes her obscure, impossible-to-find costumes.  And yet, I ALWAYS am willing to sacrifice sanity to make sure she gets what she wants.  Mostly because Halloween is so very awesome to her.  Partly, because with her sensory issues, it's a moral victory that she is willing to put on a costume of any kind and so I am always particularly willing to make sure it is a comfortable experience.

The last 3 years in particular, she has made specific requests.  She wanted to be a wolf/cat 2 years ago; Shrek/Fiona last year; and this year, Shaun the Sheep. 

Shaun is her VERY favorite movie star.  We have watched waaaay too many hours of Shaun.  And there is no dialogue.  None.  Everything is inferred.  And as we have discussed previously, Elise is the master of physical comedy and body language...she laughs uproariously the entirety of every episode, regardless of how many times we have watched it.

What?  You don't know who Shaun the Sheep is?  If you don't, you need to.  Because he's FANTASTICALLY awesome.  Even if your kids are asleep.

She even left her hat on this year for the whole time she was out trick-or-treating.  A first.  The things we get excited about!  :)

31 for 21: King of Fools or Gesture of Affection?

I used to enjoy all the stories of young people with disabilities that were crowned homecoming kings and queens...over the last few months I started fighting with my inner sceptical pessimist...


Are these young people getting honored or scorned?

I know some very intelligent young people and hurting "fringe" kids that are terrorized by self-appointed queen bees and whatever the equivalent male bully crowned prince is called.  They are strong, thoughtful people who know who they are.  They are not treated with respect.  They are not even left in peace, many times...  I know there are many young people with special needs that are bullied by teachers, paraprofessionals, and other students, because they can get away with it.

And yet, then I see these supposedly heartwarming stories of whole high schools that vote in peers with special needs in the honor courts and even to King or Queen of Homecoming.  Are they voted to these positions because of their magnetic personalities that manage to brighten the days around them?  I have no difficulty believing that my child and many others like her could impress her peers with her contagious joy.  Are they voted to these positions because the school craves the publicity for some reason?  Are they voted in because it is "cool" to like "kids like Becky on Glee"?  Because it was her dream on a show, are the fans extrapolating?  Are they voted in as a mass humiliation, like The Hunchback of Notre Dame, as the King of Fools?

I truly hate that I am questioning this...I wish my thoughts did not go there...but they do...

And I don't even know the answer....

But I know what I hope it is...I hope, that despite their own dark moments in the abyss of high school, that young people, for whatever the trigger, are doing it from genuine affection...And whatever their reasoning, I hope that their hearts and perspectives on disabilities are touched and expanded from seeing pure unadulterated joy...

Monday, October 29, 2012

31 for 21: Sharing

Much of this world views Down Syndrome as ugly, scary, and a broken-ness to be avoided. 

The doctor that delivered Elise told us with an apology and a cracking voice that our beautiful, pixie-sized daughter had Downs.  He followed this up with a comment that will forever be burned into my heart, that "there are many people out there who are willing to adopt babies like that."

When I went back to work, I sweet-talked the administration of the school that I was working at to do research on kids with Down Syndrome, their abilities, learning tendencies, and their future prognoses, as a teacher inservice credit. Ten years ago, for the most part, the information was very outdated.  The pictures were of tragically low persons in institutions.  The general future outlook was grim.  There were very few newer resources that were more positive.  You had to look very hard to find them.  The Einstein Syndrome was a strikingly fresh new look at Down Syndrome.  For the best resources, you were far better off calling your local Down Syndrome Association and talking to parents of older kids than actually reading the easiest to come by books.

I was getting more and more angry as I read.  I was frustrated at being told that my daughter had no boundless hope.  I was furious that at a measly 5 and 1/2 pounds she was literally having her future taken from her.  I was spoiling for a fight within 2 months.  I was a smoldering ash waiting for a dry forest opportunity.

When somehow, I stumbled onto "Down Syndrome Calendar".  I opened the page, and Band of Angels poured a balm over my very soul.

Their Beautiful Faces calendar and the Common Threads book, healed me and gave me hope.  They helped me give grace to those who clung to the darker outlook.  The gorgeous photos showed me that I was not alone thinking that my daughter was beautiful, despite the obvious features that the world told me spelled grief.  The triumphant stories in Common Threads gave me the confidence to go forward with the strongest of anticipation of a happy life.
I will be forever thankful for that web detour.  It gave me the peace I was craving. 
I share Common Threads with every new parent, and every pregnant woman that is told they have a high likelihood to have a child with Downs who is pressured into further testing.  I push it like a drug.  Because in a world that treasures brilliance and perfection, there is something magical on the 3rd chromosome in the 21st pair.  Sometimes I pity those who miss out.  I am being honest.  It is a great perspective to have.  Everyone should want a child with Downs.  I mean it.
If you have not seen this book, buy it.  Borrow it.  Read it.  Change your perspective.  Grow.  Be jealous of me...!  :) 
Band of Angels was started by a woman, Cynthia Kidder, who wanted to share the story of her son.  And to bring into focus "the discrepancy between the life that was predicted for Jordan and the life he actually lives".
Never underestimate the value of sharing your story.  You never know who needs to hear it.

Sunday, October 28, 2012

31 for 21: Language.

In the special needs circles, I tend to be the oddity as far as my politics.  I am exceedingly conservative.  For now, that means I am a republican.  I am not, however, married to a party; nor do I feel the need to protect those of my political leanings when they make stupid choices.

Ann Coulter, for example.  I respect her, as a woman.  She is well-educated.  She has worked hard to get where she is in the political eye.  She is *usually* thoughtful and well-spoken, even if she tends to be harsh, and self-admittedly biased.  Which is her right.

Which brings us to this last firestorm.  After her tweet after Romney and Obama's third debate, "I highly approve of Romney's decision to be kind and gentle to the retard", she managed to completely discredit herself.  She has managed to be offensive and abrasive in her response to the public outcry of her word choice, involving the ever mature and lovely, "screw them".

Frankly, she cannot be surprised, as she has chosen to use the word before and received hugely negative feedback.  Rather than use other words that would be less hurtful and offensive, and certainly more indicative of her intelligence and education; she has chosen to defend it citing:
"Look, no one would refer to a Down Syndrome child, someone with an actual mental handicap, by saying ‘retard.’ Where do you think the words ‘imbecile,’ ‘idiot,’ ‘moron,’ ‘cretin’ come from? These were all technical terms at one time. ‘Retard’ had been used colloquially to just mean ‘loser’ for 30 years,” Coulter insisted. “But no, no — these aggressive victims have to come out and tell you what words to use.”
Now, I am not a giant fan of the word police.  As a matter of fact, I prefer out-dated words, with a soft and caring heart, than politically correct vocabulary with a scornful, distasteful, indifferent treatment of my child.  But, Ms. Coulter has managed to use hurtful language and to disregard the special needs community's hurt by this word.  Not only that, she has continued to use the word in an ugly and offensive manner like a child that has been reprimanded for something they knew better than to do.
I do not agree with  John Franklin Stephens' politics, but he made such an excellent point, without calling her hateful names, taking pot-shots, or even using edgy language.  He made his point with thoughtful, insightful, poignant language.  He found that in making his point in a gentle manner, which comes across FAR more educated than Ms. Coulter, he met with people's hearts that don't even agree with him politically.  Which is something that she should maybe take pointers on?
Please read this entire open letter, via the Special Olympics' blog, to Ann Coulter.  HERE
Frankly, I think that he said everything that needs to be said.  I just wanted to make sure that everyone's seen it.

Saturday, October 27, 2012

31 for 21: 2012 Snapshot

This is an idea that I stole an idea from a friend and I'm revisiting it yet again this year...

My friend over at Sunflower Stories posted 21 facts about her boy...and has for several years...and I loved it so much I decided to do the same every year, whether or not I did the 31 for 21 again!!

HERE is our first and THIS is last year's!

And for this year:

1) Elise is in love with wolves, dinosaurs, dragons, horses, and sheep this year.

2) Her favorite movies and shows this year are:  Shrek, Ratatouille, Up, Shaun the Sheep, Wallace and Gromit, Mr. Bean, and anything involving a non-current holiday (we have watched Scared Shrek-less at least weekly since last November 2nd)...she still prefers shows that rely on physical expression and comedy rather than dialogue...She is on pins and needles for Brave to come out!

3)  Her cracker habit has been decimated...and therefore requests chips or crackers are for dessert nowadays.  She will occasionally ask for sandwich meat or hummus with chips for snacks, rather than simply caving in when her preferred is turned down.

4) She still folds herself up to sleep in a ball...and cannot sleep in a room alone.  There MUST be a sister or parent in it.  She springs up like a jack-in-the-box if you try to sneak out.

5)  Unlike last year, where she required her babies to be lined up in a line along the edges of her bed, she has kicked them all out.  Not one single doll or stuffed animal is allowed in her bed.  They have their own, separate bed in the corner.  And the quilt MUST cover every corner of the mattress or she will follow you out to the hall pleading...

6)  She loves to pet Simon, our rash decision cat.  Petting him is very calming and soothing to her.  He moves slowly, so he does not freak her out like our dog, who she has become SUPER patient and loving with.  She has not attempted to hit or kick him at all the year.  SO proud of that!!

7) Elise is playing more independently more often. Her dolls get to have adventures...but they refuse to have tea in plastic.  They will only suffer good china.  She loves to play with her plastic animal horde. They have families, friends, and often have conversations and trips now!  Although, her favorite part is still sorting and matching.
(I was in no way consulted or involved in this tea party.  In fact, I believed this tea set to be safe from her.)

8) She can read simple sentences on her own. Her independence is growing with her vocabulary.  She will actually do homework this year.  In previous years, she was completely tapped out and exhausted by the time she got home from school.

9)  She still enjoys to "read" books without pictures. She pores over them, enchanted with the idea of words and their potential.  And still basks in recipe books...and still refuses to eat them.

10)  She will listen to books being read.  In their entirety.  I know this sounds silly.  But she used to listen to a page, and then close the book on your fingers and jump to another one.

11) This year Elise independently paddles about in the pool!! She spent the entire summer enjoying swimming in her life-jacket, but you HAD to stay within a couple of feet from her.  But now, she will paddle up and down the length of the pool, using her arms and kicking.  Up until 2 summers ago there was screaming and she terrorized the whole she begs for it.  In fact, I am crediting it with a smidgeon of the weight she's lost.

12) She still despises to have her hair brushed. 

13)  She would submit to violent torture over a shower.  I almost got myself turned into DFCS because of a misjudgement in choosing to shower off the girls after a swim at the YMCA.

14) She still loves to cook. She adores Asian, Indian, and is branching out in textures.  And LOVES to be included in the making or planning of supper.  And will happily sort and put away silverware out of the dish washer.

15)  Pizza is the food of the gods.  Manna directly from heaven.  As a matter of fact, she named a baby doll after it. 
(This is "Baby Pizza")
16)  She was assessed crazy low on last year's psychological evaluation and IQ test, but still enjoys very sophisticated humor and could plan her escape from Alcatraz, and so I have decided to trash those numbers from my head.

17) Elise has taken to writing "notes" and "stories" in notebooks.  It's all scribbley, but she can usually tell you the same story several times when she is presented with the pictures and words.  So they must make sense to her.

18) She will still do her angry goose step and lizard tongue, if she is not pleased about something.  But I believe growling and similar verbal expressions are taking precedence (heading in the right direction!). 

19)  She no longer kisses friends and usually won't hug strangers. But we are still striving to curb hugs in favor of more verbal options
20)  We have pursued more sign language.  In September, we went outside the school system for Speech Therapy...and have a "date" with the Assistive Communications Technology in November, to see if there are any more options that we should consider to help her express herself more.
21) She is cutting back on thumb-sucking, and I feel like the petting of my eye-lashes is getting worse.  But she is beginning to save such persecution for those she loves.  :)
My girlie is growing up!!! Love her to death!!!

31 for 21: Birthday Photo Collage

My mother-in-law, the photo hound of the family, put together this fantastic collage for Elise's birthday, and so I decided to swipe this as yesterday's post...  :)

Some of her best!!  Isn't she gorgeous?!?! 

Proud mama, what can I say?  :)

Thursday, October 25, 2012

31 for 21: Happy 10th Birthday!!

I am not sure I can top myself from last year.  Please go read LAST YEAR'S post!!

This year Elise is 10.  I am an odd duck.  I know this and am okay with this.  But this year, I appear to be hung up on the number itself. 

10 is a nice number.  It is the base of all other numbers.  It is a measure of completeness.  It is an even number in which every portion of it has a match.  It is how life is blocked off.  In almost all areas.  Money, culture, sports, stars, music, science, language, even in the Bible.

As a simple description, it is perfection.  "She is a '10'!"  When a baby is born, we refer to "10 fingers and 10 toes" as a measure that they are beyond what was expected and the parents are enchanted.

Not to down-play my other kids AT ALL, but Elise is my "10".  She is a base in my world that adjusts everything else around her.  This is not to say the world revolves around her, but she has altered my perception, my reality, the depth of the world around us.  She has made me appreciate things I would have otherwise missed, in the day-to-day, in her siblings, in my family, in the spiritual world that swirls around us all.  She has changed my awareness of the fragility of life.  She has brought to consciousness the beauty of imperfection and the opportunities in it.  She has allowed me to embrace the idea that not being enough, is a good thing, in that I rely more heavily on others and in God Himself, and it is an exhilarating thing.  When you encourage God to fill in the holes of your deficiency, the good becomes exquisite.  The transcendence of the spiritual world over my expectations fills me in ways that I did not even know to ask for...

We regularly ask God to "get us through things".  We ask friends to pray us through dark times.  We rarely ask God to transform our lives and perspectives.  We never ask for enough.  In the Bible, we are told to over and over.  In the Bible, we are told that we MUST strive for more than we are.  And we are rarely bold enough to ask for it.

Romans 8:37-39
"37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Can you not hear it?  We are more than eeking through life.  We are more even than conquerors!  We are bound to God such that we CANNOT be broken from him.

Want to know something cool?  Count the things that were listed that cannot separate us.  It's 10.  Yep.  He used the base number, the measure of all things, to tell us that we are bigger than life.  We are tied to eternity.

I have shared this bit of trivia before.  But I read somewhere that the term "touched in the head" (defined as crazy or not all there) was based on the puritanical belief that the imperfect came as a protection. That those who were not whole had been touched by God without the "veil" drawn between...and the consequence was a barrier between them and everybody else. We could not comprehend God in all his glory and the intimacy would overwhelm those who could and had, were kept separate from others by a disability...There are many days that I absolutely believe that! Elise sees God more purely than the rest of us....but maybe she was put here, just to help us see past the veil.

God has used Elise to break my expectations of life over and over again.  She is my base 10.  She reminds me daily that I am tied to eternity.  She draws life past expectations.  She draws life past boundaries.  She has 10 fingers and 10 toes.  She enchants me.

She is 10 today, and somehow this is her perfect number, because she is "10" in all the ways you can use it.

Happy Birthday, my sweet girl!  Thank you for the perspective you brought with you.  We would never have seen life for what it was without you.

Wednesday, October 24, 2012

31 for 21: Better Than It Looks: Time

Article of Evidence #8, I've got more time.

Well, sort of.  I probably have less time in my day than I used to, but...

Tomorrow is Elise's 10th birthday.  Ethan told her to enjoy her "last day of being 9 today"...and we both laughed...and I said the usual, "Can you believe she is going into the double digits?" And we got to talking...yes, I am hyer-aware of how old she is.  She has packed a lot of living and stress into these last 10 years. 

We are much more aware of every single milestone she has had the privilege of hitting.  We had to fight for every single one.  Not one has been on time for our Elise.

Most kids, you expect for them to hit milestones, and get a little worried if they don' days or weeks...we fight tooth-and-nail for them by YEARS.

With typical kids, you find yourself, 3 years later, realizing that you really rushed your kids through growing up and "it went way too fast."  I find myself more than a little bit thankful for the awareness of the importance of the milestones... I am not cavalier with Elise's development, or even my subsequent kids...I have become increasingly thankful for each and every one that is hit...

I am really serious.  It is an interesting place of awareness to live.  And I kinda like it.

31 for 21: Better Than It Looks: Support

Article of Evidence #7...and you thought I'd lost count and forgotten!!

I have access to AMAZING support networks.

As the mother of a typical child first, I know that there are groups around town that you can choose to get plugged into.  There is, of course, family and long-standing friends that would come to your aid in a pinch...but for all out network that you know that you can call in the troops and EVERY MAN OF THEM WILL COME RUNNING?  Yeah, us cool kids have got that in spades.

I love the 31 for 21 blogoshpere because the veteran mamas will come out and post religiously...and I take obsessive notes... 

Last year, I was driven by friends' circumstances, to do a bit of research on sexual abuse and kids with special needs.  What I found was nauseating.  You can read it HERE.

I was pushed by that information to start limiting and structuring Elise's emotional/affectionate displays.  As a protection. 

The problem is, that Elise is still fairly non-verbal, and it is absolutely in her affection hierarchy to hug close friends.  We did put a total (successful!) kibosh on allowing her to kiss anyone but family.  But I'd allowed friend hugs to continue.  I was still somewhat at a loss to how to stop it completely, as it is in her emotional repertoire...and, I'll be honest, as a Southerner, it's heavily in most people's friendship greeting repertoires... so it's a really grey area...

She is also heavily physical in her displays of ALL emotions...AND I struggle because she craves sensory input, and asks for "heavy hugs" regularly as a calming device...

This year, a friend of mine posted a blog entry that has brought it all up in my mind again...and I needed to throw that out there for your thoughts and safety and also to ask for to allow for affection without putting her at risk...  HERE is her post. 

Truthfully, the safety factor is pretty clear.  But I am also somewhat worried about hurting her spirit, too...  It's a nasty, fine line...  Even if you argue that you can allow it with close friends, the statistics are clear in that 30%-60% of sexual assault occurs within close friend/family circles...

Can you ever protect as much as you need to and want to?  *sigh*

Pray hard.  And don't dismiss the paranoia.

I'm thankful for urges to protect my child and to deliberately think about ways to protect.

Monday, October 22, 2012

31 for 21: Better Than It Looks: Toys

Last night's/This morning's post also brought to mind another "we have it better than the Typs" post...

Toys are a long term investment

They are therapy, for fine motor, gross motor, speech, and sensory.  They provide input and help us put forth social mores.  With toys we can probe their understandings and allow practice for proper interaction.  We can learn more about their problem areas, we can learn more of their fears.  We can reinforce the behaviors we desire to see more of and discourage those we don't.  Some of us take it even further than most and make PECS (Picture Exchange Communications Systems) of varying degrees, social examples, and more.

Because their developmental levels tend to stay in holding patterns for longer, the toys don't tend to pass from interest as quickly.  I'll grant you, that there is usually a longer learning curve, that we end up having to teach PLAY, itself, but once learned, that toy stays in rotation for longer.

Elise, in particular, tends to fixate on social interactions on movies.  To exclusion of toys, sometimes.  But this birthday, I tried to offer toys suggestions and movies, in balance, to those asking for gift ideas...and I am thrilled to tell you, that the toys were the first things to be ripped from their packaging this year.  Not so, previously.

She still prefers matching/thematic toys that can be sorted and made into "families" that "match".  But the plastic families of dinosaurs are trying out more social interchanges without my input.  I know it sounds funny that I have had to teach this to an almost ten year old, but it has been a long road of significant effort.

SO.  Toys are important at my house and valued for their examples...I bet you just curse them for being sucked up in the vacuum, doncha?  :)

31 for 21: Better Than It Looks: Tweens

Yes.  I am late.  But I had internet issues last night...which also explains why you don't have pictures from Elise's birthday party...which I still owe you.  Tonight, it's on the docket.

BUT.  I have a good one for yesterday. 

My life is better than it looks because the tweenage years are delayed. 


Elise is 10 on Thursday.  She is squarely situated in the Tween years.  So speech is delayed.  And writing, and reading, and social interaction, and blah, blah, blah...  So is prepubescent mouthiness.  Yep!  And that's not all bad.

Right now, she "talks" back and spits at me, and sometimes doesn't want to hold my hand, but at the end of the day, she's still my snuggle bunny.  At the end of the day, she still thinks I'm the best thing since sliced bread.  Which, is already dying out a smidge with my 6 year old.  At the crack of dawn, she still tries to sneak into my bed to pet my face.  When she's watching TV, she still wants me there to watch and appreciate the funny stuff.  I am still the first person she seeks out for anything she finds cool or interesting.

Not only is my life better than it looks in this arena...but I'd hold it up against the typical kids out there, and say, it's BETTER than the "Typs" have it!!!  So there...!  :)

Saturday, October 20, 2012

31 for 21: Better Than It Looks: Friends

Elise had her birthday party today.  Aside from friends' food allergies, it was exactly like Amelia's party in July.  Maybe even smoother.

And you know what?  That's pretty awesome!

I'll post pictures on a bonus post tomorrow.  I'm beat. 

Friday, October 19, 2012

31 for 21: Better Than It Looks: Never Boring

Article of Evidence #4:

Elise brought me a present tonight.

She comes into the bathroom holds out her fist, "Here.  All done."

And hands me a tooth.

"Um.  Who's tooth is this?"

"Not mine."

"Well, who had this tooth in their head?"

"Me.  All done toof.  For da Toof Faiwy."

"It's not your tooth?  It's for the Tooth Fairy?"


Ah.  Ah-ha.  She lost another tooth.  This makes two in less than two weeks.  This was, again, a tooth that I never even knew was loose.  Until it was put in my hand.

Medically, educationally, physically, emotionally, and humorously, she is not boring, this kid.  NOT EVER.  I can predict almost nothing before 5 minutes ahead.  I am always on my toes.  I am always amused.  I am always pushed.  I am always entertained.

She is a firecracker of life and light.  She is never predictable.  She is always worth the stress.  She always gives life a new perspective.

She is great fun.  Even if you don't know what's coming next.

Thursday, October 18, 2012

31 for 21: Better Than It Looks: Oliver Twist

Quickie tonight, because I'm tired...

Article of Evidence #3:

If things ever got really bad, like pre-1800's England bad, we'd have Elise's pick-pocket skills to keep us in the manner we are accustomed...

Seriously, the girl has mad swiping skills. 

She takes stuff from the pantry and fridge regularly, and stashes them in the bathroom, under the guest room bed, or under her bed in a pinch...til the "heat" dies down, so she can indulge at her leisure.  Ethan caught her with an entire tupperware of fig newtons just last weekend...and no one heard her get them...

But my all time favorite case in point was back when she was little, still perfecting her skills.  When she was 7 or 8 we went to a family birthday party.  One of the guests was a man that Elise did not know, but she desperately wanted his phone, which was perched temptingly on his hip in a phone holster.  She kept sidling up to him and trying to take it.  He would nicely put his hand over it protectively, and say, "No, Sweetie."  Over and over and over this happened.  (She is nothing if not persistent.)  Finally, toward the end of the evening, she slipped up to him, and put her head against him...and he patted her shoulder...suddenly she looked up at the corner of the ceiling and gasped hugely.  I kid you not, every single person in the room looked up toward that corner, expectantly, while she calmly bumped up against him, lifted the phone and beat it toward the door.  He was still looking up at the ceiling and had not felt her professional steal.  I'd been watching her all evening, watching the calculation growing...and so when I, too, glanced up at the ceiling and saw nothing, I immediately looked back at Elise, and got to see the whole pick-pocket action.  I DIED laughing...I could barely get up to stop her and snitch back the phone!!  It was truly a master at work.  She was brilliant. 

Honestly, it was a little unnerving to see the calculation and success.  It was mind-blowing how she had read him, played him, and even figured in physical distraction techniques that most people would never even have thought of. 

And it is stories like this that comfort me and make me laugh, when the school psychologist tells me that she has no practical application skills.  When I am told that she has low outcome planning/projection, I can barely strangle back the ludicrousness of this idea.  She has a mastery of outcome projection/planning unlike anyone I have ever known.  She can read bodies, personalities, and expectations like a BOOK

The FBI should totally hire her to track criminal masterminds.  They would have no chance against her.  None.  Neal Caffrey eat your heart out.  Even you couldn't outfox these baby blues!!

Wednesday, October 17, 2012

31 for 21: Better than it Looks: All In

Article of Evidence #2:

I've spoken of my favorite part of Elise BEFORE.  And I stand by it.  She lives Life, to the very edges...huge-er than life...100% of the time.

We always speak of people "giving it 110%"'ve never met someone who lives that big until you've met Elise...ever.  I promise.  Those who know my girl, feel free to back me up.

My mother and I bought her a placard for over her bed last year with this quote: "Life is good, life is big. Life beats a rhythm in every heart that beckons each of us to join the dance."
~ Annie Danielson
And it was so perfect for her, because her life is a swirl and she invites you in...drags some of us... 

When Elise was first born, I heard this song for the first time. 

I Hope You Dance.  Lee Ann Womack.

We were already watching her heart.  We knew that her path was starting out harder.  And I prayed.  That no matter what she would have to deal with in conjunction with the Downs, that she would live to the fullest of her potential.  And WOW she has not disappointed!

Her sadness is bigger.  Her excitement is bigger.  Her irritation is bigger. Her surprise is bigger.  Her anger is bigger.  Her effort is bigger.  Her persistence is bigger.  Her joy fills the room.  Her EVERYTHING is bigger than anyone you've ever met. 

She misses no opportunities.  She misses no body language.  She misses no parties.  She misses no needs.  She misses nothing.

I appreciate her.  I treasure her.  I aspire to be like her.

Tuesday, October 16, 2012

31 for 21: Better Than It Looks: Set to Music

I told you yesterday that My Life is Better Than it Looks, yes?  And I also told you that I would prove it to you...  And so I present Article of Evidence #1:

While Elise may be fairly non-verbal (she has the vocabulary and speech structure of a 2-3 year old)...she KNOWS her music.

She loves Switchfoot, Dinah Washington,  the Cedarmont Kids, Cake, Brad Paisley, and The Hallelujah Chorus...She not only head-bops to the music, but can sing along with the music...the words are sometimes not clear, although she knows her favorites...but her enthusiasm and enjoyment are in no way affected by that.

I cannot read all.  Which should surprise you if you know that I have been in a choir, from the time I was 5 until I was about 22.  And once my kids get older, I am sure I will go back...  I don't read music.  I predict it.  I can tell where the notes will go based on how the music flows...and I can pick up words in one or two run throughs...and Elise appears to have a similar ability. 

She LOVES to sing in church.  She adores hymns and hymnals.  I have bawled through church more times than I care to confess, because I can hear her throaty, husky voice belting out words precious to me...  I am quite sure that is how God sneaks into her heart...she hears him...really listens...with all the same enthusiasm she attacks the rest of her life!

My other kids don't sing unless they know the song already.  They listen, they read the words.  They learn it with their heads first.  Elise sings first.  She learns the hymns with her heart first.  She allows the music to flow through her and learns it her soul overflows with joy and praise...

I do believe that she and the Holy Spirit have communed more deeply than the rest of us...and she certainly "believes as a child"...  I know it blesses me...and I am sure she has blessed others by her openness with God's joy! 

Monday, October 15, 2012

31 for 21: It Is Better Than It Looks

There is a movie that I have fallen in love with's my go-to folding laundry movie...up until lately, it was either Harry Potter or Jane Austen...but I LOVE "The Decoy Bride"!!

It is British and everything that that entails:  situational comedy, witty snarks, and beautiful to look at.  An absolute pleasure.
There is a part, where she tells the guy, "I'm a lot hotter than I look."  And somehow that resonates with me at a deep level.  Funnily enough, it came to mind when I started writing this post...
I write most of my posts in my mind, in the car, before I ever open my computer.  I had this one almost done, when I opened a bloggy friend's post This Morning, which tied me in nicely, too.  Which sets me up...
My life is better than it looks.
I am dead serious.  My kids are great.  All FOUR of them.  Including my not-so-typical-one.  She is beautiful and spunky.  She has come leaps-and-bounds-forward over the last year...and for all I seem to write about the "Off" parts of life, I really don't feel it most of the time...I write because that's what's going on...but I don't think to compare it until something big happens or I'm filling out the Deeming Waiver packet...It's just my life, and, frankly, I'm enjoying it.
Once a year, I have to fill out paperwork for the Katie Beckett Deeming Waiver.  It allows kids with profound issues to get Medicaid as a secondary insurance.  So if you have stinky insurance, your kid can get the intervention they desperately need without putting you in the poor house.  For example, Elise blows through ALL of our insurance's allowed therapies in 4 days, the first week of January, she has met her quota for the year.  Everything else is out of pocket.  And that's just the beginning...
The Deeming Waiver is a blessing.  Which is why I fill it out every year.  But the paperwork, while an astounding load, is also an emotional battery.  I have to say, over and over...and give examples and proof, that my child is "profound" and "mentally retarded" and would qualify easily for a "Mentally Impaired"  facility.  I have to prove where she is behind...and it is ground into my psyche with a battering ram for a month every year.  This year, I filled out all my papers, collected our psychological evaluation, therapy notes, and so on...for a grand total of 95 pages.  No lie.  I just copied them and sent them this morning.
I am raw and hyper aware just how behind her peers she is.  And the thing is, this won't be changing much by next year.  The Down Syndrome and secondary diagnoses will not be going away.  The bonus 21st will not be dropping out the car door at some point...  So why am I forced to reiterate this every she can get interventions that will help her to improve from her current beyond me...unless they are just masochistic and mean...
And to top it off with a cherry, I got her school photos on Friday.  I took them out of her bag this morning.  And in all the years of school pictures, in all the years of off the cuff photos, in all the years of candids, we've never gotten one this bad.  She LOOKS like what the Deeming Waiver wants me to prove she is to them.
I called up the photo group and told them what I thought of it.  I told them that it was the worst picture that has ever been taken of her.  I told them that the photographer HAD to have known that it was bad.  I said that I felt like it was a kick in the teeth, that the photographer saw just a kid with special needs and didn't bother trying...  The customer service guy, responded.  "Woah.  Yes.  I agree.  They had to a matter of fact, this was the retake, from one almost as bad...but her eyes were closed."  He then told me how to get retakes and my package would be changed over to the new photo, free of charge... 
'Member when I said, some people just don't care?  Yeah.  This would be proof.
Last year, I was just bragging that she took fabulous school pictures...See Here...and the years before that were even more spectacular!!  But how can you see *THIS* child: 
And take the previous picture?????  I just don't get it.  And it makes me REALLY Mama Bear Mad.
SO.  PLEASE see my girl the way I do.  Celebrate with me the crazy milestones.  Hear the truth in your mother's words, "It tastes better than it looks, I promise!"  See my life for the joy and fun we have.  Feel Elise's joy roll off you in waves.
Because my life is pretty darn good.  And that's the truth.  And I'll prove it tomorrow...!