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.