Wednesday, October 29, 2014

The Advertisement Campaign For (High Functioning) Disabilities

It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better more desirable version of the child and their disability.  

I say that as news stories abound everywhere on social media like Facebook, Instagram and Twitter with pictures galore of children and adults with Down syndrome, autism or other disabilities participating in athletics like cheerleading, basketball, or wrestling on school teams, graduating from high school with their diploma in hand, modeling for Target, Nordstrom and Toy 'R Us, getting a regular old job or even being a bat boy for the Cincinnati Reds.  Videos of dancers or athletes with Down syndrome blowing people's ever loving minds by their abilities. Marriages, driver's licenses and college bound adults with disabilities are rising.  How about the boy with autism who is a physics genius and is working on his own theory of relativity?  All amazing and all awe inspiring individuals.  We all ooooh, aaaah, smile and even shed a few happy tears watching the videos, hearing the stories and seeing the pictures.  Especially those of us who have a child with the same disability enjoy it, all the while, probably some of us secretly or blatantly hoping for the same or even higher accomplishments and recognitions for our child particularly those parents who are very new to the game and don't really know the full extent of how the disability will affect their child. 

Now don't get me wrong, I think it's wonderful they are all able to participate in something they love and excel at it and I really do enjoy seeing their happy faces beaming with pride of what they've achieved with a lot of hard work.  There really are so many individuals exceeding expectations, goals and misconceived mindsets.  It is a sight to behold and of course they should celebrate and share about their accomplishments, but I think we as a society desire and put up on a pedestal per se the "higher functioning" child.  

I now struggle with the words higher and lower functioning.  I myself have used them throughout this blog for lack of better words to convey my thoughts and meaning when describing my children.  When I used higher functioning before Lily, usually about the twins, I was referring to their ability to speak, excel in school, socialness (made up word?) and their intelligence.  I see now that my definition was a little skewed because I was comparing them to other individuals on the autism spectrum that were nothing like my two (it's not called a spectrum for nothing).  I got caught up in the relief I felt that they were higher functioning then many of their peers and appeared to have a "higher" potential to succeed and perhaps appear more "normal" to the world.  Normal was my hope....my dream in the early years. Let's try to fix them as if they were broken.  As if we could glue their broken puzzling minds and bodies back together.  

But what about those so-called "lower functioning" individuals.  What place do they have? Shouldn't the child in a wheelchair deserve as much recognition and acceptance for their abilities whatever they may be or as minor as they may seem as the child with autism performing in the school's top band.  So what if a kid with significant mental or physical delays isn't involved with the Special Olympics or can't be trained to hold a job.  What if they are never potty trained?  Would it really be that awful if they never moved out or never had a meaningful relationship outside of their immediate family.  Is it really impossible for society to enjoy an individual who's needs are higher and their ambitions are nonexistent?

I struggled with this in particular this summer when I went to the NDSS convention in Indy. Everywhere you turned there were presentations and praises of adults with Down syndrome who'd exceeded all expectations and WOWED the Down syndrome community.  I felt a little torn because on one hand I could see this kind of future for Dasha, but on the other hand Lily wasn't like these individuals and never will be.  This was a convention all about Down syndrome, yet I almost felt like Lily with her three diagnoses didn't quite fit the convention overall theme.  

In my opinion, there shouldn't be such a strong focus on someone's level of function, how verbal they are or what life skills they've mastered when trying to obtain acceptance, raise awareness and gain the use of inclusive practices.  I often wonder if other families with children with a disability or multiple disabilities struggling to meet milestones, gain life skills or perhaps already reached their fullest potential early on feel like they are in the shadows.....ignored or undervalued when compared to peers with the same diagnosis who are celebrated for their successes in their life.  

I've felt that way a bit with Lily with her having Down syndrome, autism and most recently finding out she has Ehler's Danlos Syndrome.  She's not fully potty trained and frankly she really doesn't care to be.  She's not overly social and often wishes everyone would leave her alone with her best friend the iPad.  She dislikes anything new or any change from her daily schedule.  She has major anxiety.  She's had a lot of health issues and major sensory processing issues.  She can't run, but she sure can lollygag like a pro on the couch watching Barney.  She can't feed herself very well, has a hard time holding utensils and I often spoon feed her a specially concocted baby type oatmeal cereal with supplements and protein power.  She'd prefer not to dress herself and she sure as heck hates to put on shoes.  She can read well though and she can label pretty much every single animal picture she sees and usually does a pretty good rendition of what each animals sounds like.  My favorites are the rhino and eagle.  She's also a whiz on the iPad. She's incredibly sweet, kind and a love bug.  The problem is to an onlooker, she is "low functioning" and many people just aren't comfortable with that.

People gravitate towards Dasha because she responds to them.  She is very social and engaging.  She loves people and goes out of her way to gain their attention.  She can run fast, throw a ball, kick a ball and is very athletic overall.  She is potty trained.  She can feed herself quite well.  She also dresses herself, brushes her hair, ties her shoes and wants to participate with her peers everyday.  She loves to be included and hates to be left out.  Overall, she'd be the poster child for the higher functioning child with Down syndrome because she is more like a typical child than not, but looks can be deceiving.  School is very hard for her and her speech can be unintelligible.  It's interesting how people allow for that though.  They prefer that to be the norm for someone with Down syndrome. 

My wish...No, my new dream these days is for everyone to value the kids like Lily who have multiple diagnoses affecting them, or the child with CP in the wheelchair who will never walk, the boy with autism rapidly rocking in church making loud vocalizations, but is nonverbal or the little girl in the wheelchair waving and flapping while screeching happily with a big smile on her face oblivious to anyone around her as much as the ones who can walk, talk, dance in recitals, make a touchdown, shoot a winning 3 point shot, receive their High School diploma or graduate from College by the time they are 16.   I'd love to see a child with Treacher Collins or a cleft palate (repaired or not) grace the pages of Nordstrom's next catalog.

If you are promoting acceptance of disabilities, then please embrace and include everyone...the lower functioning, the mid functioning and of course the high functioning.  They all have a story and need to be celebrated because in the end all life is precious no matter their functioning level.

#31for21

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Friday, October 24, 2014

Flashback Friday


Izzy's first Halloween in 2007.
A Colt's Cheerleader with her pet Octopus. ;)


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Thursday, October 16, 2014

OCD And Autism Goes Hand In Hand In This House




Well this often referred to autism expert mom (I wish) is grappling with what to do about a few of Leo's latest obsessions.  Not to say he doesn't have multiple obsessions, but this first one is pretty bizarre.  It is interfering with his daily life and causing issues with his speech function and acquisition.  

Leo's newest talent (seen more like a glitch in the neuro-typical world) is doing everything backwards including talking.  He'll do or say something forwards and then for kicks have to do or say it backwards.  Obstacle courses, phrases ("I want apple juice please" and then with zero hesitation "please juice apple want I") and just plain walking are starting to rule our days with the backwards element added in because he can get pretty ticked when you try to stop him from doing it and even wait you out to accomplish it.  His newest backwards talking is especially hard to get mad about because, well simply put, he's actually talking.  He's still considered nonverbal and probably only speaks 5% of the time.  

He's also quickly figured out that by saying "I love you" to Matt or myself pretty much renders us incapable of telling him no to just about anything...the world is his oyster for those appropriately said 3 little words.  Today he came up and gave me a big hug and I heard the coveted "I love you" and then a quick "you love I" followed.  :sigh:  My heart still melted though.. 

They refer to these quirks as OCD (obsessive compulsive disorder) and I'm very familiar with OCD  traits with a few other children in our eccentric little family, but OCD is consuming Leo.  It's also difficult getting everyone who works with Leo on the same page so we can address it.  If you watched the TV show "Monk" at all, then you'd understand a bit how this is taking over his life.  Everyone though is encouraging us to curb or nip these OCD type behaviors in the bud as soon as we see them. 

I'm warring with myself as I stop some of these behaviors all the while breaking his heart. Tonight, I put him to bed on the wrong side (he only wants to get in on the right side bed -no pun intended).  I lovingly picked him up, being all silly and such, and carried him to the left side with him giggling all the way.  His body had barely touched the bed before he was scrambling to get out to go to the other side.  

I once again dragged him to the left side of the bed, plopped in beside him tickling and playing "little piggy" and he laughed while I did it enjoying Mommy time.  Then I hopped up, threw on his blankets (there are at least 5) the way he likes them, turned on his music and literally ran from the room singing a cheerful "Goodnight baby boy!  Sleep well!" as I shut the door.  

Immediate sobbing ensued from inside the room as he panicked.  I lasted 5 minutes before I went back in, turned the light back on and watched him leap from the bed and circle around to get in the other side with a tearful relieved smile lighting his face.  I once again placed his blankets just so because that's what loving mamas do who don't like to see their sweet little boys in despair.  I made it all better, but went all the way back to square one.  

I have no backbone with this child.  I'm so in trouble.  :/


I Love You.

Subtle but still big progress this past Monday for Leo.  I told him it was time for the bus and without me prompting him, he walked to the back hall, picked up his backpack and put it on ready to go outside.





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Monday, October 6, 2014

A Match Made In Heaven

6 years ago today, a judge in Dnipropetrovsk, Ukraine ruled Matt and I were Dasha's parents after living in an orphanage for 5 1/2 years after she was abandoned at birth in the hospital just for having Down syndrome.  Some say we "saved" her, but in reality we just gave her one big crazy family to blossom, to shine and to be loved dearly by.... ♥


#31for21

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Sunday, October 5, 2014

My Top Ten Read Blog Posts About Down Syndrome


After doing the "Flashback Friday" post a few days ago, I thought it would be interesting to see what were my most read posts on my blog labelled for Down syndrome.  So I scrolled back over the past 6 1/2 years to see the numbers and although some posts share an adoption or autism theme, I think it's pretty amazing how often these have been read just by me posting on Facebook, shared by readers or even reached by way of internet searches like Google with a few key words.  

My most read post regarding Down syndrome is "Three Types Of Down Syndrome" which has been read by more than 7500 people.  Wow.  I guess I'm raising a fairly good amount of awareness in my little corner of the world via the World Wide Web.

#10 The Short Bus

#9  Would I Cure Them?

#8  Feeling A Bit Lost In A Perfect World

#7  Hypotonia And Hypermobility

#6  The Angel Stereotype And Down Syndrome

#5  Why'd We Adopt?

#4  Favorite Sensory Toys In Our House

#3  The Poopy Button

#2  For Parents Of Kids With Autism Or Down Syndrome Who Run, Bolt or Wander Away

#1  Three Types Of Down Syndrome


#31for21

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Friday, October 3, 2014

Flashback Friday

Garden of the Gods


Circa Summer 2002 
(or maybe 2001?)
Colorado Springs, CO

Left to Right -Kaelan (6 1/2), Riley (8 1/2) & Reagan (6 1/2)

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Thursday, October 2, 2014

The Dynamic Duo Team For Buddy Walk 2014

On Saturday, October 11th, we all will be participating in the 17th Annual Buddy Walk in downtown Indianapolis at Celebration Plaza of White River State Park.  Festivities and Entertainment begin at 9am; Walk begins at noon.  All are welcome and we'd be most appreciative to those wanting to participate and/or donate to the girls' team.  All funds raised will go to Down Syndrome Indiana (who is awesome!).  "DSI is dedicated to enhancing the lives of individuals with Down syndrome" through "support and advocacy, which promotes inclusion and acceptance in the community." 

This year, we decided it was high time we had a team and thought "The Dynamic Duo" was the perfect name for the girls.  We are even getting all fancy and having a whopping 12 t-shirts made with a Matt-made design on the front for our family to wear and show our support. Below is the design which will be printed on Lily approved purple t-shirts (because she loves a certain purple dinosaur of course!) with white writing.  :)



Excerpt from the First Giving site:

11 years ago, we were introduced to the wonderful world of Down syndrome with the birth of our daughter Lily.  We were so enamored with Lily, we decided to add another chromosomally enhanced girl to the family with the adoption of Dasha from Ukraine when she was 5 1/2 years old.  Dasha (11 1/2) and Lily (1) light up our world with their unique, fun loving, sweet personalities every day.  

We believe Lily's and Dasha's generation could help dispel most, if not all, of the myths and misperceptions of Down syndrome, if given the chance.  buddy Walks held across the country are a perfect public venue as well as using social media like blogs, Facebook and other websites to show the world the beauty, the joy, and yes, even the struggles of having Down syndrome.  And guess what, by sharing our children and lives with family, friends and virtual strangers, we are slowly but surely bringing about greater acceptance, better knowledge, increased inclusion, more specialized therapies, and continued advancements in the medical/health aspects of Down syndrome.  This generation is paving the way for the true potential of each individual with Down syndrome to be fully realized.  It may take a bit more time and effort to get them there, but we believe our girls are worth it.  Don't you?

If you'd like to donate to Dasha and Lily's team, click-->>  The Dynamic Duo
Thank you!!


#31for21

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Wednesday, October 1, 2014

October Is Down Syndrome Awareness Month

I've signed up for the 31 for 21 challenge again this year and will attempt to blog all 31 days of October for Down syndrome awareness.  Another idea for raising awareness for Down syndrome is doing 31 acts of kindness throughout the month attaching a small card sharing how October is Down syndrome Awareness Month and also including a truth about Down syndrome.  I like both ideas so I'm going to try to incorporate both this month.  So today I'm just going to share a few recent pictures of my two girls who I absolutely adore who just so happen to have Down syndrome.


Girl's best friend

My angel girl Lily


Dasha's ride

At the Down syndrome Doc & Endocrinologist's office


#31for21

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Tuesday, September 30, 2014

A Quest For Health


Over 2 years ago, I wrote on my blog a post (Btw, here's the post) about how you should never ever ask a woman if she's pregnant just because she may be sporting a bit of a tummy (aka: a faux baby bump).  I wrote that post declaring my desire to lose enough weight to feel stronger, healthier and to stop hearing people asking me about my possible due date.  Things didn't really work out the way I thought they would and I even began to resign myself to the belief that maybe my age, being female (hormones) and my crazy busy life were to blame.  I couldn't see any of those aspects changing in the near future in my favor...

I continued trying to curb my poor food choices, gave up Diet Coke and continued my workout schedule with little change.  Stress, anxiety and overall sense of being overwhelmed with many aspects of my life continued to hinder my success.  Then last year in August, my father became very ill and I helplessly watched him die from complications of cancer within a month. The aftermath with my emotional state wasn't pretty as you can probably imagine.  I quickly put on 10 pounds nibbling away at my sorrow with every comfort food within reach.  Fast Food was an especially easy dinner choice especially in the throes of my grief.

As I was munching on some homemade peanut butter cookies, I was skimming (more like stalking) a friend of mine's Facebook status updates showing her losing dramatic amounts of weight while raving about how wonderful she felt, how much energy she'd regained and how she was handling her stress more effectively.  To be honest, I've never met her in real life, but we share many things in common.  Adoption, Down syndrome and 7 children were the top three. I later realized her husband was even a musician.  Small world indeed.  She'd also had a lot of stress in her life and grief from losing a loved one in the not so distant past.  She'd been existing very much like I felt I was existing after the death of my father and all of Lily's major medical woes, but from what I could tell reading her posts last year, she'd found something that changed her life for the better.

So in December, I started my quest for improved health because I couldn't carry on the way things were going.  Since I tend to be a hypochondriac and watching someone die from cancer tends to bring all of those scary fears and what if's to the forefront of anyone's mind, I scheduled a colonoscopy for myself and for Matt in December of last year because I needed to check that fear off the list.  I also had a complete physical and saw my Cardiologist.  I started seeing a psychologist to deal with all the agitated thoughts floating around in my head, the anger and intense grief I felt over my dad's death on top of all the day by day hard stuff of having multiple children with significant diagnosis's in my life.

I also contacted the friend on Facebook who'd lost over 30 lbs. doing a nutritional cleanse and fat burning system because I was ready to change my health for the better, lose weight and gain control of my life again.  One thing I heard from the get go was that this was a lifestyle change not a diet.  At the time, I was more enamored with losing the weight and overall feeling better than anything else.  I ordered the system with all the bells and whistles including every thing I'd needed to get started on my quest for better health and a smaller pants size. The big brown box arrived full of goodies right before my colonoscopy in December so I stored it in my closet for after the New Year.  I wanted to have a bit of a Mardi Gras during the Christmas holiday (pumpkin bread, sugar cookies, many meals with visiting family etc.) before hitting my new reality since I knew Christmas was going to be especially hard with my dad gone.

On January 4th, I took my "before" pictures, did an official weigh in, and also took a few measurements so I could see my progress whether it be by pounds or inches.   I also dove mouth first into my first chocolate shake for my breakfast.  To be honest, it tasted weird, but doable especially compared to the heinous prep drink I had to drink for my colonscopy the month prior.  If you've ever had to prep for anything involving your colon, you know exactly what I'm talking about....that stuff is foul.  :/  I followed the protocol to the letter throughout the day and was surprised how well I did.  I also wasn't fainting from hunger.  From a picky person's standpoint, I didn't love a lot of the things I was required to drink, eat or swallow at first.  But after my first nutritional cleanse experience about a week in, I noticed my tastes started to change.  The shakes in particular were starting to taste better and I was getting used to the overall routine of the program.  My results after 30 days which included 4 nutritional cleanse days were 11 pounds lighter and 15 inches smaller.  

On those awesome results, I forged on and now 9 months later, I've decided to out myself to the WWW because I have to share how this was a life changer for me.  My weight loss at this point is 31 pounds and countless inches (over 30 at last count).  I have my energy back, I sleep well almost every night and my anxiety is now at a manageable level.  My endurance during my workouts are tenfold and being lighter makes working out so much easier on my joints.  I still deal with a lot of stress and obviously that's not going to go away anytime in the near future, but I know I'm a better calmer mom for my kids. The other upside to my healthier lifestyle is that I no longer have weird body aches like tailbone pain, haven't had any head pain since January and my skin is so much smoother and softer (and I don't use lotion). 

Bottom line:  I feel amazing.  The other day I celebrated my 47th birthday and I really couldn't think of a better gift to myself than my new thinner, stronger, healthier body.


Before: Jan 2014  After: Sept 2014


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Tuesday, September 2, 2014

Lily's 11th Birthday!

Today we celebrated our sweet angel Lily's birthday with gentle fanfare.  Lily's easily overwhelmed by loud excitement and singing especially the famous "Happy Birthday" song so we toned it down, but kept our joy factor very high.  She did great.  We actually had our 2nd year in a row of a calm happy birthday girl loving every second...well except for the candle blowing, but in the end she gave it a try which is a first for her.

The theme was Barney with the gift giving.  For those who know Lily, no big surprise.  Amazon was my go to for her gifts since DVD's cost only $5 and used out of print books are cheaply found as well.  She loved everything and after opening everything immediately said "Upstairs!!" which translated means "Okay, Mommy please take all of my gifts up to my room RIGHT NOW!!" 

Below are some pictures and videos of her I wanted to share to give you a glimpse into her personality since most of you have never met Lily and she's pretty much a keep to herself shy little thing.  She's lit our world up for the past eleven years and we love her dearly.  

Her cake
that she actually ate some of and liked! :)





**Please note that I have a couple of teenagers giving commentary in the background so you may hear me reprimand them a bit during the video. #justkeepingitreal.** 



Then a little later she enjoyed her favorite thing for dinner - chicken and french fries!!



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Thursday, August 21, 2014

First Day Of School

Whew!  Summer flew by, didn't it?  How is it almost September?!  I'm still busy doing my mama gig, but been MIA from this blog all summer from being a bit off kilter with the summer schedule and everyone home.  Lots of things happening around here, but I'm going to start off with a light post of pictures showing first day of school excitement (or lack thereof from the teenagers) to get me back in the swing of blogging. :)


 My 2 handsome seniors


I have to admit I took Kaelan's picture unbeknownst to him so shhhhh about the awesome smile he has, okay? ;)



My 2 joyful fourth graders

My oh so sweet first grader


and my precious preschooler

The youngest four are all at the same school this year which I LOVE!!  We are hoping and praying for a successful year full of learning and of course fun!  I'll update more in detail about each kiddo soon with an individual post about their summer happenings, new school year activities and what supports are in place for each this year.  All 6 have IEP's (individualized education plan) to help facilitate a effective and productive environment in school (hopefully), but we made and will still need to make a few decisions that affect or will affect a few of them with their schooling.  It's so hard as a parent not to second guess yourself trying to figure out what's best for each one of them based on their individual needs and personalities, let alone what they think they need or want to do especially the teenagers. 
     
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Tuesday, June 24, 2014

Past Two Months Catch-Up

I'm soooo far behind with the goings on 'round here that I decided to do one long photographic post with most of all that's happened in the last 2 months for anyone who's not seen it already on Facebook.  If you've seen it, please bear with me since I know there is at least a few people who'd like to see these pictures who aren't on Facebook.  There will be additional posts about Dasha's Down syndrome overnight camp and our visit to see Great-grandpa Riley in the very near future.  :)

Easter (can't believe this was 2 months ago) was during Lily's recovery from her surgery, but some of us went out to eat for brunch with my family at a little place my dad loved.  It was a bit hard going in knowing he wasn't going to be there, but it was good to see my mom and a few siblings with their families.  Kids love the buffet line of brunch food too!

Leo's first Easter Egg hunt.  He's had zero interest before now and this was at our town's annual hunt.

Reagan went to Prom.  No pressure these days to have a date for which I think is a great idea and it was held at the Indianapolis Children's Museum.  He had a "awesome" time.

Dasha is once again doing Therapeutic riding this Spring/Summer and loving it!  Therapeutic riding is different from Hippotherapy.  She is actually learning how to ride a horse using reigns and stirrups.

Dasha celebrated her First Holy Communion in May.  Here she is practicing...she was soooo excited!!

She was beautiful in her borrowed white dress.




She was perfect during the entire Mass.

video


Down Syndrome Indiana had an opportunity that allowed families to spend a few hours at Sarah Fisher Hartman's team at the track in May and Dasha, Matt and Riley went down to Indy for the event.  The picture below is of Josef Newgarden, Dasha and Alex Tagliani.


Lily and Dasha had their year long Speciality animal projects to present for 3rd grade in May.  Dasha did Wild Dogs and Lily did Monkeys.


They were so smitten with Dasha, Sarah Hartman Fisher Racing invited her back for a pre-race party on Carb Day (Friday before the Indy 500).



Last day of school for the girls!
  
Lily excitedly walking to the bus.


Leo and Lily are doing Hippotherapy (horseback riding therapy) at the same time this summer.



Riley is back racing in his kart for the season.  Going with a Dale Earnhardt theme this year. 


Matt and I celebrated 23 years on May 31st.  ♥

The boys did their annual trip to King's Island and got their traditional crazy roller coaster pic

and the ever present frown picture of Kaelan with his brothers in front of the Eiffel Tower

Izzy danced in her very first recital and I officially became a "dance mom" 





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