31 for 21: Pizza Friday and Puppies

Elise loves Pizza.  Perhaps with a passion that most people cannot comprehend.

She wants it for any celebration for the rest of forever. 

Whenever I asked what people wanted to eat, it was always pizza.  If the answer was "no", it was followed by massive weeping and huge depression.

About this time last year, I discovered that if there was anything Elise liked more, it was expectations.  She loves a constant schedule.  I think this is a primary reason she likes school.  I am not a schedule person.  It does not make me happy.

BUT I don't like constant sadness, either.  So we implemented Pizza Friday.  She had a constant expectation that she would indeed get pizza, without fail on Friday, but tonight is not Friday.  She could make peace with that, Friday nights became no-brainers, and the rest of the kids thought this was marvelous.

It has encouraged us all to enable more routine, and it has made it our lives much nicer...I have even bought a planner.  *gasp*

 

 

 

Today, October the 3rd, 2014, marks another shocking milestone.

 

Today I was able to march into a regular store, with no list or angst, and purchase Elise's birthday presents.  And I know, with no reservations, that she will love them.  And play with them.

 

This may be a weird piece of information, but Elise doesn't really play with toys.  She likes toys, but has very few that she interacts with and takes pleasure form.  About once a year, she figures out some aspect of "play" and life improves drastically. 

 

She is turning 12 at the end of this month, and what has she been pining for?  A Nerf Crossbow.  For about 6 months.  I cannot wait to present it to her.

 

I also found this blast from my past, Puppy Surprise:

It is a pregnant puppy.  You open its Velcro tummy, and get a secret number of puppies out.  It's a little freaky, but for someone who is obsessed with matching and family, it's going to blow her mind.  And its name is Popcorn.  Another one of her favorite things.

I'll post pix of her receiving them, but for once, I am really, REALLY excited to see her reaction!  :)

As always, her birthday reminds me where she is not, compared to her peers, but, every single year, we can look back and see some major strides in some aspect of her development.  And we quite honestly party!

This year, we are PLAYING!!!

31 for 21: Angels

I have totally hit this one a thousand times.  I am sure I will hit it again another thousand...

If I hear "Oh, you have a child with Down Syndrome?  They are SUCH angels!!!"  again.....

Well, I'll sigh and tell them my kid is just like theirs...she rolls her eyes at me, she ignores me, she talks back to me, she snitches food out of the pantry and lies about it...pretty standard for any 11/12 year old...  Not really that much of an ANGEL.

But I do have to bring to the fore a thought I had yesterday...When I was thinking about their drive to live their lives like everyone else, I am reminded that they also tend to celebrate...a lot.  Which is, I think, why people think that they are such angels...  Which made me wonder why they seem take the lion's share of celebrating?  I think it comes back to my commentary yesterday, on the needfulness of trying harder than the average bear to succeed in their plans for life?  I think the world thinks they are angels because they are triumphing more, because they are more aware of their goals, because they have to work harder and have more pressure than most.

Pro soccer players or those at the World Cup, for example.  They play the same game as my 8 year old niece.  The plays are almost identical.  The goal, certainly is.  To win.  But their celebrations... just...wow.  I cannot say in all the years of watching soccer games in high school or watching my own kids, have I seen this: 

 

And my sister-in-law hasn't posted any pictures of my niece like this:

 



I propose that the celebrations that almost all the people I know with Down Syndrome indulge in, may not come from an angelic sense, nor from a child-like comprehension, as much as an exaltation of success or inclusion...against a hard fought battle...after a long, excruciating, physically demanding, and soul-sapping battle.

They might just be reveling in victory. 

Which only earns them angelic status, if you want to go the flaming sword route...which, I wonder if it gives you as much pause, as me?

31 for 21: Awareness is a stupid word.

Awareness is a stupid word.

There, I said it.  This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month. 

I know this is silly, since I just promoted Childhood Cancer Awareness Month.  But it's a little different, stay with me...

Some awareness months make more sense.  Like:  "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken."  Breast cancer, heart attacks, prostate cancer...stuff like that.  Also, awareness that promotes being involved to help research funding, that is reasonable.

Others are dumb.  "Hey, something like this exists outside of you and your circles of 'normal'."  Most people already know that.  You know how I know?  Because my kid gets crooked looks whenever we go out.  Anywhere.  People are darn sure aware she is different.  They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception.  That eliminates only those who think they might catch her different-ness.

I am also aware that I am not 5.  I cannot catch being 5.  I understand what causes being 5.  I understand that being 5 is different than being 38. 

So.  Big whoop.

I confess, I am spoiling for a fight, a little, this year.  I am done begging for you accept that my gal exists and I am proud of it.  I am requesting that you choose to understand, and better your life for the knowledge.

If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.

Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life.  5 year olds can play with abandon.  They don't care what people think.  They can create anything, they suffer no barriers of why something could not work.  They get excited by things that you take for granted.  They get ecstatic about things that annoy you.  They aspire to do the fantastic.  Their imagination is limitless.  They are lucky.  You should aspire to incorporate their "joie de vivre" into your dumb, boring, "adult" life.

Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination.  It's terribly cool.  And you are reminded what you valued when you were 5.  You are refreshed.  (After you sleep off being tired from growing and changing so much, so fast, of course.)

Well.  Guess what?  Being with someone who has Down Syndrome can regenerate things in you, too.  They are awesome.  They are remarkably like other nice, boringly normal people. 

Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can.  But because the achievements in their lives were a little more like a Spartan Run, instead of a rolling walk through a meadow, their triumph is palpable. 

Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn.  They are also people.  Tired, pushed, and aware.  And they want to achieve what you do. 

Guess what?  You need to take this October to understand their training, their battle, and swear to come along side and cheer.  And sign on as training partners.  Offer experiential advice.  Offer support.  Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different.  See it as a sign that you should give your respect.  Offer camaraderie, not pity.  They don't need that any more than a rock in their shoe.  If all you are going to do is stick rocks in their socks and put obstacles in their way, get out.  And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.

So.  Forget awareness.  Sign on for appreciation or celebration.  Or accept that your life will be the less for not "accepting" them.

Childhood Cancer Wrap Up

I was a little brutal this month.






Usually I tend to focus on Elise's journey with Cancer.  I dwell on her treatment, the people who blessed us, her miracle and the impact that it has had on all of us.
http://superdownsy.blogspot.com/2013/09/cancer-thoughts.html







Last year, I listed names.







This month, I shared photos of our friends that lost the battle. 







Lost.







These are people who are in my periphery of thoughts often.  At least once a month, usually more.  And not as a passing thought, but really dwelling on them.







I know their parents must have them in their periphery on a constant basis.







Children are the most resilient beings.  And not just in life, but medically.  They bounce back with truly awe-inspiring magnificence.  You can ask any medical professional, in any specialty.

If they had anywhere near the money spent on research that adults receive, I am sure that there would be breaking discoveries on a nearly constant basis.







Out of all the federal/public funding in cancer research, less than 4% is spent on children's cancers.  Out of ever $100, only $4 goes to kids.  That is paltry.  And that is ALL forms of children's cancers...tumors, leukemia, genetic forms, brain cancer...you name it...






You can google graphs, the survival rates have come up with increased funding.  They come up when they have people believe in them enough to say, we know you can find answers.  We will help you.  That's what your $5 says when you donate to St. Jude while you are Christmas shopping. When you send $10 to AFLAC or Cure Childhood Cancer, you are standing shoulder to shoulder against every parent's darkest fear...and you are fighting.  Earnestly.







Do our kids not deserve a fight that is armed with the latest information?  Do they not deserve weapons that work against this monster?







Would you go into battle with last year's information? 






And yet, pediatric cancer patients do, daily.







Fund them.  Find a chidlhood specific group, check on their financials, and donate.  If you gave like the goofy ALS ice bucket challenge, you could give children full lives.  And that was a social experiment whim.  Imagine if you engaged and fought with them?







They could go into adulthood, warriors.  They would be the ultimate survivors.  Their families wouldn't have to listen to the what-ifs in the back of their minds...they would know who they would turn out to be.  They would have the ultimate purpose: living life and impacting others.






My Elise is a survivor.  She won her battle with 10 patients on her protocol.  That means that it was BRAND NEW INFORMATION.  But that was also 10 years ago.  And I believe that is still the standard treatment protocol.  It's working, mind you.  We can say 10 years later, that she is still free from relapse or secondary cancers. 


We have another friend that won.  Her name is Ashlyn.  She is a tiny little thing with a soul of a Navy Seal.  She won.  Thanks to random Christmas donations.  Or people like me that have too long a list of those that Cancer took from their parents...and want it to lose, every single battle from now to eternity.


You can make that happen. 


Choose a reputable group.  St. Jude.  Cure Childhood Cancer.  Your local childhood cancer chapter.  Beat it down.  Send it your coffee money once a month to them.  I don't care how small.  If everybody did it half the year, or when they remembered, you'd outspend the government.  In the BEST WAY POSSIBLE!!!

Talk to Me

Yesterday, Elise had her six month assessment in her outside-of-the-school Speech Therapy.  I always dread assessments these days.  I mean, I don't care as much as I used to.  It used to make me sick how far behind her peers she was.  The gap just kept yawning.  But I like to see improvements, and those have been snail slow and miniscule.  My only comfort has been that we were still moving forward.

 

 



 

But Yesterday, People!!

 

Elise has improved in Auditory Comprehension by 5 months in the last 6. I don't think we've had an improvement this big EVER. I mean, do the math for pity sake.  Elise is 11 years 10 months, and as you can see on the paper, she stands in the 2-3 year range. 

In case you haven't read a million of these assessment papers like me, in Auditory Comprehension, she moved from 3 years/6months to 3 years/11 months.  Practically bang on the money!!  This means that she is improving in what she understands when she is told something.

She only progressed from 2 years/8 months to 2 years/10 months in expressive speech, but it was still movement.  Also, her speech therapist confided that most of the cut offs were BARELY missed.  You progress by blocks of 3 questions, and if you miss the 3rd question, even if you get 2 correct, you don't move up to the next level.  So, Kathleen told me that there were several blocks that she missed by one, only, so her progression may be impressive next time, too.

I've been pleasantly encouraged that Elise has been improving in her speech and enunciations.  I hear the change, and far more importantly, I see others understand her much better.  And here we have legal proof, that her verbal prowess is not all in my head!! And it means if it's there in her comprehension, it's all up in her head, which means it will eventually make it out in Expressive Communication....someday.

I have asked several of my friends with older kids with Down Syndrome about their speech progression.  They have encouraged me a thousand million times over the years.  There are many kids with DS that progress with their peers, with a few enunciation issues.  There are some that start slow, but catch on quickly as therapy and peers move in their lives.  There are some that take their sweet time and really come into their speech in middle school and high school.  It appears that Elise has decided to follow that last path.  But that peace for me is that there is still significant hope that she will continue to really grow before adulthood...and she won't be like previous generations where they stagnate due to lack of involvement in their world.  Elise would never stand for that anyway.  Being low in speech has never discouraged her from chatting up people out in public.

I have to take this moment to say that online social media has been the best thing in the world for the special needs parents.  You have more access to information and to veteran parents than ever before.

Recently, I have even gotten some information concerning Elise's fine and gross motor plateau.  I am girding myself with information in preparation for entrance into middle school.  And I'm starting to look forward to outside OT and PT for her particular support. 

When Charlotte (my youngest) took her sweet time to potty train, I had several mamas giggle and say, "Well, I've never seen anyone in Kindergarten in diapers."  And I was encouraged.  When I have a conversation with a veteran mama of a young adult with Down Syndrome, and she keyboard giggles and says, "All the adults with Down Syndrome I know, can button their pants and tie their shoes and talk to friends."  Well, frankly, it has the same heartening effect. 

And so, we Keep Moving Forward.

 

(credit)

Bizarre Blessing

This is another TMI post.  Probably.  But it is also one that is where I'm at.

Willow is a girl dog.  My first EVER.  I have had dogs, but only ever boys.  Boys, you either fix or you don't.  And unless there are nubile girl dogs around, it really doesn't matter much.  Especially if your dog gets car sick or you keep them at home. 

Our vet wanted Willow to go through one heat before her spay.  (Which was not even a discussion, if Willow is going out with us into the community, she MUST be fixed.)  Something about it being healthier...which I never could figure out why, something about all her hormones being happy systemically.  Whatever.  They are the experts.

I didn't really give it much thought.  I somehow thought it would be a few days kind of thing, tops.  SO wrong.  It's more like 2 weeks in larger dogs.  Yay.

Also, it looks like the dog is having a period.  No lie.  Yuck.  She's also all PMS-y and wants snacks and to nap.  So yeah. 

Elise is still all over her and wants to drag her around all over the house, so I bought her some reusable diapers that you put maxi pads in.  Elise thinks this is great.  She's all about the diapers.  She likes to choose the color and helps me stick the velcro on.  I never would have thought that she would have noticed or cared.  But apparently, if it involves her "Lillow", nothing is outside of her interest.

 

The bizarre part of this icky story, is that Elise has no comprehension that she may "become a woman" in the next year or so.  I've told her sisters, because they ask All The Questions, All The Time.  But if Elise were to start menstruating, it would be a completely blind-sided attack that would cause her to completely panic.  And the depressing part, is that I can do nothing to prevent that.  She has no concept of abstract ideas that don't fit into her interests.  The beauty of this whole Willow-in-heat fiasco, is that Elise is up close and personal.  It has suddenly become in her realm of interests and is noticed.  I cannot explain it the way I have with her sisters, but at least she will recognize it and it will not be frightening.  She will have an aquaintance with maxi pads and the idea behind them.  And so Willow has unexpectedly smoothed the way for the next giant hurdle in life.  I swear, I cannot thank this dog enough.

Tea and the Acceptance Cycle

All aboard for some honesty, okay?

I was having a really hard day earlier this week.  I mean like asphyxiatingly Jonah hard.

I glanced up to see Amelia and Elise nose to nose, fighting over whether the show was over.  Elise said yes, since the music wrap up had started, Amelia said no, as she wanted to watch them dance into the credits...

And it hit me like a blow to the gut.  They are exactly the same size.  Exactly.

They should not be the same size. Elise should be talking about teen things and looking like a woman. She shouldn't be the same size as her 8 year old sister who is 4 years younger. She shouldn't be more difficult to understand than her 5 year old sister. She should have friends to call and text, not a puppy to play Doc McStuffins with....

(Which was super cute, by the way...)

Here's the thing.  You don't just accept Down Syndrome and all the disabilities that may or may not come when your child is born, and go on, never a thought to what might have been...the side paths sneak up and you have to re-deal with the now, every once and a while.  And it doesn't mean that it isn't worth it...or that you would do it differently...just that it's never done.

I have said repeatedly that I am glad that I am a bigger woman and that I enjoy being strong.  Ethan was tussling with Elise yesterday, and accidentally picked her up more than usual, and realized how big she's gotten...and realized what kind of task I face every time I go into a store...as I literally lift her up and into the big part of the buggy 80% of the time...beyond the keening at lights or abruptly running off.  I am glad she is small of stature (4'6"), because if she was as tall as a few of her more docile friends, I'd be hard pressed to deal with her sensory meltdowns...and because of her profound struggles in public settings, I am thankful she has a visible disability.  As I've seen with her sister, who also has sensory issues, people aren't as forgiving with the invisible disabilities...

I do get flashes of what might have been.  She is my most athletically inclined child.  She really LOVES sports...but she struggles to play.  She is a leader and commander...but people struggle to understand her.  She adores babies and animals, and they love her.  She would have been the consummate babysitter/pet sitter.  I hope she will find a niche that will give her responsibility and independence in an area that she thrives in...but for now we are still looking and supporting and training.

Sigh.

I know this a little bit of a dark post.  But it's not all gumdrops over here.  And that's okay.

We walk on.  And enjoy the puppy tea parties.

A Letter to Myself...and all those who are trying to sort their lives.

The Blog Hop Prompt this week is a Letter to Your Younger Self.  What would you go back and say?


Nothing is wasted. 

I know that so many of us roar through life looking, searching for the grand moment.  We all search for the moment where everything clicks together and makes sense.  We all want to know that the struggles were not for nothing.  For as hard as we fight, we want it to Mean Something.

I know that that Moment is hard to sort.  I know that sometimes it comes to us early in life, in a vision or life plan.  Sometimes we stumble and get a flash of it.  Sometimes we are forced to wait and look back to see how it all fits together.

Education, therapies, struggles, our own disabilities. 

I just want to take this moment to say:  Everything eventually gets used.  For you, for your kids, for friends and your friends' kids.  You can smooth other people's paths.  You will get to see the entire spectrum of life. 

(Credit)

 



Like a prism of light, when you are forced to slow down and break everything in life down to manageable bites for yourself, for Elise, you can see each individual color and the magnificence and beauty of all the bits.  Even the bits will become more amazing and more beautiful.  The weight of what rests on the simple building blocks will make them more treasured.  More magnificent.

The hours "wasted" on other paths, on schooling, on volunteer hours, on experiences on the emotional blood, sweat, and tears...they will be accessed for other reasons.  You will have a library of experience and understanding to withdraw from.

You will be able to see the progression of your own life and understand the progression of what has happened and what needs to change for yourself, in order to come along side to support others, in order to gird your loins to join the battle of change. 

You, and your socially inept and painfully awkward self will have been forced to understand, to breakdown interactions.  You will learn how to propose change in the most effective manner.  Because you came in too hot and argumentative, and you watched people bow up.  Because you yourself felt crushed under forced/regulated change, you will understand how to suggest change gently but word it persuadingly.  You will come to know how important the manner of communication is.  Which is funny, because that's always been the biggest struggle.  But having to break down the nuances of communication and people's receptive communication has made you hyper aware of how to say things....and that no longer makes you weak, it makes you powerful. 

 You have fought in big battles before, and you are brave enough.  Your voice matters, and it needs to be said.

My View Is Upside Down and It's Cool (My Connection with Disability: An Introduction)

I decided to participate in a Blog Hop.   I don't always even though it's a neat idea, because as soon as a subject matter goes up, my brain shuts down and I sound like a stuttering squirrel...and it usually morphs into other subject matter that no longer has any application on the original tag line.

This one is interesting on several levels for me.  I am always curious about my fellow bloggers' stories.  I have also bumped up against the fact that several folks have shared the not edited versions of their stories, and have offered advice to me and friends that I would never have known to go asking about.

SO:

"My Connection with Disability: An Introduction"

I have muddled through bits of my own story before.  I am not super comfortable with sharing all that mess...and so I only let out bits...and edit...  I am going to try to shrink it down a bit for you.  And frankly, it's going to be a little out of order.  Because that's how my story actually goes...most of the time.

Ok.

I am a former inclusion teacher.  I got interested in this before I actually knew I had issues. 

I was in middle school when I read a few books that were written by people who had disabilities.  And they spoke to me. 

That's how I got a lot of my information growing up.  I didn't go around asking...I went wandering in encyclopedias, dictionaries, and card catalogues.  I would cross reference.  I would read more.  I could lose whole weekends in the encyclopedia.  I shudder to think of the black holes I would have fallen into if I'd had access to the internet before college.  I mean, I am jealous of the information adventurers now, for the ease, but I don't know if I could have extricated myself to rejoin the real world.

I had opportunity to volunteer in a severe and profound special needs school when I was in high school, based on the books that I had read, I jumped on it.  I loved the kids.  I loved the teachers who worked there.  I was jealous of the therapists who worked there.  Their JOB was to figure out how to make the world accessible to the kids and how to make it make sense to the kids and to lure them into trying it.  It was like a giant physical and emotional puzzle box.  I loved it. 

I recently found my reflections I had to make when my time wrapped up there:
http://superdownsy.blogspot.com/2012/06/blast-from-past.html
While my wording was somewhat blunt, calloused, and CERTAINLY not politically correct, my passion was evident.

I had always chalked up my connection to disabilities to my dyslexia. (That I only figured out on my own in math in middle school.)  I felt that I had a taste of seeing things that others did not, a taste of struggle, and an awareness of how to tweak the world by 25 degrees so I could make it work.  School did not come easily.  Information was a passion, but the structure of school was stifling.  I always said I had senior-it is before I started high school.  I was ready to quit school and start the real world at 12.  I HATED school.  Now, lest you think that means I did poorly, no.  I did darn well, as long as I was handled loosely.

As I got older, I bumped up against my inability to understand why other people did irrational things.  I mean, I knew I was stressed out about things that were "silly" to my friends, but they would act on emotions, and my patience would completely cap out.  I was very abrasive in my dealings with others.  I would read books that would tell me in words how those irrational decisions would come to be made, and I would be able to give grace to the insanity that I viewed.

I suffered through college and opted into every alternative program that put me in the real world that I could.  I suffered through pre-therapy classes, stacking my science credits and volunteer hours in Occupational and Physical therapy.  I lost my battle for my GPA in Physics and I finally got my middle school teaching degree, and got a job.  I expected it to be in science.  It wasn't.  It was in a high school teaching Spanish.  I got it on accident.  I sort of got my minor in Spanish on the way through college, it was never my intention.  I just took classes for fun, because they weren't stressful.  I liked how the language laid on my tongue.  I enjoyed the lilting happiness that the sounds suggested to me, so I took whatever classes fit into my schedule.  My senior year of college, my advisor told me that I lacked a credit to get a minor, so I did.  It got me a job because there were not enough Spanish teachers in the county we moved to.  Eventually I was forced to move to middle school because of regulations, but that was ok.  I slipped into an inclusion suite, and I ended up attending every single IEP meeting I could, because I felt that the kids deserved every man on board they could get.

While I was in college, some information came out about my own elementary school.  I remember dealing with gargantuan anxiety in 1st and 2nd grade.  I remember being tested, so many vials of blood, because of my stomach aches and vomiting.  I remember being tested in dank, dark offices at my school.  I remember my parents being visibly stressed.  I remember being offered to go to 5th and 6th grade reading classes...I don't remember them telling my parents that I should have been medicated.  I don't remember them recommending to my parents that I should be placed in a self-contained classroom.  I do remember being pulled out at Christmas to be homeschooled.

My mother got her school diagnostician degree while I was in college.  She was adamant about putting me through the testing battery.  And she cried and told me how sorry she was that she hadn't been able to meet my needs when she had homeschooled me.  Turns out that I had Asperger Syndrome.  I had very little tolerance with this new label.  It didn't help me and I was convinced that she was seeing the boogerman in the closet. 

While teaching middle school, I had Elise.  She had a post-natal diagnosis of Down Syndrome.  And has had a laundry list of medical issues to go with that...and I have met TONS of people dealing with differing diagnoses in the waiting rooms of specialists.  And because of my odd wiring of social function fringes, education, and medical education...I'd ask questions...so many questions...and because everyone is bored in medical waiting rooms, people would answer...and I have received so many stories and so very much information...

As Elise has gotten older, the label that I have had the most struggle with is not the Down Syndrome, it's the Sensory Processing Disorder.  She has never gotten a formal diagnosis because the Down Syndrome takes care of all her therapies for that aspect of her life.  She has struggled and struggled, with sensory defensiveness (actual medical term in her chart).  Her therapists have all concurred with that diagnosis (at the least) and her pediatrician includes it on all her therapy paperwork.  During difficult flares, we make appointments for years out with autism groups, but they've never worked out to attend because you have to make them so far in advance, and she invariably is sick and is dealing with bigger or more immediate issues on the days we are supposed to go.

My second daughter is battling the Dyslexia Demon.  My youngest daughter is fighting the sensory battles...and she is deeply in...  My 15 year old son has ADHD and Elise has ADHD.

There is nothing like seeing your kids battle your demons to make you come to grips with the reality of your own disabilities.

I have ADHD (Actually the tester, when we went in for my son, told me that I really should look into taking the test so I could try out some ADHD meds.  True story.)  How I actually found out for myself is a little funny:  http://superdownsy.blogspot.com/2011/06/adhd-and-apples.html

I have Asperger's.  I have nothing but anxiety for kids I see around me on the spectrum.  Not judgement of their parents, mind, but genuine worry that that will be forced to figure out life around them the hard way.  Since entering the world of education and walking alongside Elise and my youngest, I see the therapies and supports out there for them and I am driven to tears of appreciation that they have that available to them.  That they can be themselves without being yelled at by teachers for be disruptions or smart alecks, when they just can't comprehend the information in the format that is being offered.  It is GRACE, I mean, I know it's technically education, but it is such a different path that can be taken now.  It's also why I panic when I see the school systems going more and more to pat tests...they can't even know how many kids will be sacrificed to the glorious cookie cutter...and how much we will lose by forcing them to look with the same perspective...I shudder to think how many Albert Einsteins we are telling to sit down and test well.

I have Dyslexia.

I have battled depression on numerous occasions.

And I have lived to tell the tale.  I am proof that if you are given enough tools, you can live life and enjoy it, even if it is not typical. 

I realize that not everyone's story is like mine, but let me assure you, between my own story and my story that is still being written with my kids, you don't have to live the life everyone else does to be at peace and genuinely happy.

Willow Speaks

I owe you all a Willow update.  She is still happy here, and we are still happy to have her. 

She has a stomach fit for a delicate flower.  She is apparently allergic or overly sensitive to something in dog food.  Which has resulted in me dealing with far too many "virus/infections" than I care to disclose.  That said, I've finally put my finger on her gastro-intestinal distress, and I mix up a batch of rice, chicken, pumpkin, and broth once a week, and then mix dog food into it daily, so she gets the nutrients she needs without getting sick.  I cannot even begin to tell you the mess and stress that put on me and Elise until it got ironed out.

During that time, Elise had taken to sitting outside of her cage and talking to her.  And talking and talking...it was funny.  They apparently bonded deeply from their conversations, because now they are inseparable.  Elise will put her on her lead and drag her all over the house and talk "through" her.  Willow just loves the attention.

Here's the newly cool part.

Elise is stuttering again.  Badly.  She gets so gummed up that sometimes her singing and tapping out past it wasn't even working.  Sing-songing her words and tapping the syllables used to be the silver bullet that always fixed it.  But when she talks to Willow, she does not stutter.  At all.

Even more interestingly,  Elise has taken to talking through Willow as Willow's voice to express her feelings.  Willow, shockingly, has remarkably the same feelings about everything as Elise.  She doesn't like veggies, she's hungry, she needs a snack, she wants to read, she wants to watch TV, she wants to see the same movies, she hates the "loud in her ears" as we have construction going on in the basement....and so on.

And she never stutters as Willow's voice.

Even as she is petting Willow, and for a while after, the stuttering either doesn't show up or resolves quickly. 

I spoke to Elise's Speech Therapist about this phenomenon.  Kathleen told me that Animal Assisted Therapy is particularly effective, and there is quite a push to incorporate animals as much as possible, because it really does have an impact.  The animals lessen stress, and smooth many verbal disfluencies.  Even if there are only pictures, computer animals, or animal puppets, they see many of the same benefits, and it is still referred to as Animal Assisted Therapy.

So.  Not only are we seeing a decrease in Elise's anxieties and stress and sensory issues, but we are seeing a huge impact on her speech that we simply weren't expecting.  Willow is a lovey and I leave you with some of out latest pictures of the "girls" together.

(Oh, and Willow got a haircut for the summer.  I was terribly afraid that Elise would panic and refuse to believe it was still her, as it made her look incredibly different. But Elise knew her baby and loves it as it makes Willow's fur even silkier.)

How We Get Early Intervention Wrong

This post is not isolated to Down Syndrome at all.  It is a blanket conversation about all Early Intervention programs.

Now.  Let me start out by saying that I think Early Intervention therapies are stellar.  I believe that they prevent a lot of frustration and more involved therapies in the future.  I furthermore believe that in many cases, helping kids to cope with their unique challenges before they are crippling is imperative.  This is especially the case with social, sensory, and communication challenges and particularly for kids on the spectrum. 

I had Elise involved with every early intervention program I could from the time she was 1-2 months.  You see, as a teacher, I read nothing but good things about the programs and was an enthusiastic believer in "The Einstein Syndrome".  (The theory that if you assumed that your child was a genius, and treated them with high expectations and offered stimulation, they would rise to the expectations.)  Since then, I have realized that positive expectations are indeed important, but there are many, many factors that combine to explain every child's personal development levels.

The first problem with Early Intervention is that many parents go into it believing that if they don't miss a therapy appointment, their child will be "fixed" and that all of their struggles with be eliminated if the parent is Doing All The Right Things.  This is not a real formula.  There are so very many factors that go into your child's development, that you cannot possibly guarantee anything based on regular therapy attendance.  It's just ridiculous.

The second problem is that you can forget to play and allow memories to be made.  If you think that regular therapy attendance is the official Key to your child's adult potential, then taking off a day for emotional well-being is simply not an option.  And God forbid you take a summer off and play in the grass and the pool.  And do you know how exhausted that makes you?  Much less your child?  Much less your child's siblings?  Toys are just for playing sometimes, not always "neurological stimulation".

The third problem is that they are only made to mediate problems.  They cannot "fix" everything.  They cannot combat physiology.  They cannot combat medical problems.  They cannot entirely rewire the brain.  They only promise to offer strategies to make things easier in the world not made for them.

The fourth problem, and the most important, as I see it, is that we are trying to jam a child into a mold.  If you are paying attention only to the first and second issues I put out, then I think you may have missed the point of the therapies that your kid qualifies for.  The therapies are tools to reduce distress and anxiety and give them the ability to communicate their feelings and ideas with the world.  If you are trying to "fix" your child so that they can look, act, and sound like everybody else, then you will miss out on the best present your child can give the world.  A fresh perspective.  Dyslexics, kids on the wide spectrum, kids with ADHD, kids with Down Syndrome, gifted kids, kids with learning disabilities, kids with physical disabilities, they ALL have a unique view of the world....therapies are only the manner to give them freedom and a voice.  That's all.  Stop trying to squash their voice into a neat box, their view can offer more than you ever comprehended.  Accept and enjoy it.

And if you have to take the summer off from therapies to reset and hear that voice? 

Do it.

Summertime and the Living Ain't So Easy

I have friends who are mad at me right now.  I don't think I've called anybody back for anything since we got out for the summer.

It's summer and I am still running around like my head has been cut off.  We have wound up with no food in the pantry twice.  I have had my mother bring me toilet paper and I have bought criminally over-priced toilet paper and milk from the gas stations and quick stops.

Partly because Gabriel is working and cannot drive, and partly because Elise and summer don't get along...

Elise does not play.  When she thinks she does it usually involves a pen taken to her arms and legs...or full on destruction.

She misses her friends.  She misses the routine.  She hates getting in the car to take/pick up her brother.  She hates shopping.

Right now, every time I say no to anything, she starts screaming that she's "gonna tell Daddy"...and then she weeps on the floor...  Sometimes, this goes the other way around.

I have been doing battle with summer, and shipped Elise and Amelia to grandparents for some alone time for themselves....and I have been hunting down ants and millipedes (we've had an infestation)...and cooking for Willow as it appears that she is allergic to dog food.  Yes.  I really said that...and then just running around doing errands...I guess...I don't feel like I ever stop, and yet I don't have anything good to show for it...I do a lot of picking up after Elise...

I had planned to go to my parents' pool and my friends' down the road, but I've also been fighting headaches/migraines and the rain keeps promising to come.....

We hope to pack up and just GO somewhere for a vacation...at some point this summer...as Ethan can't not work unless he literally can't...and I am 100% sure that this is something we all need...so fingers crossed...

Also, some pretend school will be nice...and summer review won't hurt anyone....

How you fit in your pants.

When Elise was little, she wore jammies and the most adorable bubble onsies.  I had to put socks on over her jammies, to keep her feet in the footies, because her trunk was pretty long, compared to her short little legs.  When it got cold, she wore yoga pants, with the tops turned down or capris.  It really wasn't too tricky.  I had to sew in her waist, cuff her pants, and tweak some of her stuff. 

I started learning how to tailor very low grade about 2 years ago.  Real tailors would probably be horrified.  I turned clothes inside out, and safety pinned the stuff that needed to go.  Then, VROOM, with my cheapie beloved sewing machine.  The folks who read the labels and bought blind in Goodwill have probably cursed me to multiple generations by now.

I gave up on buttons and snaps about a year and a half ago, because she simply HAD to learn to potty alone.  For two reasons, 1)  she needs to learn to independence and 2)  the more independent she is, the safer she'll be.  I can't help but think that the percentage of people with special needs who are sexually assaulted, would drop a bit, if they can take care of their own toileting.  Alone.

People with Down Syndrome are built a little different than typical folks.  They have different proportions than those that the clothing industry are producing for.  If Elise was more of a dress and tights kind of girls, this would not really be an issue.  But if you want slacks or jeans or shorts?  Well.  Lets just say things get difficult pretty early in. 

As I was whining about this, Ethan told me that I should start designing clothing for people with Downs.  About 6 years ago.  And again, 4 years ago.  And yeah...so on.

But a superb grandma beat me to the punch.  Karen Bowersox.  She started a really excellent company called Downs Designs.  She has made several designs and cuts and styles in expanding sizes...adults, kids, youth, and teen.  She's making jeans, shirts, and capris.  And recently, she has added a new line of jeans, NBZ Jeans, for men that are soft and stretchy with no fasteners.  Personally I think this is brilliant for people with autism, other sensory issues, and many other physical disabilities.  They can look more mainstream, without resorting to sweatpants, etc.  And again, can I emphasize the more independent a person is and appears to be can protect them from predators?

Downs Designs has above and away the most stellar PERSONAL customer services.  Karen, herself chatted with me after hours about sizing questions.  She employs Skype to help with sizing and fit support.  Really, above and beyond any company I have ever dealt with.

Sadly, even though I placed an obscenely massive order of different cuts and sizes, nothing fit Elise right.  So. I'm back to square one.

As far as jeans, I have gone to jeggings exclusively, the wider the elastic at the top, the more secure they are, and the less I get *ahem* plummers' issues.  Shorts have gotten exponentially more difficult.

Today, I wandered into a parallel universe on a whim.

Maternity pants wander between scary huge belly panels and wide elastic bands.  I have contemplated getting maternity pants, and putting my own waistbands on them, as they are already cut under the belly, with a very short rise.  (And she will never tuck in a shirt because it sends her over the edge more quickly than tights or bunchy socks.)Today I bought a pair of shorts with the wide elastic band, which was all silky soft.  And would you believe those bad boys fit her like a dream??  They stayed up, because the elastic helps hold them in place.  They didn't make her lose her mind, because the band is silky and doesn't bunch, wrinkle, or cut.  The bottom part is nice and stretchy and superbly flattering.  And NO fasteners!!!  She is cute and perfectly independent.

(please excuse the "dressing room" mess!)

Can I get a whoop, whoop??

In related news, she has managed to get her shoes and socks on alone since Tuesday.  She is cruising for awesome this week!!

The Value of Stories

Elise has a lot of tendencies that spectrum kids have, one is that everything is taken literally. 

It can frustrating and funny.

It is very difficult when you are talking about things in a more spiritual realm.  It is particularly difficult if you want to discuss religious aspects of life.  Those of us who believe that the religious realm is fact, come up on an very abrupt wall of inability to comprehend. 

You know how there are no nebulous theories to a 2-3 year old?  Well, when you are stuck there mentally for longer than others, its hard to figure out how to explain it so it makes sense.

I have always been a firm believer of:  "If you can't explain it simply, you don't understand it well enough."  ~ Albert Einstein

With the kids, and Elise, up to a point, I don't think you really need much more than "Jesus loves you."  But the longer life went on, and she didn't really progress past the toddler comprehension, the more it laid heavy on my heart, that there had to be a way to explain the Easter and Christmas gift of Jesus in a way that she could understand it. 

Jesus himself, was a big proponent of simple stories that made huge truths more comprehensible.  In Christian circles, there is a lot of throwing around of parables, and using them primarily with kids.  There are sappy and annoying definitions of what parables are...they have always irritated me and I refuse to even quote them here, because I am still of the mind that if you can squash phenomenal theology into a off-the-cuff meme that makes you sound condescending, then you've also managed to destroy it for yourself.

ANYWAY, as I said, Jesus often took real life situations that everyone can relate to, and tied it to a truth of life.  In his simplifications, it wasn't offensive, and no matter if you believe in Jesus/the Bible, you can't fault the honesty and wisdom in them.  Which is why the default on Jesus is "Yep, he's a great teacher."

SO.  He didn't give me a parable in the Bible for his death and resurrection.  And neither did my good buddy, Paul...who also was a fan of stories that explained huge truths... 

BUT C.S. Lewis did.  In the series of Narnia, we have beautiful stories that may or may not have been meant to explain bigger truths.  They are deliciously written, and regardless of your theological leanings, I highly recommend you grab them, and give them a whirl.  And if you aren't a reader, Disney has managed (for once!) to recognize a story that didn't need any dabbling...and the Chronicles of Narnia movies are stellar.

(credit)

 

But, Elise is completely taken with Aslan, and all the characters.  She is completely sucked in and enchanted with the story.  She understands it on a very organic level, and she loves it and feels it all deeply.  And, Folks, she can discuss it on a level that she cannot vocalize Jesus on.

And so, we have a tradition of watching at least the first Chronicles of Narnia movie on Easter weekend.  And we will have shocked gasps about the story of Jesus, "Just like Aslan!!", periodically.  And the books are even fuller of "Muchier Muchness"...and I, too, have taken to feeling the gift of Easter on a more organic and less theologically structured manner...and the Muchness of Jesus has struck me more and more deeply every year.

(credit)

 

 

And, I wrap up with the same offer and I put out on the blog's Facebook page:  "Jesus used parables to explain The Important Stuff, take a page out of his book. Figuratively and literally.

Lots of love from us. Please don't hesitate to message me if you want support or want to ask any questions about Jesus, Aslan, or Easter!!"  Emails and or messages are more than welcome.

 

 

"It isn't Narnia, you know," sobbed Lucy. "It's you. We shan't meet you there. And how can we live, never meeting you?"
"But you shall meet me, dear one," said Aslan.
"Are -are you there too, Sir?" said Edmund.
"I am," said Aslan. "But there I have another name. You must learn to know me by that name. This was the very reason why you were brought to Narnia, that by knowing me here for a little, you may know me better there."
C.S. Lewis

 

Happy Easter! 

 

Here's my gal yesterday, enjoying a quiet moment with her brother!

 



 

Easier than Discrimination

Nowadays, it's not acceptable to discriminate and segregate.  There are laws in place.  They protect color, religion, disabilities, and really almost anything you can think of.

They don't, however, protect against mean.

You can pretend to help and allow a "them" to be "a part" of you.  You can say the right things, you can publicly posture, you can go through the motions.

However...

You can make things too hard to be included.

"Sure, you can go to our *preschool, daycare, church, school, childcare, sports facility, day camp, and so on* except you will need to help us, help you with your *hard* kid.  We need a personal aid, all their medical information, all these safe-guards to help us *protect* you child, because we *just want to help.*"

So, to secure this opportunity, you obtain more paperwork than insurance, the IRS, and private school combined, to submit, so your kid can do what normal kids get to do for your name, address, and $5.  And they come back with new *reasonable requests.*  And this is literally added to the crazy sheaf they already asked you for, also, interestingly, it's illegal in many cases.  It violates The Americans with Disabilities Act.  If you ask, they usually give you some kind of rigmarole about protecting your kid or the others there, or it being a insurance/liability issue.

Here's the thing.

Sometimes we, as parents of kids with disabilities, will go along with it all to a point, so our sweet babies, can receive quality time with typical peers for their long-term benefit.  Sometimes we go along to a point, at which point, we realize that even if we win, our child will never be accepted...and they will in no way benefit from being let in, but not accepted.  Sometimes we call them to toe the line...more for shame, than expecting that this information will trigger long lost chivalry.

The problem is, if you choose not to force the issue, to protect your child from the exclusion, then they win and nothing will change.  If you do choose to force the issue, then you've forced your child to be on the front line of a civil rights war.  And do they really want to be a "point" as much as a kid with friends like everybody else? 

It's a rough line.  To make the world better for them, they literally have to be a part of the battle line.

That's a hard place to be.

Sometimes I am glad to fight.  Sometimes I get tired.  Sometimes, I tell myself that I am making life better for my daughter.  Sometimes, I wonder if it's worth fighting for people to take someone they so don't want. 

How do you change hearts?  You can make laws.  You can enforce those laws.  But until people realize that everyone has the same hearts, wants, dreams, and decides to get to know people as PEOPLE, then things won't change...  And the only way they will get to know someone, is to lock them up together...legally if need be...and then...as friends, things will change.

That said, don't expect me to stop rattling cages...but since I am mother, it's also reasonable to expect that I will pick my battles...

But there will be battles.

Beach Bunny

We bought a vacation package at a fundraiser back in February.  It took us until the Christmas holidays to use it. 

I'll grant you that the beach in December isn't super toasty.  But it is certainly better than actual winter...even in Georgia.

All my life, we had some kind of plan for vacation.  Something we were going to do, something we wanted to see.  As a kid, my mom and dad were the types that had vacation itinerary, in which days were mapped out, if not hours.  At the first of our marriage and Gabriel's little-hood, we had skeleton plans, we knew the trip time, we had a few things that we wanted to work in...things have gotten progressively looser...but this time, we literally didn't look at the trip until we got in the car.  We had no idea of anything at our destination.  We Googled the directions when we got to the interstate.  No kidding.

We got there late at night, slept, got up, ate what we brought and then went straight out to the beach.  Then we drove around to get our bearings.  And then we just decided to decide as the days went...and it was the most purely healing vacation ever.  I mean, I don't want all of our vacations to be like this, but it was timely.

Amusingly enough, a good friend from home checked in at a local restaurant and we met up with them for an evening...

We watched TV, dug in the sand, walked, slept, and generally piddled.

This is the definition of heaven to Elise...She adores the beach.  She sleeps better, walks more, and is calmer than she is anywhere else.  I literally don't need to give her the ADHD medicine when we are at the beach.  She has no impulse control at home, but at the beach, all synapses are firing at a normal speed.  It's bizarre.  She doesn't suck her thumb from stress, she doesn't eat constantly.  It's like the sand and the wind and the sound of the water that makes my skin tired, neutralizes all her cravings and crazies...

 

 

The way the Toddler Tourette's is going concerning having to get in the car to go pick up her brother, eating supper, and brushing teeth, and I'll be pricing beach houses by the end of the month...

The Year I Missed It

This is posted over at Down Syndrome Blogs:

Every year, I have celebrated Elise's Heart Day, except this one.  It has been 12 years since she had her open heart surgery repair.  Twelve.  She's 11.  It somehow slipped by me this year, as we were celebrating at the orthopaedist office being freed from her boot after breaking her foot.

When she was born, we were surprised by the fact that she had Down Syndrome.  She had 2 ultrasounds while I was pregnant, one to confirm that I was pregnant with her and one to tell us that she was a she and that she was breech.  At the second one, they tried to tell me that she wasn't as far along as previously thought...because she was so tiny.  And they spent an inordinate amount of time looking at her pinky finger.  When they finally confirmed that she had the usual 2 joints in it, they looked no further for any evidence that she wasn't perfectly normal.

Had they looked further, they probably would have caught the Down Syndrome.  Had they looked further, they would have discovered the mess that her heart was in.

When she was born, she was shuffled home with massive apologies for missing the Down Syndrome.  And by apologies, I mean my obstetrician almost wept for not catching it, when he suggested that "other people liked to adopt Those Babies" and we didn't have to keep her.

At the pediatrician, they seemed in over their heads in dealing with Down Syndrome.  They had to look up everything like she was a foreign object, rather than a standard issue baby.  At her 2 week check up, they caught a slight murmur and suggested that we go in for some testing and visit a cardiologist, "just in case the murmur didn't resolve".

Our cardiologist was the kind of guy that gives that vein of medicine a bad name.  He was arrogant.  He didn't listen.  He disrespected us at almost every turn.  I was still barely keeping my head above water with her diagnosis at 3 weeks out and didn't have the mental fortitude to slap him down or get another doctor.

After a sonogram of her heart and an EKG, we were graduated to a diagnosis of a small hole or two in her heart in the middle dividing muscle.  They still believed that they would resolve and she was sent home.

She was still a minuscule baby.  She hadn't hit 6 pounds yet and she hadn't gained back the weight she lost right after birth. 

By January, she still hadn't wrestled her way to 7 pounds, and she had a second routine cardiology appointment, and she was pronounced in Cardiac Failure.  Suddenly the medical world started literally buzzing around us.  We had to "buy" as much time as possible.  I was to pump and mix into the breast milk both preemie formula and corn oil to get her enough calories to "live until surgery".  We were praying for not only survival, but we were praying desperately for a few extra ounces of fat to help her withstand the cracking of her chest and the toll the surgery would take on her tiny body.  The pressure was so high, and she was so exhausted keeping her heart pumping, that I was literally pouring her high calorie potion down her throat with a syringe as she had no energy to nurse nor to suck on a bottle.

Because of her size, she needed to go to a hospital that specialized in heart repair surgery.  We were given the option of Vanderbilt and Cincinnati Children's.  We jumped at Cincinnati, as it was exceedingly reputable, and I had family there.  And not only was it family, but my uncle was a doctor, had the inside track on everyone's reputation.  Based on his research and advice we chose our cardiac surgeon.  And I cannot say enough good things about Dr. Peter Manning.  Not only was he stellar technically, but he was an amazing man with a warm and encouraging bedside manner.

At the EKG and sonogram there at Cincinnati, we discovered that the holes were bigger than originally thought, and that there would be a need for patching, not just stitching.

 

And I noticed for the first time that a heart ultra sound looks like a butterfly.  And that as it pumps, it looks like it is flying.

They expected that her surgery would last 3-4 hours. It appeared to be a fairly easy patch job, with the only expected difficulty being that she was so tiny.  We had successfully clawed our way to 7 lbs, 3 oz...at 4 months.

The surgery lasted just over 6 hours.  They got in and discovered that it wasn't a simple patch job.  That both the EKG and the sonogram had missed just how many and large the holes were.  That the holes were responsible for her having to work so hard to live...and why growing was simply a bonus miracle.  She was patched up for both an ASD (atrial septal defect) and a VSD (ventricular septal defect), and her mitral valve was also flapping loosely allowing the blood to wash back into the heart, and so he stitched that up as well, but he was very cautious in not allowing that to become too tight and cause any other problems that would lead to another surgery.  She still has a tiny amount of cardiac reflux to this day...but it's not slowing her down.

The real miracle is this:  Open Heart Surgery to correct malformations has only been performed since the mid 1950's.  Even into the 60s-70s, a child with Down Syndrome was recommended not to over-exert themselves as a primary form of treatment for heart malformations.  Into the 80s, doctors could and would routinely refuse to correct heart defects on the grounds that it was a wasteful surgery that was unwarranted.  There is even an article in the US National Library of Medicine which addresses the fact that parents were being steered away from surgery based on Down Syndrome as recently as 2001.

The year of her birth was 2002.  Her surgery was February 2003.

The surgery was visibly a success from the moment we saw her, we knew it to be so.  Before the surgery, she was white as porcelain, and had no energy.  She slept all the time.  She never attempted to roll over or do any milestones babies her age did.

When we saw her after the surgery, moments after being moved to the CICU, we saw pink cheeks for the very first time in her life.  We saw her fighting her restraints to yank off the breathing tube under her nose.  The nurse greeted us with "I swear, she is acting like she'd like to jump off the bed and run down the hall!"

And as soon as she got home, she a made up for lost time.  She couldn't get her eyes wide enough.  She couldn't try hard enough.  She couldn't LIVE enough.

And that was the first chapter of the butterfly that is Elise.  Since then, she has fought bigger and bigger battles, but thanks to that heart of courage of hers...she is always the victor.