Itty Bitty Living Space

Today I went on a bit of a rant on Facebook.  I'd like the chance to explain myself a little bit.  Give some perspective.

My Facebook post:
"I don't particularly love having to pick up my kid in the handicapped pick up in the back parking lot because it means my kid is not ABLE to sit like yours and wait without being unsafe. But I do know that when I was forced to pick up in the regular carline, I got hands flailed at me, cussed at, and flipped off for taking so long.

Imagine my irritation at getting flipped off, cussed, and flailed at for trying to save you time by picking my kid up in the handicapped area.

DON'T be a TURD. Or I'll take pleasure at gumming up carline.

You'll mess only your own nest."

I get the big arm flail...you know the one...the one that asks WHAT ARE YOU DOING? with exasperation...about once a day in carline.  I get flipped off about once a week.  Today was a first time event this year, where not one, but two cars cut me off and blocked me from going down the other lane to avoid the carline, so I could go around back to get Elise.  I am not sure what they thought they were proving by doing this, especially as the principal goes around back and makes sure you are supposed to be there if there is too much traffic in the back.

Here's the thing.  I don't feel that IT'S MY RIGHT to get special treatment.  I prefer for my child to get help to remain safe and for us to be able to take our time without duress at every transition.  Especially as it is truly her body (and sometimes mind) that requires more time to plan movements as she gets in and out of the car.  But I don't WANT to block everyone else as my life moves in slow motion.  My life always moves in some kind of time subset from everyone else, I am used to it.  I cannot plan what will make a day go sideways, though, and if that happens, it's going to get weird fast. 

As a matter of fact, a friend posted up a comedian talking about his son with autism.  He said something along the lines that he never knew "how to describe taking care of a child with autism....  But during a festival, it all became very clear.  It's like taking care of your very best friend, after they have done waaaay too many shrooms.  While you yourself are on a moderate amount of shrooms."

Now, Elise has not been diagnosed with autism, but she does have a lot of personal similarities.  And I have, on more than one occasion, likened my life to Alice in Wonderland.  Things get keep getting weirder and weirder...and you know it's weird, but everyone that you are dealing with makes YOU feel like you are the weird one in the situation.  You are forced to change yourself and your expectations so many times, that you find yourself just as crazy as everything else appeared to be.  (And, for the record, I also said, all through high school and college that I absolutely thought Lewis Carroll wrote it while high.  You know the drill, right?  He thought he was being suuuper deep, and was smart enough that he managed to tie all the crazy to actual happenstance, political or otherwise, but it was still completely wacked out.  Yuh.  That.  You've all seen that guy once, right??)

EEEEnyways, back to my story, I am truly doing you a favor not to tie you into my brand of crazy.  So if you don't have a child with special needs, you may think that I am getting these absurd special privileges.  But let me explain this to you in a nice, tidy little nutshell. 

You know the scene in Aladdin where he tricks Jafar into wishing to become a genie?  Because Genie explained to him the paradox?  (https://youtu.be/SfTfXLLJlzM)

Well, the allowances may appear to be
"Phenomenal cosmic powers!!!!"

But to us, as special needs parents, it's really just allowance to get tied up into our
"Itty Bitty Living Space", where our child feels and IS safe.

 

So, do us a favor, and be patient.  Please assume that things are more complicated than they appear on the surface, because they usually are.

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)

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.

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.

The Magic Trike

Elise was the reason my 7 year old didn't learn to ride a bike until she was 6.  We had given up on bikes as a family experience.

We gave up on bikes around the time her weight went over the trailer limits...and our muscle's coping options...she is terrified of the insecure-ness of bikes.  She is petrified of even the exercise bikes upstairs.  I bought her one that I hoped she could use for exercise alone and to get her used to bikes in general, hoping we could eventually graduate to a *real* one.  It was seriously ugly.

I have been chatting with my local bike guy about building her a tricycle.  Like this:

We have spent several sessions where I realize something and go back to him to see if it is feasible and how much it would cost to make it work. 

We were talking a minimum of $500.  Probably more.

Because this is a rather large cost, we had opted to wait another year, until she was 12, as she will probably be within an inch of her final height.

2 weeks ago, I found a listing on a Facebook local yard sale group for a trike.  It looked so cool, and it's cost was less than half of the Amazon listing. 

http://www.amazon.com/Mobo-Ultimate-Wheeled-Cruiser-20-Inch/dp/B003VGFN7K/ref=sr_1_12?ie=UTF8&qid=1388091429&sr=8-12&keywords=moto+trike

I chatted with the seller and Ethan and I decided that it was such a cool option that had a HUGE possibility, and we decided it was worth the trial.

So I broke my neck, to get an hour across town to buy this bike, when I should have been getting ready for Christmas.

Elise is so hard to buy for.  I spent very little on her for her birthday, because it makes no sense to spend big for ceremony's sake, and I decided that if she discovered anything during the year that she got excited about, that I would make up for it then.

Because the Mobo Trike is about 6 inches off the ground, it's rather like a bike and a Big Wheel got married and had a baby.  Because of its low profile, it is significantly less wiggly and scary sensorily.

The handles are a little different, so there was a learning curve.  But she had ridden a trike with a similar driving mechanism when she was in pre-K.  It took about 3 minutes to talk her onto the bike, 5 minutes for the steering idea to make sense, 15 minutes for her to remember, another 10 to remember the hand-brake, and 15 minutes for her to not slam her feet down on the pavement and yell "Scary!!   Fast!!"  There will need to be another few sessions to remember you always have to peddle in the same direction, but all in all, it was pretty much a miracle.  Easy, fun, and almost a typical experience.

She did great, and I plan to take her to my church parking lot, and set her free sometime over Christmas Vacation.

Here are a few pictures for you to enjoy, a helmet will be added next time, but with all the sensory issues, and that she was unlikely to fall off, it wasn't as necessary for our start trip.  In 20 square feet of driveway.

And that, Ladies and Gents, was darn close to a Christmas Miracle!!!

I hope that your holidays and Christmas are lovely and full of good memories...and we'll check in again, soon!!!

Here it comes! The Annual Beg

Every year since I started this blog, each November I begged special needs bloggers for guest posts.  To tell their stories, link them up, and make it more of a community rather than an informational resource....

This year is no different.

I would love to wrap up 2013 with a big cheer and "Yay Us!!!  We survived and thrived another year!!"

I would love for any and every blogger or even if you are a reader...please write your posts and submit them to underwater9800 @ gmail.com (no spaces, just protecting myself from mountains of spam!)  I will, of course, link your blog to your post...

Tell your story.  This is not just for Down Syndrome.  This is for any parent who is fighting the good fight for their child.  This is for anyone who has graduated to being their own advocate and wants their voice to be heard!

Share your proudest accomplishments from this year!

Ask for suggestions for your latest battle.

If you want to just tweak an old post, dust off an idea from out of the back of your head, add perspective, do a picture and a few sentences, or do a questionnaire (I have one that I can send you!), PLEASE get them in to me as soon as possible...or as late as November 29th!

Please join me in raising your voices that you are Thankful You Are Not Alone!!!

2010 Project:
http://superdownsy.blogspot.com/2010_11_01_archive.html

2011 Project:
http://superdownsy.blogspot.com/2011_11_01_archive.html

2012 Project:
http://superdownsy.blogspot.com/2012_11_01_archive.html

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiastes 4:9-12

31 for 21: Five and Dime

Five things I hear too often:

1)  She doesn't look like she has Down Syndrome.

Yes, she really does.  But that's okay since she does have it.

2)  Elise would have been so pretty if she didn't have Down Syndrome/Do you ever wonder what she would be like without Down Syndrome?

Yes.  But I can't change anything and you would never ask someone else if they wonder if they would like parenting better if their kid was smarter or better behaved. It's still not okay.  And I have a sneaking suspicion that she would be exactly the same without the chromosome.  Spunky, witty, funny, hard-working, tom-boy, athletic, and stubborn.  These don't require 46 chromosomes instead of 47 to be true.

3)  She seems like she is high functioning.

Again, I don't say, "Well, your kid seems to be reasonably smart."  The level of independence does not give her credence for living and having a fulfilled life.

4)  You handle her so well.

Some days.  But sometimes we have ugly truth days.  But all the time, I love her and parent her...the same way I do my 3 other kids.

5)  What do you think her future will hold?

I don't know.  But you don't know if your kid will be a doctor/lawyer/investor/inventor, and independently wealthy; if your kids will boomerang back to your basement; or if your kid will wind up in prison, either.  So we're even.


Five things I *WISH* I heard:

1)  I love how Elise tries so hard to_______.
2)  Elise is beautiful/Elise has beautiful hair/Elise's eyes are striking/She looks so much like you
3)  Elise is persistent.
4)  Elise loves so hard/faithfully.
5)  Elise is so perceptive.

If I had a dime for every time I heard "Elise looks like you", I'd have 50 cents.  I really wish people had the courage to say it.  I wish they would note the things that make her awesome.  I wish they would encourage her strengths.  The same as they do any other kid. 

Because she wants the same as every other kid.  She wants you to like her for HER.

31 for 21: Abuse and Awareness

I know it feels like I come back around to this regularly...but this is something that every parent should be aware of.  And parents of kids with special needs, even more so:

In 2011, I addressed the legitimacy of my deep-seated paranoia about protecting my kids.  I spoke of the statistics and the importance of watching your child and communicating with them, and responding if the unthinkable happens.  HERE

Just this March, I went on a complete tear about abuse and what YOU should be doing if your Down Syndrome "Awareness" is really "Real".  How it's YOUR voices and your conversation with your kids and your votes and your phone calls that make a difference to protect those that need it desperately.  HERE

I want to reiterate that it is YOUR voices that must be heard when things happen to children that no child should suffer and NO ONE should close their eyes to.  Like HERE just this last September in Florida.

This morning, another friend shared her own path in dealing with the statistics and the consequential responses, at The Bates Motel...and she referenced this really excellent list of things that you can do to protect your child.  Typical and those with special needs.

Praying for Parker originally shared the list:

"1.  Start early.  Introduce correct terms for body parts.  This way a they can report clearly if someone engages in sexual misbehavior.
2.  Introduce body privacy.  NO ONE is allowed to tickle or play around with the private parts of your body.  To counter any attempts at or*l s*x include the mouth as a private body part.  NO ONE is allowed to put anything part of their body into your mouth.
3.  Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.
4.  Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO!  STOP THAT!”  “IT’S NOT ALLOWED!”  Practice saying NO!  assertively.
5.  Practice distinguishing secrets to keep and secrets that must be told.  Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.
6.  As sex abuse is about power, work to empower your child with independence in dressing and toileting.
7. Develop and practice problem solving skills.  Role play different situations and how your child should react in them.
8.  Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.
9.  Develop social skills.  Personal space.  Eye to eye contact.  Make sure your child knows their phone number and address.
10.  Often children with special have already developed a passivity to adults, especially to caregivers and other professionals.  Teach your child it is okay to stand up for themselves.
11.   With non-verbal children consult a speech therapist for communication symbols for sexuality.

These aren’t my ideas.  They are from another Mama who is working with Dr. Freda Briggs, a renown abuse prevention expert on strategies to keep our kids safe from predators."

I certainly plan to add several of these to my own running education of Elise.  I hope you will too.

31 for 21: Voices of Awareness

I have a challenge for you that will take all of two minutes, over the entirety of a year.  Seriously.

This blog has had 366 posts (not all mine).  This blog has 106 followers and 308 people like it and follow it on Facebook...It has had thousands of individual views.  There has been a grand total of 608 comments on it.  That means in 3.5 years, in average, each person has commented less than twice.  Sure there have been more on the Facebook page, but not enough to skew the numbers much...

I started writing this blog to help folks know and understand better what actually goes on in our life.  Personally, and as a family, coping with an older child with special needs.  I had honestly hoped that there would be more questions asked of us, more dialogue, more discussion.  I had hoped that there would be more camaraderie amongst us folks with the special kids.

Don't get me wrong, I don't post on the blogs I follow NEARLY enough either.  And I will be abiding by my own challenge, BUT...

This year, as a part of your new awareness, could I beg that you comment on this blog?  Only once a quarter?  I need to know if I am getting it "right".  I need to know if you want to hear what I have to say.  I need to know if you have questions that you want answered but are afraid to ask.  I need to know, most importantly of all, that my words and story have made an impact on how you view people with disabilities, and their families...  It doesn't have be deep.  It doesn't have to be huge.  Just 30 seconds, every 3 months, click, done.  Even the "Like"s on Facebook make me all giddy...

I would encourage you to do the same to other blogs you follow...and I would further encourage you to make a list of your friends dealing with *Big Stuff* and drop them a note each quarter inquiring how they are holding up or meet them for lunch...

When you are dealing with *Big Stuff* the Exhaustion often feels like the dark of a cave.  It feels palpable, damp cold, deeply alone.  The comments are whispers in the dark, the grand gestures of friends are the unexpected light, warming your way...

(photo is of Bryce Canyon courtesy Frank May)

31 for 21: Wall-E

 

As I've said before, Elise is ALL about movies...and as she is very low verbally, I am always intrigued with the ones she picks as her favorites.  I may perhaps overthink things, but I think you can always figure on deeper connections than kids can say...

Wall-E is another one of her favorites.  I have to say, it's on my short list, too. 

There is VERY little dialogue in it...I'd say better than 75% of it is based on beeps and body language.  And yet, it is rich in story.  Deeper than many.

The short version of Wall-E is this:  Wall-E is a janitorial robot that had been left on Earth after humans basically trashed it and left, planning to return when life retakes it.  Wall-E's job it to smush trash into squares and store it neatly.  He is alone.  No explanation for how he is the last one left.  My own theory, is that he allows himself to be intrigued by life, and therefore continues to live fully.  He collects trash that is interesting to him, and  sorts and stores it.  He is obsessed with a musical number from "Hello, Dolly", and has a best friend, a cockroach, whom he feeds Twinkies.

 

The ship that left Earth with the survivors sends out reconnaissance robots to look for plant life.  The reconnaissance robot that lands on Earth is a very feminine robot named EVE. Wall-E falls in love with her.  He woos her, and offers her a plant he found, she goes into sleep mode, as she found her goal, to wait for the ship to reclaim her.  He watches over her and follows her on board the ship.  And ultimately inspires the captain and ship to return to Earth to start over.

 

 

Why do I think Elise loves this movie?  I believe that it has very poignant tones of her own life.

 

 

Elise LOVES to sort.  She LOVES to watch bits of movies over and over.  She seeks relationship bonds and forms very strong connections to people.  She is unshakable, once she is committed to an idea or person.  She is enchanted with simple things.  She is inspiring with her passion for life.

 

 

Wall-E is a commonplace robot, with a monotonous life, with a tedious job, with no aspirations of grand things.  BUT he lives his life with gusto and a fullness of pleasure in the magic of day to day.  He discovers what is in the corners of life, and appreciates it.  This simple desire to enjoy and share joy with someone is the most basic of desires. 

 

 

 

I feel like we have muddied the waters a bit over the centuries...and instead of spending time building the most foundational parts of life, we look for the grandiose cloud castles, which are not only not filling, but unsubstantial and disappointing.  The fluff leaves us soft and dissatisfied, and even malcontented.

 

 

Wall-E sacrifices himself for EVE, who in turn, dives in to rescue him. 

 

 

The ultimate of achievable fairy tales, don't you think?  To love past yourself so much that you inspire?  When you jump out of your comfort zone and are willing to persevere in the monotonous, your castles will be built on a solidity that cannot be shaken.

 

 

I think Elise sees the grand in the simple, and her love of Wall-E somehow illustrates that.  And, it is her love for the plain, that beautifies the life around her and touches those in her circle. 

 

 

As Mother Teresa said:  “The greatest disease in the West today is not TB or leprosy; it is being unwanted, unloved, and uncared for. We can cure physical diseases with medicine, but the only cure for loneliness, despair, and hopelessness is love. There are many in the world who are dying for a piece of bread but there are many more dying for a little love. The poverty in the West is a different kind of poverty -- it is not only a poverty of loneliness but also of spirituality. There's a hunger for love, as there is a hunger for God.”  

 

 

This is why I feel the impact of those with disabilities can be so great, and why they achieve a somewhat undeserved status as "saints" and "angels"...They help us see what is important and filter what is real in life.  And that is why it is so imperative that we help them achieve their dreams and live their lives to their fullest, no matter what that be.

 

 

 

 

The stars are after all, touchable, when you are shooting for the heavens.

 

 

 

 



31 for 21: Speaking of Stalking

I love Gary.  I mean, LOVE her. 

She has an amazing blog about her daughter who has Down Syndrome.  Alex has brought joy and hope to me for my Elise on a "post-ly" basis...I would say daily, but sometimes I go check and see if there is a new post, and *SNIFF* there isn't one...

The Ordinary Life of an Extraordinary Girl

The blog does, happily, have its own Facebook page, on which Gary relates conversations she has with Alex that are pithy and awesome, that haven't made it to the blog for one reason or another:  https://www.facebook.com/pages/The-Ordinary-Life-of-an-Extraordinary-Girl/165047126851472

Also, she wrote a book that I have bragged on before HERE, that you can purchase HERE.

Today, I want to send you to this post in particular:
http://www.theextraordinarygirl.com/2013/08/why-college.html

This has been my favorite post in a while, because it speaks to what we ALL want for our kids, and addresses a prejudice that limits so many kids' futures, when in fact, you *can* give your child the world by opening a door to their possibilities!!

31 for 21: Adding to your reading list

This is not a book on Down Syndrome...really at all...exactly.

But it is the story of the inner workings of a child's mind, trapped behind the inability to communicate...and even the inability to frame the ideas in his own mind...

And his imaginary friend, who sees the inner workings, and explains them...

I have cried more over this book...I know that makes it a HUGE sell, right?  But it is brilliant and poignant and striking and insightful and truthful...

I literally cannot recommend it enough!!  I am thankful to "Angel The Alien" who follows and comments on this blog for recommending it on her blog...

(PSA:  I do stalk you *nicely of course*, by the way, when you comment on my blog *hint, Hint, HINT* to find out why you are here and maybe what you need/want/hope to see...I am not ego-centric, I really am writing TO you and I always genuinely love to hear from you...even when you write things I don't agree with or controversial things, it gets mixed into the cauldron of my thoughts that are always bubbling and simmering and I invite seasoning...)

http://www.amazon.com/Memoirs-Imaginary-Friend-A-Novel/dp/1250031850/ref=sr_1_1?ie=UTF8&qid=1380894303&sr=8-1&keywords=memoirs+of+an+imaginary+friend

31 for 21: Parenting Complexities...

Forgive me if today's post is a collage of links...but I see no reason to reinvent the wheel...I am more than happy to nod to others' moments of brilliance and the richness of their stories...It's not because I have nothing to say, as much as it is a demonstration of something, so stay with me:

I actually started this blog to offer yet another perspective on parenting that, at the time, I felt was somewhat unique.  And the truth is, parenting is always a unique perspective, knit into a few key truths...

Here was my original jumping off place:
http://tiffanyselephants.blogspot.com/2010/02/truth-of-parenting.html

A friend posted this link (not hers) and asked for thoughts yesterday:
http://downsyndromeuprising.blogspot.ca/2013/07/picking-rocks.html?m=1

I feel like this is one of those posts where every single option is the "wrong one"...and yet they all have validity as the "right one", too!  As I have said (HERE and HERE) I am wrestling with the fact that at some point you have to quit over-thinking and live your life and parent as best you can...for your particular child, typical AND non.  Another friend called the Picking Rocks post a "painful read," and I would absolutely concur.  I feel that there is certainly as much, I would even  go so far as to say more, judgement in the special needs parenting arena as there is in pregnancy or "typical" parenting.  But just as in the same manner, there are 30-eleven ways to do it *right*.  The judgement comes thick and fast, stemming, from I believe, an innate just-shy-of-the-surface panic that you ARE failing your kid, because you feel every square inch of being human and being *not perfect*. 

As a parent, you have to make the parenting calls you can live with.  You have to do your homework, but your life holds a grouping of unique factors that can never fit into a blanket generic fix.  These unique factors are called PEOPLE.  The parents are people.  The children you are seeking to raise are people.  The community in which you are located are people.  The teachers and peers in your child's impact circles are people.  And as people, they all leave their own mark, have their own stories and failings, and have their own needs. 

Consider this post that a friend is wrestling with:
http://gardenofeagan.blogspot.com/2013/10/is-it-really-inclusion.html

And this heart-wrenching and yet, terribly honest and dare I say common perspective?  (In the feelings and the paths they can so very easily take)
http://www.nopointsforstyle.com/2013/10/issy-and-kelli-stapleton-murder-suicide-and-family.html/

And, while I'm at it, let's bring in the ever popular/infamous proverb:  "It takes a village to raise a child."  I'm not going to debate it, I am just going to say there is a lot more to parenting than a recipe to the perfect kid.  There are more flow charts and scaffoldings of ideas and consequences in raising a child than a library can hold.  BECAUSE THERE IS NO ONE WAY.

Parenting is a hard job.  You have your own baggage and your own hopes.  You have your child's strengths and weaknesses, abilities and inabilities.  You have hope and desperation. 

Ultimately, you have a child that you love, that you need to raise...and you have to do the best you can...and pray that it's enough for that precious life you would give yours for.

Cancer Thoughts....

In previous years, I have addressed September as Childhood Cancer Awareness Month.  I have celebrated the fact that Elise is with us, and the people we have met along the way.  I still am thankful for my Elise having beat this monster disease.  And I would like to "reshare" some of those thoughts.

http://superdownsy.blogspot.com/2012/09/childhood-cancer-awareness-repost-1.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-series-1-repost.html

http://superdownsy.blogspot.com/2012/09/cancer-free-anniversary-and-repost.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-3-repost.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-4-repost.html

I have also, in person, shared how important all the fundraising is for Childhood Cancers, because the public funding and allotments are so stingy with Childhood Cancer  research and support.  Like, shamefully disproportionate:

The American Childhood Cancer Organization says "Cancer will be funded in 2009 at a level of approximately $5.6 Billion. In 2007, the NCI reported that the combined extramural and intramural funding for childhood cancer research was approximately $180 million. However, this estimate could be regarded as liberal as some of the associated research might not be perceived as directly benefiting childhood cancer. Other more conservative estimates, put childhood cancer research funding as low as $30 million annually."  And other research groups that focus on Childhood Cancer, estimate very similar numbers.

The bare bones Childhood Cancer statistics are here:
http://www.acco.org/information/aboutchildhoodcancer/childhoodcancerstatistics.aspx

and here:
http://www.theatlantic.com/health/archive/2013/01/our-disproportionate-focus-on-adult-over-pediatric-cancer-research/266684/

For me, I look back at the kids that I know personally that have been lost.
Hayley
Maddy
Annette
Jack
Catie
Will
Lana Beth
Daniel
Amanda
Madison
Jill

And the hard thing for me and, most especially, their parents, is: "If research had gotten decent funding, could they have had the One Thing that would have helped them beat it?"

As many people before me have said, people in the position to allocate funds answer to adults, not kids.  So you know how "awareness" helps?  Now you know to ask.  Now you know to do all the fundraising 5ks.  Now you can donate time, money, or toys.  Now you know that we need you.

Please research any group you choose to give to.  Make sure that they are transparent in the allocation of funds.  Make sure you hold them to accountability.

Personally, we were touched by Cure Childhood Cancer, here in Atlanta.  I know for a fact, that they were heavily financially involved in supporting one Elise's doctors' research.  I know that they are funding research in long-term effects of chemo and cancer treatment drugs and protocols at the group that has handled all of Elise's treatments and follow up medical involvement.  I am sure that they were also involved with the experimental treatment that Elise received and that now is the new treatment protocol for all kids with Down Syndrome who are diagnosed with AML here in Atlanta.

Cure Childhood Cancer, also provided Thursday Night Meals for families undergoing inpatient treatment.  We looked forward to each Thursday as a break from hospital food.  More than that, though, it was an emotional release from the oppression of the sameness, and they gave the knowledge that there was someone out there that cared and hadn't forgotten us...or gotten tired of our emotionally draining updates.

I have been impressed with their transparency and their commitment:
http://www.curechildhoodcancer.org/about-cure/

But the thing you need to know, is that even if a child fights and wins, it never really goes away.

Elise not only had to battle cancer, but she is dealing with increased mental impairment because of the very chemo that saved her life.  We know this, because nobody dodges this.  The most common side effect of any chemo that I have seen is the inability to organize and process thoughts like before, in varying degrees.  And in the face of every single IEP at school and every story of children with Down Syndrome who are successful and perform on par with typical peers, I wonder again how much Cancer took from her.  Because of the damage the chemo did to her body while killing the cancer cells, she also lost a year's worth of interventional therapy.  In all areas, Physical, Occupational, and Speech, because she was too tired to grow and progress.  And we are still seeing the loss.

Why families who have lost kids fight passionately, most people understand.  They miss their child, and want to honor their baby's memory to help other kids NOT lose.  The ever popular "F U Cancer" indicates just how unending the battle is. 

Those who have battled and made it?  We fight because we lost kids who we "playdated" in the halls during treatment.  We fight because we feel guilty to have won, with nothing more to recommend us than anybody else.  We fight because we know how brutal the path is.  We fight because we fight the long-term effects every single day.  We fight the heart damage, the mental impairment, the systems failures, the lung damage, the liver damage, the secondary cancers, and the chronic fear.

We fight, because it is never over.

Post IEP Bipolar Disorder.

Post IEP Bipolar Disorder.  It's not real.  But it could be.  Even confident parents who get their kids all the things they need.  After IEPs that are good and easy, ask those parents when they come out how the feel...And after bad ones...well...it's just not as much of a surprise...

They are happy, positive, and hopeful.  And emotionally spent.  And verging on depression.  And even non-criers, find themselves on the verge of a soggy breakdown.

All at the same time.

 

 

Elise's IEP was really good today.  I led out with my two biggest concerns.

 

We now have on the books, a tentative plan in regards to her physically maturing and dealing with menstruation issues...thankfully, we are not anywhere near there, but better to have a plan, than be completely blindsided whenever it comes.  As of right now, the plan is to bail from school, until she is accustomed to expectations...and then we will revisit.

 

I also requested to hold her back next year.  She is thriving and growing and learning, and the elementary school offers her more typical opportunities at this time.  At my request, the facilitator/assistant principal, therapists, and teacher all started giggling and revealed that they too, were going to suggest that at today's meeting.  For the same reasons.  I was pleased to have such a confirmation to my convictions, and to have no opposition.

 

They responded with her achievements, her progress, and her maturity.  She has added sight words, she has improved in handwriting, she has improved in math.  She is attending a typical science class, 4 times a week.  In this class she is surrounded at all sides, with typical peers.  She keeps her hands to herself, she attends to the instructions, and participates in every experiment.  She has friends.  She loves to cut up, and defends her besties with a fervor that rivals a mama bear's instincts.  She can write her name in an intelligible manner that anyone could read, complete with an age appropriate colored bubble dot over her "i".  She can copy sentences with a competence, that most people could decipher subject matter if pressed.

 

She is making huge progress with speech, as I have bragged on before.  She is learning to use different key words as alternatives, when people do not comprehend.  She is making strides to become clearer.  She is learning that words have more value in stories than she even thought.  Her stuttering comes and goes.

 

The kicker that I (re)learned today, was that age eleven is typically when kids start losing therapy services when they neither progress, nor regress.  That she has made minimal progress, I am not shocked.  I live with her and stuff.  That we have reached a plateau, that it is highly likely will not change significantly, even into adulthood, is a blow.   

 

Remember back when I asked "When do you accept that this is where you are?"  This might be it on the physical front.

 

She is still progressing cognitively, she is still progressing in speech and communication.  But there is so little progress, and has been so little for so long in gross and fine motor, we shouldn't count on having too much more...

 

She may not ever be able to tie her shoes, button her shirt or pants, or snap snaps.  Even socks present a worthy challenge.  Her handwriting is unlikely to improve significantly.  She will always struggle with balance and agility.  She will struggle with many physical traits that will hamper her significantly.

 

Not that I won't continue to access therapy until they say "No".  A surprise benefit to holding her back is that, since she will stay in elementary school, she will also benefit from continued therapy services.  It is a guarantee that she will, at a minimum, lose half to 3/4 of her current OT and PT upon progression to middle school.  

 

Not that Little Miss Resourceful won't find ways around the *typical* way to do things.

 

 

But it is time that I start accepting that we have officially lost the wide open door of possibility.

 

 

 

It is time that I start looking only at her strengths and realize that if this is as good as it gets, it isn't "settling".  She is still an awesome girl and she is meeting her potential.  And that's not only okay, it's a good life, maybe even a great one; even if she won't have the life I had hoped for at her infancy.  She is certainly still cognitively expanding, and so that door isn't closing at the same rate...thankfully...  But, I cannot lie to myself, and say that things are going along at a bang up rate.

 

She is an amazing cookie that has an amazingly positive impact on everyone in her life.  She will continue to grow and make an impact.  I fully anticipate that she will pick the lock on the door of her life and make some spectacular splashes, but she might need more help than originally thought.  But really, wouldn't you want to hang with a smile like this for as long as possible?

 

However, I will be shopping for stretchy pants with no snaps and super fantastic shoes with velcro, for her as she takes over the world from her SECRET LAB OF POWER...Because there is nothing slowing that brain of hers down yet...just her fingers.

 

 

 

10 Things That Are Good

As promised, I do have some gumdrops and lollipops...Here are 10 Things That Are Good...

1)  Elise made her second fashion request in almost 11 years.  Twinkle Toes.  (In case you are curious, her first was little fuzzy "ugg" boots.)  I know you are probably wondering why this is a good thing?  Well, first, it shows a personal style preference, indicating that she knows her own mind.  Second, well, she had to put forth a request, and make it understood.  And "hingk hoes" is a little obscure for breakfast conversation...but she totally pulled it off.  (In a related PSA:  putting Twinkle Toes on your kid in the semi dark could easily initiate a seizure.  I felt well beyond weird the other morning, kind of space travel disoriented, but with a little gag-y eye pressure thrown in...)

2) Elise, while making rotten choices with Amelia, is keeping her hands to herself at school this year.  In previous years, it's more 2 no-touch-days in a school week...and this usually doesn't happen for at least 2 weeks into school year.  This year, she is more like 2 touching-days in 2 weeks...and it started with the start of school.  This is amazing.

 

3)  She is not wiping food on friends at school, and only occasionally on her sisters.  HUGE leap forward.

 

4)  She is writing more letters independently and drawing pictures with significantly less coercion. 

 

5)  When she is "writing" letters to people, she is addressing them with people's names...and the first letter is correct, 80% of the time!!  Also her "E"s only have 3 horizontal lines over 60% of the time, unlike her previous "if 3 is good, 9 would be brilliant" rational.

 

6)  She is attempting to communicate whole ideas, experiences, and desires.  I grant you, her speech is garbled at best, and it is still very elementary, but she is striking out past 2 word phrases.  I would like to credit her speech therapists with using her interests in speech therapy instead of sticking to "speech therapy protocol" and thinking outside Dolch words.  Pam and Kathleen, y'all ROCK!!

 

7)  I have started having my girls pick out clothes the night before and put them on the floor laid out like people.  She know what she needs to make a "school person", even if she cannot lay it out smoothly...AND she sticks to the decision in the morning.  BOTH huge leaps!!!

 

8)  She mostly takes her meds without spitting them out.  I say mostly, because there are still some rather sticky days, but she is getting waaaay better!!

 

9)  She is all about negotiations.  Now.  This is driving me bat crazy right now...but it is seriously high level thinking.  She is always arguing with me, that "Daddy say 'YES'!"  (Usually I also get the full body attitude wiggle with it!)  When both of us know, that a) it isn't so and b) he was not around to be asked.  But she is ALL her daddy's girl in the world of negotiations.  She will find every loop hole in a phrase.  She will put up insane options and then back them down to ludicrous, hoping that I will fall for the bait-and-switch as proportionally reasonable. 

 

10)  She is requesting hugs and kisses.  Again, I realize this is not huge to most kids, but for Elise, she used to stand and grunt with her hands out.  Now she demands "Kiss me, please!"  and "Need hug, please!"  And I always comply, even as she invades my personal space and I can't cook for her standing one millimeter outside of my skin.  Because, really, who couldn't use more love?