31 for 21: How Do You Like Them Bapples?!?!?!

 

Today is an exercise in rejoicing.  You probably won't get why this is a BIG FREAKING DEAL, but it absolutely is.

Last night the stars aligned, and meatloaf with extra ketchup was held hostage.  ELISE ATE APPLES!!  Granted it was like 2 eighth of an apple pieces, but STILL!!!  This is a culmination of EIGHT YEARS of Occupational and Speech therapies!!!!  This is a coup in proportions of Hannibal and the Elephants!!  Joshua and Jericho!!  MIRACULOUS, Y'all!!!!

With SPD, textures can cause a child to gag, choke, and generally freak out.  Apples have been on Elise's black list for...How old is she now?  She will sometimes eat cooked apples.  She will eat applesauce.  She will lick and occasionally taste them for Johnny Appleseed projects in school.  But she has never once willingly eaten an apple.  Last night, I wanted to try again...for the 33rd zillionth time...and so I attempted to eliminate as many factors as possible.  I cut it up.  I took off the skin.  She keened and groaned and growled.  I told her that she could have more meatloaf (her favorite) if she ate the apples.  She licked, shivered with disgust and scratched off some into a little bit of apple pulp on her finger which she licked off...she turned to me after it was clear that she HAD to try one.  "Cut?"  She wanted me to cut it into littler pieces.  I felt like I was making apples for dollhouse people by this point, but, sure...whatever.

AND SHE ATE THEM.  ALL!!


WOOOOOHOOOOOOOOOOOOOOO!!!!

Plus, isn't she cute??  Filthy, perhaps, but cute...  She notices that I am recording her about halfway and poses to smile, because she thinks I am taking a picture...  Plus, notice, her princess finger positioning!  *Sigh*

Rejoice with me!!!!  "How do you like them apples???????"

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: Hug Them Tight

I was completely MIA this weekend.  I am sorry.  I'll explain why in the course of this post...

Once upon a time...I was a lost lamb...I didn't know how to make friends...I serendipitously stumbled onto them and then held them tightly...I have mentioned before that I am an Aspie...as such relationships have always been a bit tricky...I have always and forever sought the "Unwritten Friendship Laws," you know, if you behave in this manner, then you will earn a friendship that will be the stuff of legends and classics...  I could count on a hand the number of Friends I have had at any given time...until recently...

Recently, I have found a cache of people that are on the fringes...some who are lightly antisocial; some who have children with a disability; some who are so hurt and damaged by life, that they are too fragile for a mainstream social life; and some who have simply discovered the ability to socialize and make friends via internet mediums, socializing without the pain of actual face-to-face interaction...  Here in my late 30's I have more friends than I have ever had in my life...I have the social life that most people have in their college years... 

I have asked myself why this boom in the last 10 years?

Coincidentally, the same time frame that I have had Elise...

I think much of it, I can credit to her.

Since having Elise, I pursued people that are a few steps ahead of me in life, searching for concrete suggestions on how to support Elise best.  I have had TONS of therapists and medical professionals pour into my otherwise quiet life.  I have super analyzed each and every emotion that has passed through my mind with intensity, to see what I needed to "fix" to be a better mother, to explain how I felt and what people needed to know to be better friends to Elise and myself, and how I could be a better friend to new parents.  I have completely deconstructed every social interaction with everyone to be able to figure out what social cues Elise is missing and how I can help her decode them properly.  And how to respond to people appropriately.

That said, before I broke down my life to minutia, I had very few people I counted as friends and I was hyper-appreciative of them...one of whom I had lost close contact with, due to massive life changes in both of our lives.  Happily, along with the childhood friends that saved me from being completely adrift, Facebook restored him to me again.

I explain this all to you, so you understand the magnitude of even my past friendships...

On Saturday, I saw a vaguely worded post suggesting tragedy, that brought fear to my heart...after some brief Facebook Sherlocking, I confirmed my deepest fears...

My friend lost his son.

His son was 4, when we were close friends, a golden child with chocolate eyes that was one of those ebullient, bigger than life kids...he was bewitching.  He no longer lives in this world.  We are the worse without souls like that.  I have no idea who he became over the last 17 years.  But personalities like that, enrich your life, whether you are in a smooth sailing patch or a bumpy one....

As a mother, any knowledge of a lost child, will turn you into a quivering crazy.  Knowing that child will break your heart.  Knowing the child and loving the parents will drive pain into your very soul.

I didn't write this weekend, to save you all from "Our Town"-like declarations...

"Does anyone ever realize life while they live it...every, every minute?"

Elise has been restored to us, in miraculous ways, 4 times.  I don't know why.  She won't save the world with her brilliance as an adult.  But each and every time, I realized afresh, how fragile our lives are.  With every restoration, I questioned "Why my kid?"  Why not a kid with limitless potential?  I still question it.  I question it again today...

We are in a easy patch with Elise, or as easy as it can been in tween years...no medical complications...Nowadays, I am fighting for the day to day paths for her...some people may think that is not worth the time and energy that we make it out to be...but trust me, the day to day is the prize...the monotony the treasure.

So, be thankful that your kids are making you crazy and that you are yelling at them to do their homework.  Be thankful that they are rolling their eyes at you.  Be thankful that you are considering applying thumbscrews to your kid to pick up their laundry.  Be thankful that they are still demanding you to tuck them in to bed.  Be thankful that you can pet their hair.  Be thankful for the drive-by hug as you are in the sink to your elbows.  Because not everyone who wakes up this morning will have that privilege tonight.


“We can only be said to be alive in those moments when our hearts are conscious of our treasures.” 
~Thornton Wilder

Go hug your kids.  Right now.  Have a post 9-11 week.  Make memories.  Appreciate them for their strengths.  Tell them you love them.

Be sure you can say like my friend poignantly wrote:
"I am so glad my children and I always, always hug and say I love [you] when we part, and that, that was how we parted Friday when [he] left work."

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: Thumbs

This is one video that Elise will never have to watch.  It is innate.  I don't know how she knows, but she has a wider base than any kid I know.

She is exceedingly defensive.  She has never willingly let us wash her in the bath.  She has never willingly let a doctor examine her.  She may or may not come willingly from a store.  And if she doesn't want you to, it will take all of your 37 years worth of strength and skills to get her to do it.

If you don't have 50 lbs on her and she locks down, you are not going to be able to physically manipulate her.

This goes back to the good old days when she was on chemo and STEROIDS when she was a whopping 18 pounds. 

Back then the nurse practitioner wanted her to take Tums.  For calcium.  Let me remind you exactly how many medicines she was on.  A BUNCH.  Most were liquid.  They all involved me sitting on her to administer or giving them to her by her main line port.  And they were all important to her survival, except the Tums.

When I would attempt to give it to her, she would buck and scream.  And so I did what any good mother would do, I smashed it into a powder and hid it in her food.  And she started boycotting food, just in case it was where I hid the Tums.  NOW.  At 2 years old and 18 pounds, this is not safe or reasonable option.  The nurse practitioner got upset at me because I told them I wasn't going to push the issue.  The floor nurses saw me sitting on her while she screamed and gargled and bucked and spit and bit, and backed me up.  The exact words from the nurse practitioner were "She's not that big.  I don't see why her mother doesn't just make her take it."  One of my favorite nurses, told me that she told her "Then you make her, I've seen it.  You aren't going to win."  But rather than listen to actual people who dealt with Elise, she kept prescribing it.  So, I started taking the daily Tums to shut her up.  I probably needed them prophylactically for anxiety anyhow...

Why do I tell you this story?  To drive home a point.  She doesn't do "backing down". 

She has bowed up several times lately and refused to go to bed or leave the library or leave CVS.  This involves her running or fighting my hold on her wrist.

I think she has broken my thumb.  I have had increasing soreness daily.  But interestingly, on Monday, I picked up a bag and slid it from my palm to my shoulder and it almost dropped me like a Vulcan Nerve Pinch.

I broke my thumb sledding when I was in college, and it feels remarkably the same.  I am of two minds about going to the doctor...it's my right hand...and I need it very much.  And braced, it will do me almost no good.  On the other hand (ha ha, pun intended!), if I don't get it to heal, it's not going to be doing me any good anyway...

In similar news, my long term back pain has escalated to spasms, and I am going to my general practitioner.  BUT so I don't look like a drug seeker, I got Elise's pediatrician to write me a note, validating my situation. 

Do you hear the irony here?  I have to have a doctor's note to go to the doctor. 

My life is so weird.

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)