Trouble Shooting Puberty

This particular post will be a little vague to protect Elise from embarrassment in the future, but I felt like the general specifics needed to be shared due to some surprised exclamations I received lately when spontaneously discussing it naturally with other parents of kids with varying disabilities.

Puberty is a giant war against crazy.  Seriously.  Add incomprehension and sensory issues in the pot and PTSD is unavoidable.  Truly, and NOT being disrespectful to veterans.

My personality default is to trouble shoot.  To the detriment of friendships at times...and to the redemption of relationships sometimes...go figure.  Parenting is a humongous exercise in trouble shooting and sometimes getting it right and sometimes getting it wrong, and a WHOLE lot of prayer.

Puberty was weird enough my first go round, with a typical son.  When faced with my darkest fear, a GIRL...well...I did what I always do...I made lists in my head of how I would handle things.  Then revamped them...over and over and over...ad nauseam.

When it became clear that Elise was going to go into it with a lowered mental age, limited communication, and raging sensory issues, I decided that I was going to handle it with as little stress as possible.  To do that, I decided that nothing could start as a time duress situation.  I was going to have to ease into everything slowly and WAAAAAAAY early, so I didn't happen into any surprises without wiggle room.

So, when she got all flippy dippy about her leg hairs in her leggings a couple of years ago, I started shaving her legs about once a week to week and a half, with a Schick Intuition.  No risk to cut herself, no shaving cream sensory gags (which I tried about 3 weeks ago, and she fell completely apart), and no pressure.  It was all on her terms.  Now that it is obvious when she needs to, its already an established routine and it's not a big deal to up the frequency a bit.

I handled the bra transition the same way.  I started letting her wear my exercise bras and the super stretchy sleep bras for fun.  Then I had her wear them to school once or twice a week, and then everyday.  And, again, now that it is no longer negotiable for modesty, she loves them and they are an established routine.

Deodorant, even.  I offered it to her when she was watching me get ready a few times, and she giggled and gagged.  Then I started asking her to put it on after a bath about once a week.  We are up to every bath, now, and she rarely needs it...but it is already established, with a scent that she loves, and we are poised, ready as soon as it becomes a daily non-negotiable.

Elise will be 13 at the end of this month and the most stereotypical aspect of puberty is looming, her period.  I mentioned how thankful I was for Willow being in heat for taking away the panic at its discovery last year. It will be any time now, so I have also been very proactive in trouble shooting for that rather huge adjustment.  I have fully anticipated that she will not handle it well, so I wrote into her IEP last year that when she starts, she will stay home that week.  My stance on that is "I don't hate anyone enough to make them deal with that." 

I have been trying to figure out how I was going to mediate that week for about a year.  Pads are dodgey and hot and bunchy for a person with typical sensory thresholds...and trying to face that with someone who loses her mind at seams in her socks and still gags watching anyone put on chapstick...well,it is daunting at best.  So, I have been trying to sort my way around that for quite some time.  I decided one day at the grocery that Poise incontinence unders would be a stellar option.  Nothing independently problematic.  TA-DA.  Except that they are hot and big.  Oh, well.  And then I got a advertisement in my Facebook feed thanks to my natural food "Like"s for THINX underwear.  But as lovely an idea as they are, they don't make the kind of unders Elise prefers AND they cost a FORTUNE.  And a few months later, I accidentally bumped into cloth menstrual pads.  They can be made in any length, shape, or fabric.  I messaged a very lovely lady on Etsy with ALL of my questions.  And not only did Denelle answer them, she sent a couple of pads for Elise to try and use to decide on her favorite fabrics.  Elise LOVES them, unlike the disposable one I made her try as well...which she gagged and retched and whined about.  And so, I have a nice little stash of pads that she wears around the house periodically...and which she brags about to her sisters who are now desperately jealous.  I can confidently say that we got all the transition of technical crazy out of the way, and we can deal with the normal, hormonal crazy head on.  While you may not be as comfortable as me, since I opted to cloth diaper my two youngest...I just share this because I know that most people don't realize there are other options out there...And I know how loathe I was to realize that I wasn't going to get out of this transition, and so I needed to act in a manner that would make it all easier on all of us.

If you have any questions on any of this, as usual, feel free to message me or email me, and I will answer anything that I can.

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 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!!

Puppy Power

Okay.  It's for real now.

We are stepping up for a dog for Elise.  We have decided on a Therapy Dog personality, teenager dog, and training him into a pal.  Her sisters and myself are looking forward to having a fluffy someone to take the constant loving and petting she wishes to bestow.

I have found the most marvelous breeder, who is listening and really hearing what we need to make this work.  She even read this blog in an effort to find the perfect match.  We are looking at 2 dogs.  One is a miniature poodle, and one is a 2nd generation Pomapoo.  I just put down the holding fee for the boy that I think will be the best fit.  I hope to meet both boys this week to confirm my gut feelings.  I am hesitant and on the fence about bringing Elise, because any kind of squirrely meetings tend to make her worry.  And it took 2 sessions for her to get comfortable with the dog at her therapy center, and I don't see her being an immediate bonder with any puppy...especially if she is not at home or somewhere she is not comfortable.  But I will see how she is feeling the day of, and if she is doing well, she will be the only one who will come so as to not overwhelm the puppies (or Elise).

His tag name is Smoke, but the breeder tries to use only nicknames and endearments, so they can be named officially at adoption. 

Elise is thinking about names....so far she is wavering between Shrek, Stitch, Bear, Bolt, and Waffle.

If I am wrong about personality, we may have Cole, instead.

All things going smoothly, and by that I mean, WEATHER ALLOWING, I will have one or the other of them by this weekend.

In the meantime we weather more snow...and by that I mean ICE.

Please pray over a smooth transition, and the perfect match!

Sensory Overloading and Feet

Once upon a time, Elise was working out.  Which right now involves one of two things:  "walking" our dog around on a lead in the Invisibly Fenced yard and jumping on the mini trampoline.

 

Well, the day called for jumping.  She desperately needed the proprioceptive input and so she jumped happily and willingly like a mad woman.  I was sitting on the couch next to her, because she liked the audience.

 

Well, this time she slipped a little, and got her foot entangled in the springs.  Shrieking like a banshee, she tugged on her leg to free her foot.  I lept up and dislodged her immediately.  Total time on this was less than a minute.

 

She asked for snuggles and kisses.  And she was healed and went on with her day.

 

The next day was also, perfectly fine.

 

The day after that, she complained that her foot hurt.

 

The day after that, she refused to bear weight or go up the stairs.

 

They day after that I took her to the pediatrician.

 

Who sent us to urgent care for an x-ray.

 

They sent us to an Orthopaedic Specialist.

 

Who sent us home with a boot because she had a BROKEN FOOT.  (broken metatarsal)



 



This caused a lion's share of distress.  She hates shoes.  She hates feeling "unsafe".  She hates not feeling "grounded".

This made the boot a test of her emotional and sensory fortitude.

The boot caused a HUMONGOUS amount of sensory overload.  She sucked a callous onto her thumb.  She pet anyone who sat near her.  She refused to move quickly.  She was an emotional basket case.  But, she showed a gigantic leap in maturity, as she realized that things could get worse if she fought the boot.

But she buckled down and suffered for 3.5 VERY LONG weeks.  Then we got iced in.  And she wore boots in the snow...until she got cold and then she ensconced herself on the sofa.

At the end of week 4, she was released from the boot at the follow up.

This was such a wonderful and joyful celebration, I didn't even remember that it was the anniversary of her open heart surgery.

I find it fitting that she was freed from her bodily limitations at both junctures...and on the same day...

And she is free to run again.  And so she has!!

TMI and Shaving

Elise is 11.  We are entering the lovely world of adolescence.  Which includes attitude fluxes, emotional breakdowns, and body changes.

Lately, her sensory issues are taking a forefront.  Interestingly, one of her more debilitating issues has become her leg hair.  Like laying in the floor weeping over "HURT! LEGS!!"  It took me a little while to figure out that her leg hair is getting coarser, and is bothering her with her legging jeans.  Ladies, you totally know what I am talking about, right?

So, think about a gal who gags at the sight of lotion, retches with it's application, hates baths and hair-washing, and jerks around and screams over her hair being brushed.  Then add a razor.  It's enough to cause an eye twitch just thinking about....

First off, unless things get desperate, Nair is remarkably like lotion in texture.  And so it's at the end of my list, even though there is no razor involved.  Also, Elise's skin is hyper sensitive and dry, and I am really quite concerned how it would react to the chemicals in Nair.

Which leaves razors, electric shavers, and getting it zapped off.  I plan on trying a few of these, and I will let you know how each compares in her response and effectiveness.  On my short list is the Schick Intuition, an electric razor, and the NO NO.  I know someone who is planning to purchase the NO NO, so I plan to beg and plead for a trial run.

I put this concern up in a few forums for advice, and I got steered to several options, one of which I was leaning toward anyway.

So, I've been looking low grade for the Schick Intuition on sale...and was planning on looking for a coupon, when I found it on crazy sale at Kroger for $5.99 this week.  They are usually around $10.  So I snapped it up.

There are a few reasons I was tending toward this razor. 
1)  They have a big soapy thing around the razor head that goops up your legs a little, so you don't need a separate soap or shaving cream.
2)  Because of the big soapy thing, the razor head isn't quite as close a shave, so would reduce the nicking factor.
3)  The razor head itself has little wires wrapping the blades to prevent nicks.  And even if you slide it sideways, it keeps your flesh from getting caught in the blades.

4)  It has 4 blades! Even though it has all these anti-nick factors, it does have 4 blades, so you get bonus blade passes in one pass of the razor.
5)  Also, the big soapy thing has moisturizors in it, so lotion after would be less necessary.

Friday was such a day from hell thanks to Elise's reapplication for the Katie Beckett Deeming Waiver, so I figured, why not just round it out...

So I ran a bath, and endured Elise's usual protestations.  And did the warning counting to get her in.  And let her play with her birthday party plastic dolphins, whales, and sharks for a while.

And tried not to think about the Jaws theme song, which of course once I thought about, couldn't stop.

And then I talked up how she was getting so big, and talked about her leg hairs hurting her, and told her we were going to get them off so her jeans didn't hurt.

Then I played show-and-tell about the razor and told her what I was going to do with it.

Then I had her sit sideways in the tub and put her foot up on the tub wall.  Prayed.  And made one pass with the razor.

And, praise GOD!!  She didn't completely wig out.

She got kinda squirrely, and had to touch her leg after, and swish it in the tub.  And we took probably 50 strokes of the razor per leg, when it could have taken 15.  And it was a little of each leg at a time....and back and forth....BUT, we finally got them done.  It took me way longer to talk her into letting me take a swipe at her armpits.  But I finally got one on each.  This apparently tickled and she giggled and it took me even longer to talk her into the other side...but it finally happened.

At this point I had a crick in my neck and back that was going to black me out, I'm not sure from the stress of the situation or awkwardness of shaving someone else or the length of time involved...and I was more thrilled to be done than even Elise.  She even volunteered to take a swipe at the very end.  I figured we shouldn't mess with success for a little bit.  And I told her she could have a turn another time.

So I am pleased to report, in the face of a sensorily spazzy day, she was able to handle it.  It will take a significant amount of patience and require more time than usually expected, but we have a working option.  I don't plan to do it again, until her leg hairs bother her again...I anticipate about once a week or so.

I have to admit this was a gigantic worry, and having this much success the first time, was a huge answer to prayer...and yes, I was totally praying over shaving my daughter's legs.

When I signed up to be a parent, I didn't anticipate this being in the job description...but it isn't as bad as I feared...I hope that some of my other stresses that are already causing panic prove to be as resasonably fixable...

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???????"

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.

funny/sad

Since I threw some gasoline and a match out there...I figured I'd share a sad/funny puke story.  You know, because I haven't provided many giggles lately.

I did not know what Emetophobia was until lately.  In case you don't either, it is an extreme fear/anxiety of vomiting.  As I hold my toddler who is whimpering and breathing like she's run a marathon, and after 3 days of the same with Elise, I figure this is worthy of a post.

I know nobody particularly loves to throw up, but there is a difference between that, and someone who is ter.ri.fied. of it.  And both of my sensory kids are that way.  Elise screams and tries to run "from" it.  If she holds a bucket, or hangs over a toilet, she seems to think it is inevitable...where if she's getting away from it, maybe she can fake it out.  It hasn't worked for her yet...not with this virus, not with chemo, not with any of it...ever.  And yet, she always tries.

(There has been a lot of unnecessary cleaning due to this habit.)

During and immediately after, she tries to burrow into your pocket...sometimes it feels like your very soul...

Charlotte is somewhat the same.  She is petrified of puking.  BUT she will man up at the last second and do her penance in an Easter basket.  A cute one.  With frogs.

However, she also cannot be touched during or immediately after. 

Elise has felt very sorry indeed for Charlotte.  And has tried to hug and pet her when Charlotte begins to scream with fear as the nausea rolls up...Which initiates the evil witch spitting and toddler-cursing and she scrabbles away from the very tight hugs.

It is a truly tragic cycle.

Enjoy the Fireworks

Okay.  You need to read these.

http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

http://theunknowncontributor.blogspot.com/2013/02/compliance-and-special-needs.html



Elise is is a firecracker.  She is not an easy child by any stretch of the imagination.  And the primary difficulty is not even the Down Syndrome most of the time.  Her two biggest challenges do not even include the mental deficits that she operates under.  Her two biggest challenges, for me, are the lack of verbal communication and her sensory issues.  I can put on her pants and her shoes and brush her teeth for the next 20 years and it won't be nearly as emotionally exhausting as not being able to understand her feelings or her flipping out because she doesn't like how her boots feel when she is wearing a certain pair of socks.  And if you add those two together, sensory triggers and not being able to talk about them, it is a recipe for an eye twitch.


This time 2 years ago, we had been pushed to the limits with her impulsivity.  Although we have absolutely known that she has ADHD since she was a tiny thing, it had really started interfering with learning and we finally had to do medication...we had already exhausted all natural and behavioral routes.   We had a terrible time finding a med that worked and didn't take her inherent "Elise-ness".  I am ALL about her being calm enough to learn and not hit friends, but I can't take away her fire...even if it made my day easier.  She was a shell of a person.  A empty husk of her very SELF on several meds.  She would sit there with a vacant look in her eyes.  She wasn't jumping from subject to activity in 4 seconds flat, and she certainly was more compliant, but she was sad and emotionally vacant, too.  And that's just not okay.  We have found a medication that works for us.  It really doesn't fix her issues.  And that's okay with us.  It just barely takes the edge off...it buys her 30 seconds of thinking, and gives her the option to decide against an impulse...sometimes...but it's enough for now.

It is funny that I am seeing these posts now.  I am again facing fatigue with her abrupt decisions, and the temptation was pricking me, "Wouldn't it be easier," it said, "if I didn't have to fight her all morning, every morning...??"  Especially as her little sister seems to be following in her sensory footsteps??  I toyed with going back to her neurologist, and asking if we could try stuff...again...and had quashed that temptation, just last week...and then these posts went up, and I am encouraged that I made the abominably exhausting, yet RIGHT decision...

So, thank you, my fellow bloggers for sharing!  And those who think I should try something else?  Sorry.  That's just too bad.  Enjoy the show.  For my Firecracker is as she should be.

Why I Never Know

Yep.  It happened again.  Elise ripped her tooth out by the roots.  And we had no idea it was loose.  We learned that it was loose because she comes racing in to where we were, holding it in her hand covered with blood.

HOW does this happen you may ask? 

Well.  This time it was because she's been complaining that her "Toof HUT"
("tooth hurt"), pointing at the top of her mouth.  For the last 3 or 4 days.  Funny thing is...it was on the bottom!!!!

Sensory kids don't really have good spacial referencing.  I have found this to be true.  ESPECIALLY involving her mouth.

And so, to quote the Girl of the Moment?  "Da Toof Faiwy is comin' toNIGHT!!"

Hope she has some cash!  :)

Esther's Examples ~ The Birth of an Idea

I've been sewing like a mad woman over the last few weeks...Spring Break slowed me down considerably...but it was worth it!

About 4 weeks ago my brain hit on an idea that has taken on a life of it's own.  I've had such an explosion of ideas in connection with the original, I'm barely sleeping...

Esther is the little girlie in the middle in the pretty fairy hair.  She was my first doll that I've made since I was about 14 or 15.  She is the star of my new project here on the blog.

Elise has hit another sticky patch.  She is having a lot of behavior problems again, due in the most part to Sensory Issues and Communication Issues.  I am trying desperately mediate...to give her a voice and base that can help her.

There is an idea out there in the special needs community that pictures can stand in for words, in preparing a child for experiences, helping them find "words" that others can understand, in allowing them to express themselves without having to "explain" themselves...it takes many formal forms, usually in a very simplistic form: stick figures, quick drawings, generic black and white prints. 

Elise likes pretty things.  (Don't we all?)  She already utilizes dolls as "Activity Support" in that she uses them as a few extra votes for things that she wants to do against her siblings and me.  And it occurred to me that I could use them as "votes" in the activities I wanted to see her attempt, do, and avoid.

I was going to do it for Elise and myself.  I was going to get a "Little Elise" doll that I was going to utilize for us, privately.  Then I realized with a shock, that it may not be just my child.  And thought maybe, I'd try for a book...and then thought that if I needed it yesterday, then maybe others might, too.  And I decided to make an attempt at a good, old-fashioned serial.  I am going to aim for once a week...but definitely every 2 weeks.  And I am going to make picture stories of some behaviors that we need to make a point with Elise....and these lovely dollies are going to be my helpers.

My "Special" dollies have the rainbow fairy hair.  My "Typical" dollies have standard hair colors.  There is a Mommy and the other adult is going to play the part of teacher, doctor, therapist, and random needed adult.  There may be new friends added as needed.  But this is where we start.

Since I hope to one day put together a book of my serials, I needed the stars to be original.  They are my own patterns, made exclusively by me, on brown paper bags.  Their clothes will be as well.  I am still working out the brass tacks of their "set" of their adventures and activities.  But I am sure that I will have to wrestle those needs out myself, too, to achieve the goal of being copyright independent.  (Keep in mind, My Lovelies, this brainstorm is protected by intellectual copyright laws!)
This project has been named "Esther's Examples".  Esther will be exhibiting our goals with her friends. 

Esther was not randomly named.  I wanted to have an "E" name, because Elise is hyper aware when names start with the same letter as her own.  I needed her to identify with the star.  I wanted the doll to have a unique name she was unlikely to run into at school.  And Esther is my very favorite Bible story.  Despite the fact that God is unnamed in the entire book of the Bible, you can see his influence in the entire story. 

Also, in this project I am hoping to mediate many of my fears and worries for my child.  It smacks of  one of my favorite quotes from The Patriot, "Stay the course."  Which is what I feel like I am doing most of the time.  One foot, in front of the other...doing the best I can, inch by inch.  Mediating.  Mediating.  Mediating.  And beautifully enough, the symbol of the the quote in the movie, was a star necklace.  Star.  Which is what Esther means.  Could it be anymore meant to be??

I believe that my next post will be show-casing each doll.  And then, "Washing Hands" will be my first serial.  A sink is giving me fits, but I think I've finally got it worked out in my head...now to make it!

And so...Stay Tuned.  And pray for this project?  Please?  I think it could be really good.

Thankful That We Are Not Alone : Penny's Take on a New Therapy

Penny is a new friend as well. A treasure discovered in the wide, wide world of Facebook. She has an adorable munchkin, Wyatt, with Downs and some sensory stuff, who stars alongside his brothers in her blog, Penny's Peeps. 

She offered this spectacular follow up about Therapeutic Listening. I have not ever heard of this before, but let me tell you, after this post I will be looking into it for Elise!! Can I get a HOORAH for new weapons in the sensory arsenal???  :)

 a major component of wyatt's sensory therapy has been "THERAPEUTIC LISTENING."  "Therapeutic Listening" is defined as "an auditory intervention that uses the organized sound patterns inherent in music to impact all levels of the nervous system.  Trained therapists learn to use modulated CDs to set up programs for clients in homes, schools and clinics."  (Vital Links)  

many experts believe that the auditory system is a critical link in sensory integration (which is the ability to organize sensory input from the body and the envirnment and to incorporate it adaptively in meaningful occupations).  the vestibular and cochlear systems function similarly with "hair-like receptors moving in a fluid filled canal" as one system.  "therapeutic listening" provides direct input to this system through various musical styles, types of filtering, and level of complexity!  the music is actually "electronically altered to elicit the orienting response which sets up the body for sustained attention and active listening."  (Vital Links)

so how does this all work?  wyatt wears specially designed and "weighted" headphones to listen to cd's for varying lengths of time.  the process involves building up the time spent listening. he had worked up to 30 minutes on the first cd before switching to the second cd in the series this week.  his therapist sits with him, usually on one of their therapeutic swings, gently swinging back and forth.  this gives additional vestibular input as he listens.   this week he also crawled around and played while listening. 

and what outcomes might be anticipated from this therapy?  "Therapeutic Listening coupled with SI (sensory integration) tends to speed the emergence of:

• attention
• organized behavior
• self regulation
•  postural control
• bilateral coordination
•  praxis
• fine motor control
• oral motor/articulation
• social skills
• communication
• visual motor integration"   (Vital Links)

what have we seen with wyatt?  we have seen a HUGE improvement in his ability to focus on tasks in therapy!   we have also seen improvement in his social skills (not hitting his friends as much).  his postural control is better, he is showing improvement in both gross motor and fine motor skills, and he is jabbering away with varying inflections ALL.THE.TIME now!  these are just a few of the changes we have seen! 

"Therapeutic Listening" was created and developed by occupational therapist sheila m. frick, who also founded vitals links.  her organization provides the materials used as well as training in the system to clinicians.  another component of therapeutic listening is the "astronaut training program: a sound activated vestibular-visual protocol."  although wyatt's therapists have invested in this program, they decided that he is too young for the movements that the program involves.  but if you have an older child, you might look into this program as well! 

www.pennyspeeps.blogspot.com

Thankful That We Are Not Alone: Anna's Education

I believe Anna found me on Facebook...and I have never been so pleasantly surprised to be friended by a stranger.  She isn't really a stranger...on quite a few levels, I am pretty sure she is just me, 7 years ago...seriously...so very many times, I have read one of her blog posts, on The Chronicles of Ellie Bellie Bear that makes me shake my head, and go..."Yep, Elise." 


That said, when she asked if she could put in a post on Sensory Processing Disorder, I couldn't say "yes" fast enough...because it will make sense of a lot of things that Miss Elise does...and it saves me the trouble of reinventing the wheel!  Because Anna says it beautifully!

On September 16, 2009, my husband and I received the surprise diagnosis that our newborn daughter, Ellie, most likely had Down syndrome.  I had just turned 29 years-old, which was the same age as my grandmother when she gave birth my aunt Peggy.  Aunt Peg also has trisomy 21.  Like most parents, we went through the grieving process because we knew our Ellie would have to face so many challenges in her life.   Because of Aunt Peggy and my experiences as a health care provider, I knew that my daughter would walk, talk, and be a contributing member to society, but that these milestones would come later and with the assistance of various therapies.

Fast forward to a few months ago.  To the day that I got sucker punched in the gut .  To the day when at a routine developmental pediatric appointment I heard the words “your daughter has Sensory Processing Disorder” [SPD].  The doctor continued to list a litany of therapies that my daughter would need.  I just corralled my hyper/climbing/furniture-moving toddler, nodded, and took the paperwork with me.  Once in the car, I sobbed and sobbed and sobbed.  You see, unlike the Ds diagnosis, I knew absolutely NOTHING about SPD.  Didn’t my little Bear have enough on her plate?  Why must life become even more difficult for her?  I took a deep breath and realized that Ellie is still the same Ellie.  Nothing was different.  A label was applied to her and that was it.  A label. She is the same spirited girl.  

A Sassy Pants Then.

A Miss Sassy Pants Now.

So what exactly is SPD?  This is where I will sound a bit more clinical so bear with me as I attempt to throw in a bit of my dazzling wit.  

See? She thinks I am funny :)

I went home and did what any mother would, but shouldn't do. . . I Googled.  I read checklist upon checklist and discovered that potentially every single human behavior can be found on this list.  Great, so we all have SPD?  I am sitting here jiggling my legs and chewing my nails (yes, a nasty habit).  Ack!  I must have SPD!  Quick, let’s slap the label on! The truth is that these behaviors are very typical, but it becomes a disorder when is affects one’s ability to complete tasks, learn, play, and/or communicate.  In other words, the sensory issues (cravings vs. avoidance) are so severe that they impact activities of daily living.

The senses in a nutshell: 

Our body has many senses such as taste, smell, touch (tactile), auditory, and visual but there are also body position in space and movement/vestibular.  All of these senses are translated by receptors in the body such skin, muscles, the tongue, etc., that in turn send signals to the brain. With SPD, these sensory pathways are not functioning properly.  

Hyposensitive Vs. Hypersensitive:  I go more in-depth here.

I am going to focus on hypo-sensitivity because that is what my daughter mostly has.  She is in a sensory craving state.  Except with baths--that is a whole other blog post that beautifully illustrates water hypersensitivity.

She knows I am talking about her.

One of the biggest issues holding Ellie back from communication and learning is oral sensory integration. These oral cravings are so intense that she seeks input from just about anything.  It maybe is a toy, clothing, a lovie, teethers, paper or a board book (she needs the fiber), a toothbrush (super clean teeth!), crayons, you-name-it and it is in her mouth.  At home, where Ellie is familiar with her toys, she is not nearly as bad with the mouthing unless she is tired or teething.  My sensory-driven little Bear-Bear is a full blown mouther to the extent that speech therapy has become rather interesting.  It also makes playdates rather entertaining.  Those rocks on the playground must be really good.  Salty.  Indigestible however.

"You mean I am not supposed to chew on this?"

My little Chunky Chicken also craves motion.  She is a mover, literally, and a shaker, literally.  I had a hard time with this diagnosis for most of these behaviors seem toddler-like.  She loves bouncing and being thrown high in the air.  Most kids love that, but the difference is Ellie could do it all day and never be bored.  She is also very clumsy with walking and not because she is a new walker.  This is more of a vestibular issue where her muscles, joints, tendons, and ligaments are not working in sink with her brain. Again, these motor cravings impact her ability to play as she flits from one toy to another and crashes objects into walls.  We have to strap the Bear down into a high chair during speech therapy.

What are we doing with Ellie right now to help her function in day-to-day life and improve learning?

It is so important to understand that these cravings will always be present.  Ellie will most likely be the kid who chews on the caps of her ballpoint pens at school or the girl chewing gum.  She will probably be the little girl who must swing the highest on the swingset and spin the fastest on a merry-go-round.  That is okay.  Our therapy goals are to help Ellie satisfy these cravings in such a way that she can form meaningful relationships, communicate effectively, play/work, and basically function in day-to-day life.  

There is a lot of trial and error involved in finding things that will help Ellie.  I will briefly touch on a couple that have worked so far and you kind find more in-depth information on my blog.

Mouthing Objects: Think Outside the Box for Oral Sensory Seeking

1. Chewelry or Chews

Chewelry

Chewelry

Straws

Ellie has “approved” objects for mouthing.  One is her blanket and the other involves various types of chewelry which is essentially food-grade tubing.  Now, for a whopping, wallet-emptying $0.26, you can purchase 1 foot of food-grade tubing at Lowes or Home Depot.  I carry ~4inch tube pieces with me every where for emergencies.  It works.  Its cheap.  It is easy to find.  It is dishwasher safe.   To implement the chews into your child's daily life (yes, there is a method to this), click on the link above or here.

Left: Book in mouth = not good Right: book replaced with chew = appropriate

Left: Book in mouth  =  not good Right: First Years Massaging Action Teether  = appropriate (and she cannot choke on it if walking round!)

2. Introducing Sensory foods are foods that are going to give intense oral input, i.e. sour, spicy, etc:

Lemons and Limes Sour fruit sticks Dried fruit banana chips were not a big hit Peppered Beef Jerky

Motor Control: Heavy Work for Sensory Integration

1. Heavy Work:  essentially, I am making Ellie push heavy objects aka baby bootcamp.  She LOVES it. For instance, we use one of those Little Tikes Shopping Carts.  My sand-filled hand weighted hand balls  (you can use canned goods or water bottles) go into the cart.  Bear is then encouraged to push this cart around the house (or in the speech therapy hallways) prior to sitting down for functional play or speech therapy.

That blue round thing is a weight.  The rest of the stuff Ellie added.

The long pink sock is weighted with rice.  It is supposed to give good sensory input when laid across her lap.  It is also good for heavy work as well.

2. The weighted backpack (Tutorial):  This is along the lines of a weighted blanket.   You can use rice or beans to fill the backpack SLOWLY building up 10% of the child's weight. Ellie wears her backpack walking from the car to speech therapy or to a doctor's office.  Anywhere where she cannot just run to and fro destroying things in the process.

3. Joint compressions: this is hard to explain and there are no pictures.  At times when Ellie needs high tactile input, she requests "squeezes".  Basically, I grab her hands and squeeze them very hard, repeatedly.  You can also do a very tight hug.  We have a "row-row-row-your boat" compression where Ellie has to pull against her own body weight.  

4. The swing:  It is impractical to expect a toddler, with or without SPD, to sit for 45 minute speech sessions.  Yes, she does get a break to push her weighted cart, but that doesn't work all the time.  Also, it is rather difficult to imitate sounds if there is a chew in her mouth.  Our therapy clinic also offers OT and PT, which means we crash in on the PT gym and borrow their swing.  While Ellie is swinging, we have her imitate sounds.

This is just the tip of the iceberg.  May more therapy sessions were recommended by Ellie's doctor, but the fact of the matter is this: there is only so much therapy one can handle.  By "one", I mean me and Ellie and our credit cards.

Thank you Tiffany for allowing me this wonderful opportunity to blog about Sensory Processing Disorder.  It is very much appreciated!  

--http://ellietheurer.blogspot.com
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