Willow Speaks

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

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

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

Here's the newly cool part.

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

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

And she never stutters as Willow's voice.

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

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

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

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

How We Get Early Intervention Wrong

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

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

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

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

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

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

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

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

Do it.

Summertime and the Living Ain't So Easy

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

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

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

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

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

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

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

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

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

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

How you fit in your pants.

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

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

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

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

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

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

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

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

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

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

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

(please excuse the "dressing room" mess!)

Can I get a whoop, whoop??

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

The Value of Stories

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

It can frustrating and funny.

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

Happy Easter! 

 

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

 



 

Easier than Discrimination

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

They don't, however, protect against mean.

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

However...

You can make things too hard to be included.

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

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

Here's the thing.

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

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

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

That's a hard place to be.

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

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

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

But there will be battles.

Beach Bunny

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

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

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

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

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

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

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

 

 

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