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....