Spinning Round

I've lost count how many times I have watched this today.  Merry Christmas.  Happy Summer Solstice.  You know, either one, whatever.

I suppose I should be thankful that we are not watching this 2 minute clip over and over:

 

Elise loves movies.  They are her drug of choice to control agitation.  She particularly loves holiday specific or never-in-real-life stuff.  I have concluded that Netflix must be run by either someone ON the Spectrum or someone who has a child on the Spectrum.  Because whatever else is put on or taken off, it's never the holiday movies.  Never, Ever, Ever, Ever.  I know because Gingy's Spookey Story has not once left our Instant Queue since November 1, 2011.  And yes, I don't miss the irony that we saw it for the first time AFTER the holiday was over.

 

Sometimes we get to watch the whole movie. 

 

Sometimes we watch 3-10 minute clips on constant recycle.

 

I guess, in general, I am glad that this self-soothing device is somewhat publicly acceptable.  But I would seriously love longer clips, or even a WHOLE movie...I comfort myself that they will get longer as she gets older. 

 

I leave you with my BFF Forever, Gingy's Spooky Story: The Bride of Gingy".  And for those of you that are Elise's friends, this is "Red Lips".

 



What a Lady Needs

Let's play: "What Is In Elise's Purse?"

Elise has been carrying a purse with her everywhere lately.  It's been clutched up under her arm for a week.

I have been dying of curiousity to see what she feels is so desperately important.  Yesterday, she left it in my suburban unattended for the first time.  I brought it in last night to see what was in it.

 

 

So, my dear girl needs 2 wallets (one full of coins), one sweater slipper, a snack bag, a plastic camera, a pair of sunglasses, Wet Wipes, a hackysack, a picture her sister colored for her, a doll's cape, a sugar packet, a Rio bookmark, a Perry the Platypus eraser, a plastic top, a golden medal, a play thermometer, a measuring tape, and a newspaper.

 

It appears that she is partially prepared for almost anything life should ask of her.

 

 

I died laughing.

 



Comfort

This is one of those posts that write themselves...and I have A LOT of links today...but please take the time to read them!

In my head it started out in my personal blog.  More a philosophical post than anything else...and it morphed with a conversation I had with my best friend while she was over here this week...and then it wrapped itself into a few news articles that I've seen lately, and culminated into one giant chunk...which is interesting in and of itself...and only underscores the idea as a whole.

One thing led to another with my best friend and we got to discussing Elise and the reactions that her kids have to her.  Which then led to the reactions adult people have to her, and how they influence how their children see her.  Which led to parents that refuse to acknowledge there are differences in their own children and fail to support their own child's needs in the pretension that they are perfect and nothing is wrong.  I have hit on almost all of these subjects over the last couple of years in this blog...so I'll save those for another day...

But this morning, that conversation came back to me when I saw the Facebook status of a college friend of mine...who is now a youth minister:

"I fear we are becoming a people who give up too easily...a people who fear hard things...a people accustomed to comfort. This is weighing on my soul tonight."

I responded carelessly:  "That extrapolates to all areas of life: spirituality, health, morality, disabilities, and success!"

And then I started really thinking...
We don't want a real religion that controls our decisions, because then we have to abide by it.
We don't want a real relationship with Christ, because it will be hard if we don't act on his words, because then he will be sad for us.
We don't want to be healthy, because then we have to eat healthfully, cook from scratch and plan ahead.  We would have to question what scientists and politicians are doing to our food.
We don't want to exercise because it will make us hot and hurt.
We don't want to think of new ways to do business, because we won't enter the workforce with a secure salary. 
We don't want to go out on our own because we will have to build up our current business again from square one, so we mumble under our breath and dread going to work.
We don't want to do the right thing when faced with moral issues, because we might be judged by others or forced to question others' decisions.
We don't want to have a child with disabilities, because it will be more work, and we may never have an empty nest...and they may place more responsibilities on our other children.


That final thought goes back to one of my all time favorite links of how disability is "natural." 

Which brings us to these two articles:

I read this one about a class picture in which a child in a wheelchair was completely separated from his class in a school picture in the Huffington Post:
http://www.huffingtonpost.com/2013/06/17/miles-ambridge-wheelchair-class-photo_n_3454857.html

My first reaction was:
I am a parent with a child with special needs. And a former teacher. I have significant sympathy to the situation. I can see how it happened, and am glad they are planning to retake it. Do I think the teacher should have been more aware and said something? Yes. Do I think it is worthy of a media stink? No. Does it completely anger me that this has made it to the media, but the fact that this nation chronically allows teachers to abuse children with special needs to remain in their classrooms after documented abuse and nothing is said?   Absolutely.

Then I read this blog post.  Apparently the only other option is to remove all indication that the child is "not normal"?
http://davehingsburger.blogspot.com/2013/06/loathing-difference.html?spref=fb

And that sat even more badly with me.

And I have fumed over it for hours.  Why do we refuse to acknowledge that life is hard?  Why do we refuse to invite those with differences into our lives?  Why do we separate ourselves under the premise that it is easier for "Them" to be with "Those Like Them"???  It is the age old:  The disability/illness/so-on is catching? 

Are we afraid that it will ruin our lives?

Even though there is EVIDENCE that is simply not the case???
http://www.brianskotko.com/blog/22-news/96-lets-get-real-about-down-syndrome

How is it that no one chooses to see this as this generation's Segregation?? 

Even under circumstances that shriek for justice, like the death of Ethan Saylor, the disability is blamed for everything:  http://www.huffingtonpost.com/2013/03/26/robert-ethan-saylor_n_2958777.html
And the system turns a blind eye to the tragedy, even in the face of unanswered questions:  http://your4state.com/fulltext?nxd_id=306392

I feel like we are isolating ourselves from peace and contentment.  Politically, spiritually, and relationally.  Even churches have challenges about stuff getting in the way of peace:
http://www.aholyexperience.com/2013/06/a-letter-to-the-north-american-church-because-it-is-time/

Churches are having whole sermon series focusing on challenges about bad church experiences:
http://www.brownsbridge.org/messages/my-bad-church-experience

We are even having to PAY people to listen to our problems, instead of opening up our hearts to friends for prayer, advice, support, or even just sympathetic tears...

I looked on YouTube for the shrink clip in Crocodile Dundee, and couldn't find it.  You'll have to watch it for yourself, in the meantime here's my favorite quote on "mates":

Sue Charlton: People go to a psychiatrist to talk about their problems. She just needed to unload them. You know, bring them out in the open.
Michael J. "Crocodile" Dundee: Hasn't she got any mates?
Sue Charlton: You're right. I guess we could all use more mates. I suppose you don't have any shrinks at Walkabout Creek.
Michael J. "Crocodile" Dundee: No back there if you got a problem you tell Wally. And he tells everyone in town, brings it out in the open, no more problem.

We are trying to make everything safe work, philosophy, church, friendships.  We are trying to pad and protect our lives from sadness and catastrophe.  And yet, those that step away from the safety net are the ones that find the most fulfillment.

"If we have no peace, it is because we have forgotten that we belong to each other."
and
"I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love."
~ Mother Teresa

Kindle-ing the Flame

We are still working on the "talk box"...the learning curve is steeper than I anticipated...

The funny thing is that it happened just as I suspected.  We ordered the Accent about 1 month before a verbal boom.  You know, when ALL the speech therapy of the last 4 years fell into place and she started talking like a house afire.  Well...for her...

I was not in love with the speech therapist from the 2 school years previous to this one.  I mean, I didn't hate her, and Elise liked her, and she did her job.  But she really pushed sight words and school and reading, with led to a sight words boom. But this focus also led to debilitating stuttering and a complete stall in social words.  Such that last summer I engaged a speech therapist outside the school system, for the exclusive goal of eating and socializing.  She was lovely and near by, but she was also scheduled quite full and we were worked in once a week.  So, when the therapy center than Elise gets hippo therapy (horse occupational therapy) engaged an extra speech therapist, I was in. 

Also, at the beginning of the school year, we were thrilled to discover that her new speech therapist at school was one of our very favorites from back in "Babies Can't Wait" days (Early Intervention, pre 3 years program).  And Elise has loved having her again.

Between Kathleen and Pam, Elise speech has completely exploded thanks to support and the brilliance of these ladies.  They are the kind of speech therapists that talk to the kids, ask about their likes, and then they utilize the snot out of those interests...I love them.  Even if their last names make me giggle like a tweeny-bopper...because they are like textbook words on HARD TO SAY.  Which, is ironic for a speech therapist, if you ask me...

Although Pam and Kathleen have been beyond amazing, and Elise has really started to sound clearer, she still is low on the speech realm.  And the talk box would be really excellent for chatting with those that don't know her...but Elise has gotten all pompous because people are understanding more...especially her conversation starters...and so she doesn't want to use the box, because she doesn't need it for the conversation starters...and so she is not practicing the beginning stuff, and wants it for the harder stuff, but because she doesn't use it for the beginning stuff, the more advanced stuff is almost impossible to find, which makes her frustrated, which makes her not want to use the box...and the circle continues.  I should have gone over the school's head years ago.

My intervention has gone to "school time" in the mornings.  Where we read and color and write.  And now practice our talk box.  Hopefully, this will get better.

"School Time" was inadvertently invented, because Elise was sad that she couldn't go to school and was taking that frustration out on her sisters.  So, now we are somewhat scheduling our day, so expectations protect us from meltdowns.  If you know me, you know I don't love that...but, it's better than the alternative...so....

The funny out-growth of this new speech boom is that Elise has now become Vanna White to sell me on the apps she wants to buy. 

Elise got a Kindle for a conglomerate (all gift cash going toward one item!) birthday present last year.  And then I put it in a super safe place.  And it's still there.  And I can't find it.  And it's still there, with my iPod...yay.  So, for for this last Christmas conglomerate, she got a new Kindle.  I figured that would make the safe one turn up immediately..unfortunately, not this time.

ANYWAY, the Kindle has the unfortunate banner at the bottom of the screen of "other customers who bought this app, also bought..."  And Elise spends massive amounts of her days trying to talk me into new apps.  AND SHE NEVER FLIPPING GIVES UP.  She has persistence in SPADES, People.  And this is in the face of the rest of my kids, uh, none of them are exactly mellow push-overs.

(* If you really want to make me happy, please feel free to call Amazon Kindle's Customer service at (206) 922-0866  and beg them to take that banner off.  They listened to all the begging and installed Parental Controls which were not originally on the Kindles.  So, they really do listen!!)

I will say, for the record, that the Kindle is massively sturdy, and has some amazingly great apps, free and for sale...I love it.  Now, if it had been able to download some of the really great speech device apps, we would never have come to the Accent debacle...I really wish that the companies making the special needs apps would acknowledge that the Kindle is a much more reasonable option, and make them in Android versions, too.

But until such a time as the banner is removed, Elise is all about using her new speech to tell me all the lovely things about the apps she wants, telling me what all you can do in it, what different characters can be chosen, and why she totally NEEDS it. 

Which is why she has about 6 cooking apps, 3 hair cutting apps, and 5 coloring apps.  They were free.  I succumb to the duplicate apps, not because I really feel like she needs them, but because I am sooooo proud of the vocal sell...and that deserves a little reward.  The only one I regret was a shark app that didn't look terribly violent, but it has unfortunate sound effects.  SO!  But, if it takes wanting an app to really jumpstart the verbal confidence, so be it.