Autism Multiplied

The art of raising quadruplets: 2 with ASD, 2 without

Halloween

This was the first year all 4 of my kids actually went trick-or-treating fairly successfully.  Peanut only fell on her face twice (she’s infamous for not lifting her feet up when she walks, so that’s pretty good).  Eguy only invaded people’s personal space occasionally.  JB led the charge (this is his 2nd successful year), not wanting to stop despite his utter exhaustion by the end.  LT was hesitant at first (last year he had to stay home for most of it) but when we told him he could check out everyone’s “cool doors” he launched himself eagerly out of the wagon to trick-or-treat with the group.  He is obsessed with doors, if you recall.

We have done a theme every year.  Sometime at the end of September I get the kids into the theme by buying them a little action figure of their characters and a book about them.  They are always super excited by the time Halloween comes around.  Since the ASD diagnoses, the twins have only worn “sweatshirt” like costumes due to sensory issues, so that always adds to the challenge.  This year JB was actually able to wear a more standard costume.  Baby steps, people! 🙂

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Toy Story … a big hit, especially Mr. Potato Head (if you’re already brainstorming for 2016).


 

And just because quadruplets in costume are so much fun ….

2014: Star Wars

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In retrospect, providing light sabers to 4 year old quadruplets wasn’t my smartest plan

 


 

2013: Mario Brothers


2012: Super heroes

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Eguy hating his costume until he loved it because toddlers.


 

2011: Wizard of Oz

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4 little pumpkins, before they could escape these photo ops!

4 little pumpkins, before they could escape these photo ops!


 

2010: Two pumpkins and two skeletons

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Yeah, we kinda phoned the first year in … I may have slept walked through that month.

Themed suggestions involving 1 girl, 3 boys (2 of whom need fairly uncomplicated costumes due to sensory issues) for 2016 are greatly appreciated although I think I’ve exhausted the ones meeting those criteria.  Also, if they start to care about what they want to be, I will stop the themes because I’m not mean. 🙂

Escapism

I know I haven’t written in a while.  Three months, if anyone is actually counting.  I think there are two basic reasons for this.  The most obvious one is that it always falls to the bottom of the priority list simply because my blog isn’t a living, breathing thing vocally demanding my attention (unlike 4 little someones, ahem).  The next is that I always feel like it needs to be the “perfect” post.  This is inherently silly, but I feel as if I want it to be just right.  I tend toward an OCD-level of perfectionism but it can ultimately be self-defeating when I’m too paralyzed to actually do something for fear of it not being perfect.  Today is me attempting to set the latter reason aside and just write.

When I was young I was an avid sci-fi/fantasy reader.  Yes, I’m a huge nerd.  I have accepted this (despite some difficult junior high years …).  In fact, I’ve really embraced it since I discovered this graph:

Image source

But I digress.  My point is simply that as a child, well after I was supposed to be asleep, I’d immerse myself in imaginary worlds by nightlight, wrapped up in the endless possibilities outside of my own reality.  Really well-written fantasy books (think Tolkien, C.S. Lewis, Marion Zimmer Bradley) caused a magical, shivery, almost deliciously painful aching longing to well up within me.  The best passage I’ve ever seen to describe this feeling is from C.S. Lewis himself:

None of the children knew who Aslan was any more than you do; but the moment the Beaver had spoken these words everyone felt quite different. Perhaps it has sometimes happened to you in a dream that someone says something which you don’t understand but in the dream it feels as if it had some enormous meaning–either a terrifying one which turns the whole dream into a nightmare or else a lovely meaning too lovely to put into words, which makes the dream so beautiful that you remember it all your life and are always wishing you could get into that dream again. It was like that now. At the name of Aslan each one of the children felt something jump in its inside. Edmund felt a sensation of mysterious horror. Peter felt suddenly brave and adventurous. Susan felt as if some delicious smell or some delightful strain of music had just floated by her. And Lucy got the feeling you have when you wake up in the morning and realize that it is the beginning of the holidays or the beginning of Summer.”
C.S. Lewis, The Lion, the Witch, and the Wardrobe

I think anyone who has felt this feeling will understand completely.  It makes you believe in something bigger than yourself.  For me, ultimately that’s God, and I love how C.S. Lewis weaves that into his books, allowing for other worlds and peoples.  For others it may be something else entirely.  But the feeling remains.

Then I came to an abrupt stop in my fantasy novel reading.  It was around when I started college, when the time in the day became more of an ever-present hourglass because there was so much to do. do. do.  There were brief stutters and starts of re-immersing myself along the way, but I also found myself frustrated by selecting a bunch of poorly written books.  It turned out that I must not like all fantasy novels, but I couldn’t put my finger on what sub-genre I was obsessing over.  I am still not sure, although I found this article helpful.

So I gave up.

My reading turned clinical (autism literature in all its forms) or to dense tomes of non-fiction, often complete with equations or thousands of footnotes.  I find this all very interesting, especially having worked as a scientist and having a graduate degree in Biology, but I wasn’t getting that feeling.  I minored in English in an attempt to grasp at that fleeting feeling, for crying out loud … and I basically gave up the pursuit of it for a good ten years.

My husband’s uncle passed away almost a year ago, and his children distributed many of his belongings amongst the family.  He had a gorgeous bookshelf in his living room that always took my breath away, and we are now its owners.  It is heavy and regal, with whimsical features like sculpted feet and tiny tabs to hold the glass paneled doors in place.  My husband’s uncle had thousands of books, and this particular bookshelf screamed out to be filled with novels.  I haven’t filled it entirely yet, but I like to think I’m accruing a collection to do it justice.

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The other day I slid two of those delicate tabs aside and silently opened one of the doors.  Without thinking I picked up A Wrinkle in Time by Madeleine L’Engle.  A young adult fantasy novel.  A quick, easy read.  And just like that I escaped.

“It seemed to travel with her, to sweep her aloft in the power of song, so that she was moving in glory among the stars, and for a moment she, too, felt that the words Darkness and Light had no meaning, and only this melody was real.”
Madeleine L’Engle, A Wrinkle in Time

If I can’t have that feeling, even briefly, that thrill of the thinning of the veil between here and whatever is beyond, I am not fully alive.  Let me not forget ever again.

Identity

I think motherhood is awesome, don’t get me wrong.  That being said, moms runs the risk of losing themselves in the day to day tasks of raising a family.  If you’re mothering quadruplets, preemies, or kids with special needs the risk is probably higher.  If you’re raising all of those, then you just might be in trouble.

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We all slept well after this outing

A large part of my identity, of course, is being a mom of multiples, a mom of preemies, a mom to kids with ASD.  But not all of it.

This post is a placeholder to let you know that I’ll be posting about all the other identities I tend to claim (I’ll let you decide how true they are).

 

If I squint in the mirror just right, I also fancy myself a …
1) minimalist (with QUADRUPLETS?? Go ahead and laugh, it’s an oxymoron, I know).

2) gardener

3) real food/green enthusiast

4) Zen Catholic monk meditating on a mountain (duh)

5) wine connoisseur (hey, I might be getting there based off the wine required to survive around here) and

6) travel buff

… among other things.

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Rialto Beach at sunset (Washington State)

And you know what?  Even though I don’t come close to being any of those things fully, each one adds real value and happiness to my daily life.  It changes boring tasks like shopping and cleaning into something purposeful.  It infuses life with meaning.  I have found that assigning time and value to these facets of myself has kept me sane through the years.

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Lost Coast, California

 

Olympic National Park

Olympic National Park

 

 

 

 

What do you fancy yourself?  If you’re not sure, do yourself a favor and give it some consideration!  It’s also pretty fun. 🙂

Dysgraphia

The IU and School District have outrageously bad timing.  Their ability to casually float bad news right before a weekend is almost laughable.  Last week we got the news that LT and JB’s entire ABA team (company, BSC, and therapists) would be replaced right when the holiday weekend was about to kickoff.  Just as this weekend started (ie. Friday afternoon), I was emailed the Evaluation Report for my neurotypical son (Eguy) from the school district.

Now, Eguy has had an IEP since birth.  He certainly has delays.  From age 0-5 yrs old a child can qualify for services under the category of “developmental delay.”  Early Intervention (age 0-3) and the Intermediate Unit (age 3-5 or 6) will provide services under this category.  When your child transitions to the school district (age 5-6 up through age 21) the “developmental delay” category vanishes.  If you want to receive services through the district, your child must have a primary disability.  Examples of this include: Autism, ADHD, Dyslexia, Cerebral Palsy, etc.

Where we live, when a child turns 5 you can choose to either a) opt for one extra year through the IU, or b) transition to kindergarten with the school district.  During this period it is recommended that you go through the evaluation/IEP process with both the IU and the school district, compare what each is offering and then choose whether or not to take the extra year at the IU or transition.

(Why yes, that does mean I’ve gone through double IEPs this year … actually, I’ve had 7 IEPs, not counting these random emergency ones, since mid-March).

I pretty much figured that Eguy would not get services offered to him through the school district because I did not think he had a disability.  I knew he still had delays (SLP, OT) but without a disability category we would be on our own to seek attention for those things via our medical insurance.

So there I am casually scrolling through his school district IEP, finding everything pretty much as expected.  I get to the bottom and do a double take:

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sorry, what??

I pause.  I re-read it.  Specific Learning Disability?  Okay, I clearly missed something.  Back up a couple of pages, scrutinizing the results.  And there it is under the poor OT scores.

dysgraphia1My son has dysgraphia.  I vaguely recognize the term.  I look it up.  Apparently there are three types of dysgraphia: 1) dyslexic, 2) motor, and 3) spatial.  He is young, so it’s hard to say, but I don’t think it’s the first kind simply because he is already reading pretty well for his age.

I found some books to check out on Amazon.  I’ll probably be reading these first, unless someone else has a better suggestion:

The Dysgraphia Sourcebook

Dysgraphia: Your Essential Guide

At dinner that night The Other Half and I were talking about how this blow hardly even strikes us.  We’re inundated with so much more that part of me feels like I’ve only been slightly cuffed across the jaw rather than getting a knockout punch.  And, interestingly, it makes a lot of sense.  As I said in my Cast of Characters page, Eguy “runs at the sight of a crayon,” and it really is true.  He and JB started getting 4 sessions per week of OT around the same time and JB progressed rapidly to the point of most of his scores now coming up average.  He barely qualified for OT at the IU at his meeting last week.  Eguy has not progressed nearly as much.  And there are things about his hand position in fine motor tasks, his struggle with coordination of his fingers, his clear frustration and avoidance of fine motor tasks that make the diagnosis of dysgraphia click in my mind.

But it’s still another thing.  Another struggle.  Another unknown.

 

This is Truxi

I want to apologize to anyone who has read my “Cast of Characters” tab.  I have neglected to mention a vital member of our family.  Allow me to introduce him now:

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Please note the stop sign. FORESHADOWING!

You guys, this is Truxi.  To be fair (thanks to relentless searching and purchasing at questionable prices on Amazon and ebay), so are these:

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I have paid up to $25 for one when desperate

Truxi joined our family quietly and without fanfare around the summer of 2012.  So I guess this is like his 3rd birthday.  In honor of that, I scoured iPhoto to find the first evidence of him in our household.  Here he is being ignored by JB and Eguy, poor thing:

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By December of 2012 it becomes difficult to find a photo of LT without Truxi.  He became (and remains) his constant companion.

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How did I not notice this AMAZING hotel transport vehicle til now?!

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Commence intense studying

The following pictures should prove my point. Yes, I kindly circled Truxi in red for you because I have nothing else to do with my life.  Do me a favor and click to enlarge for the full effect so I can feel better about the time I wasted this afternoon.

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Looking back, his intense attachment to this vehicle was a red flag for the ASD diagnosis to come.  Oh, we knew something was up but had our fingers crossed it was “just” Sensory Processing Disorder (nothing to make light of, please don’t misunderstand me). LT and JB were already getting services through Early Intervention due to their prematurity (SI, SLP, PT, OT) but we added 10 hours each per week of ABA about a month before these photos began.  Truxi was also receiving 10 hours per week of ABA free of charge.

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Truxi is named for a line in one of LT’s favorite books.  The Little Blue Truck saves the city from a horrible traffic jam by telling all the cars to play nice.  They all agree and the book goes on to explain that “Trucks and buses got in line with vans and taxis and it all went fine.”  LT’s mispronounced version went as follows: “Truxibuses got in line …” which somehow got shortened to “Truxi” and the rest is history.  In case you are writing a Truxi biography like me.

Losing Truxi is basically the worst thing that can ever happen in this house.  The only thing I can compare it to is the month LT decided to use his fingernail to compulsively scratch off Truxi’s stop sign then have a total meltdown demanding the return of said stop sign.  Totally reasonable.  I spent every single day that month with a bottle of red nail polish, white craft paint, and a teeny tiny paint brush tediously re-creating the stop sign and then wrapping a piece of packing tape around it. Because refer back to Truxi costs on eBay mentioned above.

Not too shabby, thank you very much!

I honestly can’t remember how he got off that obsession.  I think I blocked the rest out.

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He is overflowing with gratitude

Truxi now comes with some ground rules.  He acts mainly as a transition object.  LT may bring him in the car to school but must place him in the cup holder upon arrival.  Truxi is retrieved at pick-up and studied en route to social skills before being replaced in the cup holder and so on and so forth.  Truxi may come into unfamiliar locations as a comfort object and he also comes to nap and bed.  I think that pretty much covers it.  We have a good system down for keeping track of him — most likely because if we forget and we’re not at home we have plenty of time to hear (at an ear-piercing decibel) about our transgression.

The day after his third birthday, LT drew his first Truxi of thousands to come, each increasingly more elaborate.

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Just wait til I show you the 3D versions

And I’m pretty sure we have Truxi to thank for LT’s subsequent love affair with stop signs.  But that’s a post for another day.

Coffee and war

Good morning.  At exactly 8:30AM JB’s annual IEP begins.  It should run til noon and then the emergency IEP meeting for the ABA drama starts.

IMG_2807No one should have to be reading one of these with her coffee.  Especially when it’s 86 pages long.  To be fair, I did read it last night, and I’m just reviewing. There’s nothing quite like sitting down to a table of at least 7 professionals and (versus?) you.  Best to have your ducks in a row.  It’s shaping up to be a fine Tuesday, my friends.  Battle time!

Two [calls] diverged in a wood

and I, I picked up the one that made me angrier — and that has made all the difference.

RING RING RING.  Cell phone.  Check number.  It’s the Intermediate Unit (ie. special education).  Stomach drops. “Hello?”

“Hi this is G, from the IU, calling to talk about how YOUR BSC QUIT AND SCREWED YOU OVER AND NOW BOTH YOUR BOYS ARE GETTING A WHOLE NEW TEAM OF THERAPISTS BECAUSE WE HATE YOU.”  Okay, so the italicized part is semi-embellished.  Translate it into indifferent, robotic reporting of the same information.

No sooner are those words out of her mouth then …

RING RING RING. House phone.  Check number.  It’s Behavioral Health Services.  Brain intrigued.  Tell robotic-bearer-of-bad-news-IU-lady to hold. “Hello?”

“Hi this is S, from BHS.  Spots have opened up in our Tues/Thurs social skills class!”

[yay!]

“Of course you will need to get all 3 boys in for separate psych evals right away, can you do that?”

[Stare at ridiculously full calendar, remember infuriating call on hold.] Tell BHS I need to call them back.  Return attention to the IU.  Give her a piece of my mind and make demands for immediate meetings.  Advocate and lawyer phone numbers creep to the front of my mind.

I have an annual IEP meeting tomorrow that requires more prep.  Now we’re tacking on an emergency IEP meeting to the back of that one to discuss the WHOLE NEW TEAM ridiculousness.

I check the clock.  It’s only 10AM. I scrub my kitchen.  I remind myself to breathe.  Then I write this — the first of many blog posts.  Because after ages of silence, I am back.  And it feels good.

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