Included: Walking Home to a Playdate

Joy had a classmate over for a playdate last week after school. This classmate's older sib had been a kindergarten classmate of Rose's three years ago and they're still close, so it was a double-decker playdate of younger girls and older. This was the first time in several years that the younger sib had come over to really spend significant time with Joy.

We started the playdate with all of us walking home from school together, about a 15 minute affair. On my way to school, I had grabbed a couple of little twigs of pine needles for Joy as I often do, because it's a favorite stimmy of hers. This time, as Joy's classmate came running over to us instead of heading for the bus, I realized that the pine twigs could be a great tool to invite her into a bit of Joy's world for the walk home.


So I gave one twig to Joy (who grabbed it with gusto per usual) and one to her friend. I explained to the friend that Joy loves to play with pine needles, and had her try the things that Joy likes to do -- tickle herself with the soft needles, twiddle them in her fingers, crush the needles a little bit and take a sniff of the piney aroma.

Both girls carried their pine twigs the whole walk home.

Included: J-Cat's Birthday Party

In Joy's life lately, there have been lots of neat little examples and efforts toward inclusion -- thinking about ways to integrate her life and her experiences into the lives of those around her. I was contemplating a great big long post about it, but it grew too huge. So I'm going to post a bunch of examples, in bits and pieces. That way your eyes don't cross while reading, and I get a whole bunch of posts out of it instead of just one! (Ulterior motive thus confessed.)

First up -- a birthday party last month. We are so happy when Joy gets invited to birthday parties! This one was a family party, celebrating the birthday of her young suitor and playdate friend, otherwise known as J-Cat.

The hand-designed thank-you card from J-Cat to Joy

A number of things went into making this party successful for Joy. First off, it was a family party, so there were parents floating around along with kids of various ages, meaning that not all the kids had to be involved in any one activity all at once. Then there was a meal that Joy appreciated heartily -- pizza, grapes, baby carrots, and birthday cake! all things that she loves to eat.

Most importantly, J-Cat's mom had Joy-proofed the living room area and filled it with things she's liked on our playdates: an exercise ball to bounce on, scarves and ribbons and noisy toys. Other kids could come join her there, and some did for little stretches -- Rose helped take the lead with that -- but Joy could also happily play alone while adults talked nearby. She also went outside to swing on their swingset, while other kids ran around with their games.

Birthday cheer to J-Cat, and thanks to his mama! We sure enjoyed the party.

Product Hits and Misses: Sensory Seeker Edition

As with the autism-insurance post -- it's been a while since I've done one of these!

I'm really excited about a new goodie that has come into my sensory-seeking daughter's life lately.

I posted briefly at one point about Joy's home-concocted weighted vest. Unfortunately I never posted a photo, and now it's been disassembled and discarded, alas! But I'll re-describe it, and then tell you about the newer-and-better version.

Foy Joy, a weighted vest helps give her some of the sensory input she so seems to crave. While she's wearing it, it seems to help her get to a place of being calmer and more focused. The theory would have it that the effect should last after the vest is removed, which doesn't actually seem to be the case with Joy. (If you've seen one person with sensory issues, you've seen one person with sensory issues!) Here's a page with a little more information on weighted vests.

Commercial weighted vests can get pretty expensive, and so one of Joy's occupational therapists set her up with a homemade vest based on one of those swim vests with removeable floats. Looked kind of like a pink barrel. Take all the floaties out, replace with weights, and there you go! Add as much or little weight as you need, in consultation with your OT. Weights can be bags of rice or beans or fishing weights or shot, either plastic baggies swathed in duct tape or homemade cloth beanbags. Since they're removable, you don't have to worry if the weights can be gotten wet in the wash. We even added weight with a couple of duct-taped door-hinges!

The floaty/weighted vest worked well but had some disadvantages. First, it was obviously not a standard piece of clothing (see barrel comment above), so it sets the wearer apart and people do tend to gawp or ask questions. Second, it was made of polyester-ish material, liable to snags and runs. The weights in particular tended to poke out of their pockets eventually.

Our new improved replacement is a kiddie fly-fishing vest from L.L. Bean! We have to credit Joy's kindergarten staff for introducing us to this. Price is $34.





The vest is breatheable and durable, woven cotton instead of the snaggy knit. It looks like a real garment, and comes in khaki or pale blue or pink. It has rings on the front to clip chewies on, and one in the back for a caregiver to grab. It has a clip over the zipper in front to keep the vest on. And, it has pockets all over the front for weights, plus a big flat zippered pocket for weight in the back!

We're using the weights from the old vest. It's working out really well so far. This one's a hit.

[Update: I just remembered a post from Both Hands & a Flashlight a while back, about their adventures in homemade weighted vests, that you might want to peek at as well.]

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Another hit with Joy, in general and specifically, is keys. Real keys, none of your plastic fakes, thank-you-very-much. She loves to handle them, clink them, carry them around, stim on them. Mama's ring of keys is the ultimate prize -- Mama's got to be very careful not to bring out the keys when Joy might request them and have to be told no, or great unhappiness ensues.

So, we've come up with a replacement.


These are keys from the hardware store. They're "mis-keys" -- keys that got flubbed up in the process of cutting and had to be discarded.

Different hardware stores have different policies with mis-keys. One store near here cheerfully gave us a whole handful for free. Another said sorry, but they return them to the manufacturer for some sort of refund. Yet a third tosses all their mis-keys and metal shavings into a big ol' bucket that you can dig through and choose the keys you want for twenty-five cents a pop.

The ring of keys pictured above is connected to a mega-chewelry bracelet from National Autism Resources. I'd initially bought a cheapo curly-bracelet keychain at the hardware store, but when Joy started chewing on it, the teeth marks stayed and the bracelet got deformed very quickly. The real thing is worth the extra money.

We've also recently acquired a ChewEase Clip-on Chewy Tube from National Autism Resources. The product has a plastic clip at one end, attached to a chewelry-type coil with a key-ring and a chewy-tube at the other end. Yes, I did say "key-ring." You could see how this product might work together with our keys obsession...

Just be careful to track the keys when your kiddo is carrying them about. We've lost two sets on the prairie, one because she dropped them when I wasn't looking, the other because I apparently hadn't fully joined Joy's key-ring to the ChewEase key ring and it wiggled off. I do hope that, if anybody found them, they didn't knock themselves out trying to find the poor soul who's been locked out of a non-existent home & office & car!

Autism Insurance and Mental Health Parity in Wisconsin

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
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I recently had a visitor to this site who arrived via the following Google search: "state of wisconsin no cap on autism insurance"

I think this means that it's time to address autism insurance issues again! [Updated 11/13 to add: I am a well-informed lay-person on these issues, but not in any official capacity. (Want to hire me?) My links are good, but my writing does not have official backing or vetting of any organization.]

Here's the very quick recap: Wisconsin's governor Jim Doyle signed an autism insurance requirement as part of the state budget on June 29, 2009; requiring certain insurers to cover intensive-level autism treatment to the tune of $50,000 per year (with age limits and for a total of four years), and post-intensive at $25,000 per year (no age limits).

I've been documenting this for several years along the way, and have a separate page on this site compiling my writings on the subject. Here also are some links with more information on Wisconsin's autism insurance requirement.

• The budget legislation containing the autism insurance requirement (in PDF)
  
• FAQ on Autism Insurance from the WI Department of Health Services (DHS)
  
• FAQ on Autism Insurance (in PDF) from the WI Office of the Commissioner of Insurance (OCI)
  
• WI OCI Rule on Autism Insurance (in PDF) [updated 11/13 to add: this is the final rule, that went into force October 1, 2010]

I'll do another post on how that's all going. It's been an interesting ride. Joy's experience has been relatively smooth, though not without frustrating questions along the way. Other people's experiences have been much rockier.

Now another very fine development is coming down the pike -- with the potential to be an immense help to some Wisconsin residents, but also adding an extra layer of confusion and uncertainty until the details are worked out. This new development involves the lifting of the $50,000 and $25,000 caps.

On October 3, 2008, then-president George W. Bush signed Public Law 110-343, the Paul Wellstone & Pete Domenici Mental Health Parity and Addiction Equity Act. This law is aimed at group health plans with more than 50 employees that provide mental health and substance abuse coverage as part of their benefits. The law aims to ensure that mental health financial requirements and treatment limitations are no more restrictive than what the plan specifies for medical and surgical benefits. There's a fine factsheet at Mental Health America that goes into much more detail.

The Wellstone/Domenici Act of 2008 was initially supposed to take effect Jan. 2009, but the insurance rules were not hammered out and published until Feb. 2, 2010. Here is the link to the applicable rule in the U.S. Federal Register (in PDF). On page 11 of the above-linked rule, under applicability date, it says the rules are effective for plan-years beginning on or after July 1, 2010.

Governor Doyle heralded the federal legislation and rules, and made it very clear his administration's interpretation that mental health parity applies to autism, in a March 1, 2010 press release under the headline:

Governor Doyle Announces Expanded Health Insurance Coverage will Benefit Families with Autism
New Federal Laws Will Further Help Children with Autism Access Full Treatment

[Update 11/13, paragraph & quote added] More importantly and officially, this is also the position of Wisconsin's Insurance Commissioner, as included in the final WI OCI rule on autism insurance, which went into effect this October. On page 4, the rule explicitly includes the position that federal mental health parity applies to autism in Wisconsin:

Although there is no direct federal guidance that autism spectrum disorders are subject to federal parity requirements, it is the position of the Commissioner that parity for autism services does apply to group health plans with more than 50 employees based upon preliminary review of the regulations.

We've been aware for some time that at least one of the large health plans in Wisconsin has been pro-active about lifting the caps for autism insurance coverage -- because if you don't have similar caps for surgical/medical treatment, you can't have them for mental health treatment including autism. For us, that's slated for January 1 when our plan renews.

However, we've heard that other plans are not addressing this, or have been trying to push the issue off till January 2012.

Part of this was apparently being enabled by the State of Wisconsin Department of Employee Trust Funds, the entity that administers health plans for State of Wisconsin employees. Their parameters for plans covering state employees were originally written to allow the caps to remain in place for the extra year. When JoyDad found out about this, the phone-calls and e-mails flew, buttressed by the links from the Federal Register and Doyle's press-release -- making it clear that the effective date needs to be January 2011 for state plans and that Governor Doyle's press release made it very clear that his office interprets the parity legislation to apply to autism.

It might have been coincidence (but I think not) when JoyDad got a communication from ETF saying that, after further review, their legal counsel determined that the autism benefit dollar limit would, after all, need to be lifted for state-employee plans beginning January 1, 2011. The correction has been posted, and here's the quote:

On Page 72, the Schedule of Benefits in Uniform Benefits erroneously lists dollar limits for Autism Spectrum Disorders. The bullet should be removed.

On Page 97, Item 6, Coverage of Treatment for Autism Spectrum Disorders erroneously lists dollar limits for the benefit in the second to last sentence. It should read: “Benefits are payable for intensive-level and nonintensive-level services.

Our insurance plan will be lifting the autism-coverage cap for our (state-government-employee) plan starting January 2011, as they had intended.

All the other insurance plans that compete for state employee coverage will have to do likewise. It's unclear what this may mean for their non-state-employee plans. If your health insurance plan in Wisconsin is not intending to lift the caps when your plan renews, you might want to use information and links from this post to help you advocate with them.

The upshot: Wisconsin state government employee insurance plans, and at least one forward-looking insurance company more generally, are lifting the autism coverage caps as of January 2011.

Other insurance companies are not yet on board.

Still other insurance companies are not included in Wisconsin's autism insurance mandate in the first place, nor by Wisconsin's version of mental health parity. A somewhat smaller set is not even included in the federal version of mental health parity.

And, there's been a big election here. For the past two years in Wisconsin, both houses of the legislature plus the governorship have been in the hands of the Democratic party. In the wake of the 2010 elections, all three have flipped Republican -- and quite hard-right Republican at that. I have been told that the new governor Scott Walker has some insight into, and support for, autism-related issues. I also know that the Republican party has not been supportive of insurance mandates in general. [Updated 11/13 to add the following sentence] And, the Insurance Commissioner is appointed by the governor.

Stay tuned. This story is still being written.

Meanwhile, if any of you know how mental health parity is playing out in other states regarding autism coverage, please share in the comments!

UPDATE 11/11 -- This post originally included a paragraph about 2009 WI Act 218, the Wisconsin Mental Health and Substance Abuse Parity Act, signed by Governor Jim Doyle on April 30, 2010, an act which in general strengthens the Domenici/Wellstone parity act, applying it to smaller companies than the federal legislation. However, WI Act 218 contains an exception for autism. The federal act contains no such exception, so the federal rules still apply when it comes to autism (as Governor Doyle celebrated in his press release).

Missing Teeth of Yesteryear

Should auld toothlessness be forgot, and never brought to mind?


Should auld toothlessness be forgot, and the days of auld lang syne?


JoyMama's teeth grew in crowded. She needed braces. She doesn't even want to think about what this might mean for the next generation.
We'll go one tooth at a time.

Wiggle, Wiggle

About a month ago, as we were vacationing up at the family cabins, we noticed that something looked a little different about Joy's smile. One of her two lower front teeth was just slightly displaced, poking forward just a fraction.

Her first loose tooth! At the age of 6 1/2, the time was right.

I had wondered how this was going to go. What would Joy think? Would it bother her? Would she wiggle it all day and night? Would she even notice? Would she swallow it in her sleep?

Her experience was so different than mine. I was a mega-wimp about my first loose tooth. I had an over-active imagination and was terribly afraid of pain. Those jokes that grown-ups always make, about getting out the pliers or tying a string to the tooth & doorknob, scared me silly. I ended up going far out of my way to keep that wiggly tooth from notice, wouldn't let anyone touch it, barely touched it myself. Eventually it got so loose it came out when I bit into a grape. (Update: the caption on the first picture in my Nov. 8 post, in my old photo album, says that my second one came out on the same day as the first, and I brushed it out with my toothbrush. Doesn't mention the grape. Amazing what we remember, and don't.)

Joy, on the other hand, didn't seem to notice much. I helped her wiggle it a bit from time to time, but figured that nature could take its course.

And then I saw the adult tooth pop through. Behind the baby tooth, like a shark, rather than underneath. Arggh. I immediately had visions of an extraction at a dentist appointment, complete with sedation.

So I started wiggling harder. Several times a day, I'd tell Joy "wiggle, wiggle!" and see if I could get into her mouth to loosen that tooth. It turned out to be one of those moments when sensory-seeking worked in our favor. She soon learned to echo "wiggle, wiggle" and open up for me -- and let me really wiggle it good, sometimes even bloody. More often than not, after I gave it one good wiggle, she'd reach for my hand and show me that she wanted me to do it again!

The tooth was stubborn, but it did get looser and looser. Last night, as I was giving it the big wiggle treatment, it finally popped out.

Look at the spike that thing still had on it!


And look at the big-girl grin afterwards:



We're not doing tooth-fairy. It just doesn't make sense with Joy at this point. We are doing a special homemade waffle breakfast with home-grown frozen strawberries, though. Which I'm about to go and prepare, for my big girl and her proud sister.

A Halloween to Remember

I have the good fortune to have settled within walking distance of a dear college classmate of mine -- someone I met the first week freshman year. We went on to bear girl-babies within 5 months of one another, and they too have become fast friends. Every year since Halloween 2002, including this one, Rose and her neighbor-friend Elizabeth have trick-or-treated together.

At the end of the evening on Sunday, I wound up at their house while Rose and Elizabeth sorted through and traded their obscene hauls of candy. JoyDad & Joy had called it a night earlier, but I was able to hang out for a bit and join the entertainment of looking at past years' Halloween photos on the computer.

How young we all were, back in 2002 when a one-year-old Elizabeth-lion with an orange pacifier visited a few houses with a white-bunny-rabbit Rose! In 2003 I created my first homemade kiddie-Halloween costume for Rose, discovering the versatility of solid-color sweats and sticky-back felt. (My mother never did make a homemade costume for me -- multi-talented though she was, crafty-ness was not among her many virtues). Despite the preggo-nausea that went along with gestating Joy, I managed a rather delightful ladybug outfit for Rose.


Then came Joy. For Halloween 2004, at the age of 5 months, she wore a fuzzy bumble-bee outfit that I'd snagged at a thrift shop.


I created a homemade bee costume for rose, and got a sweet, sweet photo of the two sister-bees on Elizabeth's sofa. We didn't know it at the time, but that was the only good sister-photo we'd have to look back on when we flipped through the old photos this year.

Not in 2005, when Joy wore Rose's old bunny costume and Rose went as a homemade carrot.

Not in 2006, when Rose talked me into costuming them as hula dancers like Molly in the American Girl books -- and then Halloween night was downright wintry!

Not in 2007, when they'd just been flower girls in their aunt & uncle's wedding, so we re-used the dresses, but Joy was sick that night and couldn't even go out.

Not in 2008, when Rose dressed as Lucy the Diamond Fairy and Joy was her diamond.

Not last year, when they went as black-n-white Dutch bunnies. I made them both fleece bunny-hats and taught Rose to make homemade pompoms for the tails. Joy protested the whole costuming & trick-or-treat affair that year. So disheartening, I didn't even feel like re-hashing it on the blog. We didn't get a single photo of either girl that year.

And then came Halloween 2010.

I had very strict requirements for Joy's outfit this year. Nothing on her head. Nothing dangly & stimmy. No boxes, no wings. Meanwhile, Rose decided early on that she wanted to be a pirate. Arrrr.

Here's what we wound up with: a pirate wench (boughten costume) and her hook.



Didja see that? They're standing together. Joy is smiling! We got THREE good shots of the sisterly duo, plus another shot of the whole costumed trick-or-treating crew (4 girls + 2 costumed parents). Joy cooperated happily with the whole photo shoot.

We were still a little nervous about the trick-or-treating, and had planned that carefully too in the wake of last year's debacle. Only a few next-door neighbors were on the agenda if that was all Joy could handle, and then the older girls would continue on. But Joy walked nicely, stayed upright (i.e. very little stimming in dirt & leaves), stood with Mama on the steps, squealed & jumped when the treats went into the bucket. We went all the way up and down our street with her, and probably could have gone more.

It is so nice to have a photogenic Halloween for once, amid all the school struggles and health struggles this fall.

Ahoy, onward to Thanksgiving, me hearties!