Sunday, January 14, 2018

Answers and Autism

We made it to Boston and I nervously bundled Tessie into the car, relieved that Maggie had been calm all morning long so Paul would be able to make the drive with us into the city.  

He was totally calm.  I was a bundle of nerves.

"We know what they're going to say, right?  This isn't a surprise.  We've known for a long time.  This isn't news." was his calming advice all the way there, as I chattered about being nervous, jittery and impatient now that we were so close to officially being told what I'd suspected for a very long time.  

We arrived an hour early and grabbed lunch at the bagel place near the Cognitive Neuroscience Lab and then it was time.

Tessie was not a fan of the EEG cap this time around (she is not a fan of hats in general) but after being bribed with a slew of animal cookies, bubbles, and the Curious George movie on TV she relented and sat still.

She relaxed and watched three of the videos they wanted her to watch with the cap on, to see what her little brain does when she sees people saying simple words she should understand and what her brain does when she sees people making random sounds, and then it was time for her autism testing.

After that we went into another room, across the hall.

First they did an ADOS.

The ADOS is basically done where the test administrator plays with the child, or in Tessie's case attempts to play with the child.  Tessie used her rather considerable willpower to ignore Ms. L, and wander around the room, testing out the baby gate that led to the hallway, and refusing to give the baby doll a bath, make the frog jump, or look cast a glance at the board book.

When the tests were done we sat and went over the results.

Tessie qualifies as having autism according to the test results, although the study doesn't offer official diagnoses.

We'll receive the test results in a few days in the mail, on the official university letter head, to give to her doctors.

The results will look kind of serious and scary at this point (or so we've been warned), but that's in part because of her lack of interest in the test giver, one of the difficulties in administering these tests to tiny kids on the spectrum, and they told us to remember that Tessie is a happy, easy going baby who does communicate in her own way quite well, even if it is without words.

We talked a bit about Maggie's results, when she was three, on the same test, and how I'd remembered opening a the packet and seeing her scores in the lowest .5% "of kids on the spectrum" and being afraid of what that meant for her future and now she's doing things that I couldn't have imagined back in 2013.  "I imagine it's not unlike that." I said, watching Tessie throw blocks around the room.

The girls have similar verbal skills (looking back to one year old Maggie) and neither one was particularly interested in playing with the toys in a neurotypical way.

So that's where we are now.

We're eight months away from her appointment for autism testing in Michigan.

We're praying that there are enough cancelations that she can get in sooner, because until she gets seen for that test she will get one hour of week of therapy and that's it.  Which, knowing how important early intervention is, is killing me.

Even with all the trainings I've done, and everything I've learned with Maggie, I'm not even close to be on par (success wise) with the therapy Maggie receives and doing what we do at home her delay has grown from 20% to 40%... it makes me feel physically ill to think of what it will be on August 8th.

The lab strongly recommended we come back for testing at the Developmental Center at Boston Children's.  Paul's going to call our insurance company as soon as the weekend is over the try and get it approved.  I am not optimistic.

Our last conversations with them have involved them denying Mags' seizure/migraine med last week suddenly (apparently, after years, they suddenly objected to the sweetener in the compound... sigh...), which was ultimately approved, and the denial of Tessie's genetic testing to determined whether or not she needed a tracheostomy and a ventilator when they were still afraid she had CCHS, which they continued to deny testing for (and which the genetic testing company ultimately covered).  So. My faith in them is very small.

I'm going to be making some phone calls and trying to determine how much of a difference going will make, and I'm going to be trying to get a feel for the length of the cancelation list at the moment, and I'm trying to see if they'd allow us to travel inside Michigan for testing at another location (pretty sure the answer is no, but I might as well ask... because if traveling to the UP meant shaving off months I would be in the car like that).

If the insurance says no to the developmental testing the lab recommends I'm not really sure what we'll do.  I guess we're taking it one day at a time right now.

For the moment the most important thing is that our tiny whirlwind princess is happy, and healthy and communicates remarkably well with us and all four of her older brothers and sisters who are only too happy to answer her babbles and rough house with her and keep her out of the trouble that, like a certain older sister, she tends to get into.

Who turned out the lights?
And that is the latest.

At least this time we have an idea that the road ahead isn't nearly as scary as we thought the last time we were here.  It's just different.  Challenging, certainly (but everyone has challenges).  I just wish I could get those tests through now.

The waiting is the hardest part.


  1. It suddenly occurred to me as you talked about not playing with toys neurotypically that I am not sure I know what neurotypical play looks like since your kids way of playing looks perfectly fine to me....I wonder what that says about me? I hope you get the interventions faster than you expect. Interventions are education, so would St. Elizabeth Ann Seton be the right Saint to ask for help on this?

    1. She might be! I should probably come up with a slew of saints and novenas!

      Saint Dymphna is a favorite of mine too!

  2. I'm trying to keep remembering those words, that we don't know what the future holds... my daughter (she is 18 years old) was diagnosed as on the spectrum a year ago this month. There was obvious signs throughout her life - but everyone blew them off... back in the "girls don't get autism" years. She is coming along and doing more now than I could have expected last year at this time. I'm still scared about the future to be honest, but even if I sit here in a trembling mess of tears it won't change anything. KWIM? And so we keep working. I'm glad Paul is so involved.

    1. Totally. I'm so glad you guys finally got those answers. I think it's still hard to get "higher functioning" girls diagnosed (as much as I try to avoid those labels). Prayers for you guys too. One day at a time. One day at a time. I know that's hard though. Hugs and prayers!

  3. Glad you got some information! What a cutie. Can you hire a private practice developmental pediatrician or developmental psychologist to make the Dx so you can get services going faster? 8 months seems like an awful long time for a rubber stamp!!

    1. That's what I'm hoping to find out. So far the answer has been no, that our insurance will only accept a diagnosis from one specific place, in one specific county, and they have the wait list (I guess that's why they have the wait list, because everyone is waiting for the same thing and can't go anywhere else). It's so frustrating. I've heard other insurance companies have even longer waits though... it sounds like it's kind of a mess all around.

  4. I'll keep praying!
    (And...I DESPISE driving in that area.)

    1. Thank you!

      And I was so relieved Paul was there to drive! When we first started discussing driving instead of flying I wasn't looking forward to either the cross country drive or the drive up to Boston!

  5. I hate that you had to make that trip, and especially drive in/around Boston, though I guess Paul must have been used to it. I'll be praying that you can get an appointment sooner than 8 months - I'd go nuts!!!

    I know that Paul's folks had to be thrilled to see you, however briefly.

    1. The visit was definitely the part that quickly turned the "ugh we have to drive for seventeen hours" into excitement. But I always forget just how big upstate New York is. Being from California I always think that it doesn't look "that big" on the map. But it certainly feels big when we drive across it.

  6. Hope all of you enjoy Curious George movie and your favorite TV show at that with the Tessie.


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