Wednesday, February 27, 2013

Counting for fish, and counting fish

As of this weekend, we are suddenly all fish, all the time.

We decided to take another shot at potty training, this time with a new plan.  We told Maya that if she can fill up her whole sticker chart with stickers (earned when she uses the potty) then she can get a pet fish.  Dave got a 10 gallon tank down from the closet (because when you're a zoology lady, you always have at least one 10 gallon tank tucked away somewhere) and we put it on the bookcase in her room.  She is so excited.  After she earned 5 stickers, we put water in the tank.  10 stickers will earn her some new glow-in-the-dark stars for her ceiling.  Other little rewards will be built in along the way (trips to the pet store to pick out gravel, plants, etc).  We're only on Day 4, so it's too early to say whether this will be the magic thing that works, but so far it's definitely working better than anything that we've tried before.

It's not a great picture, but you get the idea. As of last night, she's up to 8 stickers. She also gets m&ms every time she gets a sticker.

Because we're hyping up the fish, we've been looking at a lot of fish pictures.  I printed some out to hang on the bathroom door, and printed an extra one for her to take to school and show off.  On Monday morning, as we were waiting for the bus, I shot a quick video of Maya counting the fish pictures on her paper.  I point at each picture and she says the numbers.

Besides being adorable, the video is impressive because she's been making so. many. sounds.  In the past 6 months she's had a vocalization explosion.  She used to be mostly silent, only making noises for things that she knew how to say (like dada or buh (bus))---but suddenly she's trying to imitate everything.  6 months ago she only had one vowel sound, now she has several.  It's especially cute and brings with it a lot of hope for the future---as her approximations get more accurate, others can understand her speech better, and that's really good for her.  She loves saying "hi!" and having someone say "hi" back---it's clearly exciting for her to use her voice and have someone respond.

Here it is, Maya counting (with subtitles):


Wednesday, February 20, 2013

A Tale of Two Evaluations

As we trudge through the process of figuring out the best kindergarten fit for Maya, we are once again back in the world of evaluations and reports.  This is not a fun place to be, as any parent of a child with special needs can attest to.

First, I will concede that these reports are necessary.  It’s important to identify areas of strength and weakness, to determine whether a child qualifies for services, and which skills should be targeted in the future.  That all makes sense.  But then things start to break down.

Evaluations are often conducted by people who have never met Maya prior to said evaluation.  These well-meaning people tend to greet her enthusiastically, which makes her clam up and withdraw a bit, smiling shyly.  In turn, the evaluator lays it on a bit more thickly, lots of cheerfulness and toys laid out and “show me your talker!” and “maya-do-you-want-to-play-with-blocks-or-maybe-a-doll-or-maybe-this-school-bus-or-maybe-do-you-like-crayons-better-do-you-know-your-colors-maya-do-you-like-pink-do-you-want-this-pink-crayon-maya-maybe-can-you-say-crayon-with-your-talker-no?-yes?-well-maybe-you-can-say-pink-or-if-you-don’t-have-pink-you-could-say-red-I-guess-maya-do-you-know-how-to-turn-your-talker-on-is-it-with-this-button-here-hmm”.  And Maya just smiles.  Or maybe tries to hide her face with her coat. And maybe sits on the floor.  And maybe knocks over a toy or giggles and tries to swipe a crayon. 

If the adult is putting on a show, Maya is generally content to watch. 

I know this, but can’t get over the awkwardness of saying what I really think needs to be said . . . “Hi, I’m Dana.  If you want her to pay any attention to you, your best bet is to start talking to me and ignore her for a few minutes.”  (because then she’ll act like a typical preschooler . . . hey, what about me? Don’t you want to see my talker? Hey---is that a school bus?!?!  I want it!)

Typically, I sit back. It’s the scientist in me.  I don’t know what protocol evaluators are following and I don’t want to skew results.  I imagine that they, as professionals, have a big bag of figurative (and literal) tricks, and that they will present them in some sort of interventional and motivational hierarchy.  I imagine that they are masters of body language and social intelligence, and will push in and pull back until they have figured out how to dance with Maya through the evaluation.  I imagine that they are skilled experts. 

As it turns out, sometimes they are.  Sometimes they are decidedly not.

In the category of decidedly are not, let’s revisit Maya’s psychological evaluation from 2010.  This evaluation, required for determining whether she qualified for a therapeutic preschool, was also our first attempt at cognitive testing.  This evaluation, and the report that came as a result of it, had been so abysmal that I wrote a longer piece about it---here’s an excerpt, so that you can get a look inside the appointment:

I think back to the afternoon of Maya’s psych evaluation.  Oh wait, I mean the evening of the eval, as the psychologist arrived 45 minutes late, only getting down to business at 6:15, thirty short minutes before the girl’s bedtime.   I eyed her suspiciously, as she looked to be about sixteen and appeared to have never interacted with a young child.  She handed me a survey to complete and I sat off to the side, dutifully penciling in bubbles, as Maya laid face down on the floor and eyed the psychologist suspiciously through one eye. 

Maya!  Do you want to play with the DOLL?  Which toy is the DOLL, Maya?

(Maya made no motion.  I think she even willed herself not to blink.)

Here-can you see them, Maya?  She carefully moved her line up of toys closer, now an inch from her nose.  Which one is the DOLL?  Do you want to play with the pretty DOLL, Maya?!

Maya turned her head away, saw me sitting across the room and smiled at me.  I stifled a laugh.  I wouldn’t want to play with that crazy lady either, silly girl. 

And so it went for the next forty-five minutes.  Toys were presented and ignored.  Requests were made and ignored.  At some point it struck me that this woman might end up writing that Maya was catatonic unless I intervened, so I made her sit up and engaged her in some play with a few blocks.  See, she listens, I thought, you are just very boring and now it’s bedtime.  When she left I joked to Dave “Well, it shouldn’t be a problem getting into a specialized preschool.  That lady most likely thinks that Maya is a vegetable.”

But now, on paper, it didn’t seem funny anymore.  The typed words looked official, the opinion of a professional, and this professional said that Maya’s cognitive functioning was abysmal.  I skimmed her observations and then this gem jumped out at me: Alexandra was not able to stack blocks. 

Who the hell is Alexandra? 

You mean to tell me that the late, unengaging psychologist was also not yet proficient at copying & pasting?  Really, lady?  Your report is bringing me the news that my child is severely impaired, and you can’t even do a quick proofread?  I imagined her quickly printing off the report and running out to the bar with her young, unburdened friends.  I hated her.

Further on, she wrote that Maya’s “expressive language skills were slightly stronger than her receptive language”.  Translated, this meant that she could speak more words than she understood.   Since she could only say one word (bye!), this meant that the psychologist assessed her to understand zero words.  Zero.  How would she explain what I saw as I peeked into the living room, where her OT was saying “Maya, pick up the yellow duck and put it in the box”   . . . and Maya did, of course. 

That psychologist didn’t know Maya.  Not at all.

That psychologist was not a skilled professional (professional, yes, skilled . . . eh).  She did not have a big bag of tricks, figuratively or literally or even imaginarily.  And lest you think that I am unfairly bashing the therapist, let me say this: I know Maya can be a challenge, a little puzzle.  But she was 2.5, and toddlers are tricky---she should have been prepared to coax her out of her shell.  And if she couldn’t---no worries! I was sitting right there, and would have happily, accurately, unbiased-ly answered questions about what she could and could not do. But she didn’t ask.  And so I fault her, fair and square.

The report from this evaluation contained one sentence that gave me pause:  Maya’s cognitive functioning is in the Extremely Low Range as compared to her same age peers.  This score is in the 0.4th percentile, meaning that she performed as well as or better than 0.4% of children her age.

Given the inaccuracy of the observations about her receptive language, I should have dismissed it outright.  And eventually, I did, but for the first hour or so after I read it, it stung.   And I doubted Maya, and I doubted myself, and I wondered if this lady could have seen something that I haven’t been seeing.  And then I shook it off, but a little dark shadow lingered . . . because no matter how sure of yourself and your child you are, when you see terrible things written about them on official letterhead from an official professional a dark shadow of doubt lingers, at least temporarily.

And that brings us to December 2012.  Two years later.  A new evaluation team (2 people instead of one), a new psychological evaluation (this time for kindergarten), a new report.  This time, with truly skilled professionals---two women who were ready for a challenge, who sat on the floor when Maya sat on the floor, and climbed up to the table when Maya wiggled into a chair.  Women who turned to me when Maya was shy, giving her a break.  When they weren’t getting far they asked me what I thought might work, welcoming my input and encouraging me to pull things out of my own perpetually stocked bag of tricks . . . m&ms and stickers and a juice box, oh my!  And Maya worked for them, answering questions and taking breaks and playing games, and 90 minutes later we had more accurate data than anyone had ever collected about Maya, ever.

I waited anxiously for the report.  Weeks went by.  I was nervous, and mad at myself for being nervous.  My hopes were up and I hate getting my hopes up.  I have a file full of reports that have taught me that they will not be accurate (in my opinion) and I will be agitated by the results.  And I’ll end up with lingering shadows that take weeks to clear away.

The report arrived, via email.  I saw it on my phone.  We did dinner and bedtime and I sat at my computer to open the file and read it, 10 pages of details and data and recommendations.  I skimmed it first, to see if it was worth reading, and then went back to read it carefully.  And finally, someone got it right.

I don’t generally talk about the numerical details of Maya’s reports, because –quite frankly- they are nobody’s business but our own.  However, I share the details below to boost the confidence of others who are receiving reports during this evaluation season and deflating.   I deflated a little when I got the 2010 report, even though I was pretty sure it was inaccurate.  The numbers made me scared and sad for Maya: 0.4th percentile, 1st percentile, 0.3rd percentile.  These are not good numbers. 

The new report has better numbers, but it has bad numbers too.  The bad numbers roll off my back now, as we’ve seen them before. The good numbers, though, those are new . . . and even more important than the numbers are the qualitative observations that are embedded throughout the report.

75th percentile:  Her receptive language is “high average” among her same-aged peers. (yes)
50th percentile:  Her academic readiness is “average” among her same-aged peers. (yes)
While certain tasks were attempted, it is felt that scores are likely an underestimation of her capabilities and potential. (yes)
Her performance on the current evaluation should be considered as a baseline of her functioning at this point in time, but should not be used as a long-term prognostic indicator. (yes)

It’s been almost 4 years since we entered the special needs world, creeping nervously into Early Intervention.  I was scared in the beginning, and worried too much about assessments and milestones and where we were and the future.  As time passed, I understood Maya more and more, and I saw her strengths and her cleverness and I believed in her, so much so that I knew the reports were not gospel .  I’ve listened to many scared moms tearfully speak about bad reports and I want to tell them---don’t worry, your child is the same child that they were before you opened that envelope.  That report might not be accurate.  Keep the faith. 

Until now, I had no data to back up my “keep the faith, ignore the reports” general stance . . . I could have just been a biased, delusional mom.  But now I have a report that confirms that the other reports were clearly inaccurate.  I have a report that says that she is smart and she understands, as much as an “average” kid her age does.  I have a report that says that I was right to trust my gut.  And with this report in my corner, I’ll say now what I wish someone could have said to me back in 2010:

The truth of the matter is that reports are just opinions on letterhead. Some reports are informed, thorough, intelligent, professional opinions on letterhead, that should be valued and reflected upon and future decisions should take their findings into account.  Some reports are mis-informed, inaccurate, not-correctly-spell-checked, best-used-for-sticking-in-a-file-and-forgetting-about opinions on letterhead. 

Reports are a means to an end.  You need them to get services,  and you should read them to get details that you might need to use to fight for services, but read it as if it’s written about a stranger. Don’t take it personally.  Bad things in reports are actually good, as they’ll help you to get additionally therapies/interventions/support for your child. Note any weaknesses that you actually agree with, so that you can target them with your child in the future.  After you highlight what you need, file it and forget about it.  Your child is the same person as they were before you opened the envelope.  You know your child better than the evaluator.  This evaluation does not have any power to predict your child’s future . . . and it shouldn’t have any power over you. 

Breathe.  Cry about it or laugh about it or do both.  If it helps, make a photocopy and shred it up, or burn it.  Then do something special for yourself (because if you have to read these reports, you deserve something special for yourself).  Then, move on.  And keep the faith.  


Friday, February 8, 2013

Parker, then and now

We got Parker in April of 2010.  His acquisition was the culmination of a few frenzied months of research, phone calls, emails, and paperwork.  At the time we were seeing a feeding therapist twice a week.  She had a little, fluffy, hypoallergenic dog in her office, and when Maya would become exhausted or cranky (which was often the way during long bouts of oral motor exercises) we would enlist Sammy (the dog) to run around, chase a toy, etc.  Maya would collapse into giggles, reset herself, and we would move on. 

Dave accompanied us to a session one day while he was on a work vacation, and we joked “if only we had a dog at home.”  We live in a dog-free building.  About 5 minutes later we had decided that maybe we could petition the board for permission to get a dog for Maya.  About 10 minutes after that I had a tentative plan, and by the next morning it was full steam ahead.  I put together a proposal with letters from doctors and therapists, we got approval from the board, and we found the perfect puppy.  (Well, it wasn’t quite that fast, it took a little over a month.)

The specific puppy plan evolved rapidly. First, I wanted to get a dog from a service organization, but after a few days of phone calls I realized that the wait lists were long (about 18 months) and the process was complicated.  Being the instant gratification type of girl that I am, that was no good.  Truthfully, I wanted a dog asap---I wanted Maya to be able to lean on a dog as she stood and wobbled.  I wanted a dog who I could have take slow steps so that Maya would step along with him.  I wanted a dog at home to motivate her during the (innumerable) home therapy sessions that she was having.  I wanted a dog now.

I decided that a standard poodle was the ideal dog (smart, loving, gentle, and as hypoallergenic as dogs come) and emailed breeders up and down the east coast, explaining our situation and the exact personality that I was looking for (sweet, calm, not nervous or dominant, gentle but curious).  We found the most lovely family who had the perfect puppy for us and we got him.  He was Maya’s BFF, and I loved watching them grow together.  

 in the beginning they were both little

Parker, when did you get so tall?
But as Maya grew and progressed, my goals for Parker changed.  As she started to walk independently it was clear that he wouldn’t be needed in as much of a service role as I was preparing for.  He wouldn’t need to help her walk, to wear a brace that she could hold onto to take steps.  And his path shifted a bit, from service/therapy to therapy.

I get emails about Parker every so often—how is he, what does he do for Maya, where did we have him trained, etc. and so I thought it would be nice to explain and show a few examples of how he helps her out.  I trained him myself.  Parker and Maya adore each other, and they play at home like any kid would with her dog (throwing toys, giving hugs, etc).  In addition, he provides some extra motivation and companionship when Maya needs a little extra nudge. Here are a few recent examples:

1. He cheers her up when she gets off of the bus.  Every day he waits for the bus to come, and greets her enthusiastically.  While this is pretty typical stuff for a dog, it’s especially useful for me, because Maya loves the bus and is generally pretty disappointed to see me and have to get off the bus.  Parker jumps around and sniffs her and nudges her and wags his tail and it helps. 

2. He helps when she doesn’t want to go inside.  Step one: get her happily off the bus.  Step two: get her into the building.  I could just pick her up, but that’s not really teaching anything.  It’s much more effective to have Parker help convince her to move along.  Here's an example:

3. He helps when she needs to work on skills and she really doesn’t want to.  Maya and the stairs have been enemies for a long, long time.  The folks at school have been trying to get her to practice walking up and down the stairs and she refuses.  Like, she’ll flat out just sit at the bottom of the stairs and not move.  So we’ve been working on it at home with strategically placed bowls of raisins, and she’s been practicing (climb a flight, eat some raisins, etc).  After 2 weeks she hit a wall at home and lost interest.  She told me that she didn’t want to practice the stairs.  Enter Parker, the ultimate silly motivator.

After he got her excited to work on the stairs again we had them walk together---and it was the first time that we’ve gotten her to try working on the stairs with only one hand on the railing (typically she’s desperately clinging with both hands).  This is definitely something that we’ll do again to practice using one hand.  And major props to Parker, who isn’t a fan of stopped mid-flight, but does it anyway.

So that’s some info on Parker, in a nutshell.  He’s a wonderful dog and a great companion for Maya. 
And I think he’ll be buddies with Will, too.