Saturday, December 3, 2011

Pull up a chair . . .

As many of you know, we had our Assistive Technology re-evaluation with the DOE yesterday. The point of this meeting was to determine, after a 6 week trial with a TechSpeak, whether she should stay with the TechSpeak or possibly move to a high tech device.

I couldn't figure out the best way to post an update about it.  I think people often say "The meeting was a fight", but unless you've ever been in one of these DOE meetings, it's hard to understand what that looks and feels like.  And if you have been through one of them, you know that it often is so long and twisty that afterwards it just feels like a blur and is difficult to re-tell.  So the best way I could think of to tell you about the meeting was to try to take you inside and show you, so you can see for yourself, rather than just summing it up.  Here it is, in all of its disjointedness . . . scenes from inside the meeting.

Maya sits in a little chair with the TechSpeak in front of her on a table.  Sarah, her lovely speech therapist, sits next to her in another tiny wooden preschool chair, holding a big bag of farm toys (barn, tractor, animals, etc).  Britney, the DOE-assigned assistive tech evaluator, sits behind Maya, peering over her shoulder, watching to see what buttons she’ll tap on the TechSpeak, notepad poised on her lap.  I stand in the doorway with Maya’s teacher, surveying the scene, trying to watch through both my eyes and Britney’s eyes . . . and realizing that those two sets of eyes are seeing very different things.
“I want to see her choose between three items,” Britney says, pen in hand.
“Ok,” says Sarah, “Maya, do you want the sheep, the cow or the pig?”  She holds up the three plastic toys.  I hold my breath.
Britney watches the back of Maya’s head turn slowly from side to side as she scans the TechSpeak, conceivably looking for the sheep, cow or pig.  Her head stops moving and she makes a small nonsensical sound.  Her finger reaches for a button—zebra!   He hand starts moving faster, tapping out- zebrazebrazebragiraffe.   Britney takes notes.
I can see the front of Maya’s face, so I could see her look at the cow and the sheep and turn away, looking for something more interesting.  I understand Maya’s sounds, so I knew that the little “hmph!” noise that she made meant something silly was coming.  That’s the noise that she makes when she’s kind of delighted by something.  And I could see her watch Sarah for a reaction when she said zebra . . . and then smile sneakily as she said zebrazebrazebragiraffe.
I see a silly, naughty, clever girl.  Britney sees a girl who didn’t understand the question.


Britney makes the case for keeping the TechSpeak.  She makes good points, her arguments are strong.  She says that Maya isn’t yet using the device to the fullest of its capabilities, and that’s true.  For example, she’s not making spontaneous observations (like I see-Billy, a two button combination) during morning circle.  This is where Maya’s teacher jumps in and said “But the thing is, no three year old would really say that, you know?  If we ask who is sitting in the circle, Maya will just say Billy, not I see-Billy. 

Britney talks about different ways the TechSpeak can be programmed, different uses for it in the classroom.  She tries to spin the limitations of the device as simply poor programming choices---insisting that if it was just programmed differently, there would be different, possibly more useful, sentence making possibilities.   She has a lot of pro-TechSpeak arguments.  I zone out.  It all sounds like I’m-in-charge-I’m-making-this-decision-I-know-what-is-best-you’re-keeping-the-TechSpeak-and-here’s-why.

Then she changes tactics and speaks about the challenges of using the Dynavox Maestro (the high tech device that would be the next step if she decides the TechSpeak is too limiting).  She speaks (at length) about the cognitive skills needed to work a high tech device like a Dynavox.   “To use this, a child needs to be able to understand categories.  If they want milk, for example, they have to be able to tap I want, then remember that milk is in the drink folder and tap drink, then scan the page to find milk, then tap the top bar to hear I want to drink milk and then tap the home button to get back to the main screen,”  she was holding up her hand, ticking one manicured finger off for each button tap.  “That’s a 5 button sequence, and the child needs to remember where the different categories are.”

“She could do that,” I say, without hesitation.  I mean, I think she can . . . I’m pretty sure,” I add, in my head.

Britney sighs and looks to the teacher and the speech therapist.    The teacher nods, yes, Maya is smart.  I barely resist the urge to hug her.

Britney takes out the Maestro that she’s brought with her and starts to fiddle with buttons, turning it on and setting some things up for Maya to see.  In a very prove-it-to-me tone, she tells me that she wants to see Maya form a 3 button sentence--- I want- to drink- milk.

I show it to Maya, who is only slightly, cautiously interested.  Mostly, at this point, she’s trying to get past me and into the hallway.  We’ve been in the room for over an hour.  We all want to escape, I think, but Maya is the only one actually trying to put that plan into action. 

Tears fill my eyes.  I force them back.  I will not cry during this meeting.  I will not.

“She’s not going to do it,” I say.

My frustration during this meeting is that, more than anything, I feel like we are assessing Maya’s obedience, rather than her ability.  No, she will not tap that I want-to drink-milk because, well, she doesn’t want to.  She doesn’t want to drink milk and she doesn’t want to tap a sentence and she doesn’t want to be in this room anymore.  She is 3 and she is stubborn and she is done and she doesn’t want to.

Britney is insistent that she only gives the Maestro to children who demonstrate that they are capable.  Children who are able to sit in the evaluation, watch someone model a sequence a few times and then demonstrate that they can do it.  That shows that they understand and are capable of managing the device. 

I get the feeling that she doesn’t give these to many 3 year olds.   But I don’t really care.

I want it.  I want to see Maya with it and I want to decide for myself if it’s a fit, with the help of her teacher and therapists, who believe in her and will put in the time and effort to give this a fair chance.  I want it in Maya’s hands, and I want to see if she has the motivation and ability to learn how to use it.  I want to see if this can be her voice.

No offense, Britney, but over my dead body are you going to be the one to make that decision, unchallenged, after a few hours in a hot, overcrowded office with my kid.    That’s not how this is going to go down.


The meeting is long.  Time is spent observing Maya and debating-more debate than observation.  Britney talks the most and I talk the second most and the teacher and therapist and mostly quiet, which is good because their words seem more powerful, since they are so few.  They request a six week trial with a Maestro.  If it’s not a fit, we can give it back at the end of the trial period and switch back to the TechSpeak-no harm, no foul, at least we’ll know for sure. 
Britney does not love this idea, and says that we’re trying to move too fast---the Word Book is relatively new, the TechSpeak is relatively new, we should just stay focused and stay where we are.  I argue with her about vocabulary size and limitations and not meeting needs.  She understands my points, but disagrees.  I understand her points, but disagree.  Maya’s teacher mentions, again, a trial period with a Maestro.  We go round and round and then Britney says . . .
“Well, if I did agree to a trial with the Dynavox . . . “ and I don’t hear the end of the sentence because I know that she will give it to us and the relief is immediate and overwhelming.  I nod along with whatever conditions she is laying out.  Tears are in my eyes again and I remind myself that I will not cry here. 


The details are arranged, date for delivery of the device, date for re-evaluation.  We do paperwork and print things and wait for faxes to go through and clean up toys.  Now that we aren’t arguing anymore, we are pleasant.  Britney offers, “You know, we all want the same thing.  We all want something that will work for her,” and I know that she means it and she’s a nice person.   But I still resent the fact that she has the power to make these decisions, and that I’ve spent two mornings this fall trying to prove to her that my kid is smart and deserves a chance with a device.  


I am crying before I get to my car.  The silent type of tears that fill up my eyes and overflow and spill down my cheeks without any effort or noise, they just come and I can’t hold them back any more.  The beauty of the sidewalks of NYC is that so many people are moving so fast that no one notices a crying lady walking down the block—and if they do, they keep to themselves anyway.  Tears of relief that the meeting is done mingle with tears of anger that I had to fight so hard and tears of anxiety at now having to teach Maya this device only to re-live this meeting at the end of January. 



Chicory Blue said...

Please take more videos of Maya and show them to Britney at your next meeting.

Also, remind Britney that what she is seeing that day is a "snapshot" of Maya. Taken that day, with a stranger in an atypical environment.
She knows this (I hope) but sometimes we all need reminded.

I am an preschool SLP with experience with AAC. I wouldn't hesitate to jump to something dynamic like the Dynavox after seeing those videos you take of Maya.

Just the Tip said...

I can feel your frustration through your words, and your anxiety & your relief.
I can't imagine how hard it must be for you, I got angry at the dr's office this morning for refusing to see Peyton for a UTI, that I knew she had, and almost burst into tears.
The other kids had a cold! Urgent care won't cath a pediatric patient, I know I've called them all, before.
It really sucks to have to advocate for things like this, because you KNOW what your child needs, and it's such an emotional toll to get someone else to see what you see everyday.
Hugs, it's all over, for now, and just relax and see if this really is a good fit for her right now.
You are a great mom!

Jane Schulz said...

This is all so new to me! My son is 55 years old and when he was 3 we had no idea where we could get help. The speech therapist we hired on our own said he didn't have the inner language to talk; we knew better.

The Director of Special Ed said he couldn't go to school until he was 8 years old. I taught kindergarten and took him with me.

I don't understand why professionals can't realize that parents know their children better than anyone else. And I thought that battle was over.

Keep fighting!

Toni said...

As I am earning my PhD in psychology , your post made me realize that so many academics and practitioners have the mistaken conclusion that the love, hope and emotion parents have for their children in someway is a substitute for intellect , observation and general common sense. Why don't they stop and think that love and intellect form a wonderful nurturing combination for parenting a special needs child? It appears that Brittney is really underestimating you more than she is underestimating Maya.

Cheryl (in Buffalo) said...

Just sending you strength....I feel your frustration.....and know that all of the fighting and difficult times will be worth it. take care.

Molly said...

I think people who evaluate 3-year-olds should currently be spending a lot of time with 3-year-olds. Those of us who spend time with 3-year-olds know they are not canines, trained to obey commands; the 3-year-old is a clever, stubborn, complicated, amazing, twinkly human being. Also, I don't think 3-year-olds should be evaluated in an office setting, ever!

Annie said...

I would hope that at a minimum anyone evaluating Maya would take the time to look at a few of your videos. And if they had they would KNOW that Maya is capable of categorizing. I mean watch her flip through the work book remembering more or less (as well as anyone of any age would) what she was looking for (animals) and what page it was on and then where it went back.

I am going to say again that I think the fact that only a small percentage of the population who needs a communications device has the kind of high cognitive ability combined with super strong (almost desperate) communiative intent and concentration (for a three year old) that Maya does is going to be an issue. The "experts' just aren't used to dealing with this level of intelligence and are apt to think it's just a parent's wishful thinking. But really watch Maya on those videos and you see, no it's not just about a mom thinking her kid is functioning at this level, she actually is.

Ginny said...

I'm so glad Maya is able to have a trial with the higher-tech device. You're such a good mom and advocate for your little girl!

Jon and Alyson said...

I had silent tears for you Dana! It is the most difficult thing to keep your cool, (so that you don't look like the spazzy mom) and advocate for your tiny person.

One of my fav quotes: To be treated fair, doesn't always mean to be treated equal.

I don't think alot of
"professionals" understand that. They only see a snippet of our special people while we see it all. Great Job!! and YAY for the Dynavox.

Rosemary said...

You should be proud of yourself! You are an awesome advocate. Those meetings are horrible. It's obviously an issue of cost, rather than Maya's ability to use the equipment. I'm glad her teacher stood up for her.

It is a shame that everything has to be a battle and it is not fair. Keep up the good work.

Lucie Knight said...

Powerfully written. I was in the room with all of you and observing all of it. Maya is a wonderfully typical 3 year old in so many ways.

You can see the gleam in her eye in the videos. Thank you for sharing her with all of us.

The Wagner Three said...

I am so glad you shared this the way you did. We are not yet to the IEP meeting stage, and I am a bit terrified fo the prospect. Reading this stuff helps me mentally prepare in some way for when we do. You and Maya are so fantastically lucky to have one another, amd I'm lucky to be able to learn from your experiences. I bet Maya will rock your socks off with the new device :)

Katie said...

I know that I don't know you, but I am proud of you for standing up for your daughter. Britney may be teh expert on this device, but you are the expert of Maya. ANd because of that you have to fight for what you know is right for her. I hope everythign goes smoothly during the trial period and Maya pick it up quick. Good Luck