Perceptions Drives . . . Everything

from the smart people at www.praacticalAAC.org

Perception

Maya loses her balance and falls regularly. She walks the way a bowling ball rolls down a lane with bumpers---diagonally, occasionally veering into a wall and bouncing back to continue crookedly the other way. She seems unaware that her mouth often hangs open, which leads to drooling issues. She often has a hand or fingers in her mouth. When you speak to her, she may or may not look at you, or in your direction. If you talk to her when she is involved with something else it’s quite possible that she won’t even look up, and you’ll wonder if she’s hearing, or able to process, anything that you’re saying.  She may or may not answer yes/no questions reliably (favoring “yeah”) and so when you speak to her you wonder if she’s able to understand what you’re saying or just answering automatically.  You may know her (alleged, per her mom) favorite topics, and try to engage her in conversation, only to be met with blank, open-mouthed silence.  You may have heard that she can (allegedly, per her mom) use a fancy communication device, and you turn it on (thinking “this is way too complicated, with far too many buttons”) and put it in front of her and she looks away, and you say “tell me something with your talker” and she stares at you or slumps in her chair and smiles, teetering too close to the edge and looking sure to fall.

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When Maya is excited, she can move with speed that I never would have imagined a few years ago. I hold my breath when she runs, each unsteady step seeming sure to lead to a vicious fall, but I am impressed with the way that she usually manages to steady herself. The surge in speaking that has happened over the past 10 months tells me that she’s starting to coordinate her mouth muscles in new, wonderful ways. Maya is clever and surprisingly funny. She likes to laugh and to make people laugh and will tell “jokes” that are only funny to preschoolers (like telling us that it’s rainy on a sunny day, or telling us that she wants an alligator for dinner---each followed by a cackle). She is creative, pretending that she’s taking her dolls for a walk not to the grocery store or the doctors, but to the amusement park where they all ride roller coasters. She has a memory that consistently surprises me (if I tell her before school that she can have a cookie after school, you better believe that her first words off the bus in the afternoon are “cookie, please”). I wish I knew how her brain processes things----all too often I see her focused on something so intently that I’m nearly sure she can’t hear me at all, only to have her suddenly turn and answer my question a minute or two later  . . .  as if I were rudely interrupting earlier and now that I’ve given her some space she’ll comply and answer my question.  She has reminded me about numerous appointments that I would have forgotten (“Monday! Speech therapy!”).  She is a master manipulator, and has learned to avoid questions and demands by creating a situation that requires the adult to abandon their request and responded to her instead----like threatening to drop something important, or dangling off furniture so that she needs to be repositioned, or putting her head down and acting as if she’s so tired that she couldn’t possibly continue. She keeps us on our toes. 

Perception drives expectation

When Maya was two and a half she was evaluated by the preschool section of the DOE (among other things, these evaluations determine whether children have impairments significant enough to qualify for a center-based preschool, where all therapies would be provided on site).  Her scores qualified her for services across all domains (speech, physical therapy, etc) but one number stood out: her cognitive functioning was in the 0.04^th percentile for her age. This meant that out of all 2.5 year olds, Maya was in the lowest half of a percent, cognitively speaking. Based on the data from these evaluations, it seemed that Maya was severely, severely impaired . . . a reader of these reports could expect a child that was close to vegetative. Unable to walk, unable to speak, with almost no receptive language (about 2 words), leaving her unable to understand anything said to her. The lowest of the low. She needed a therapeutic preschool, where they will hopefully be able to make some kind, any kind, of progress.

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When Maya was two and a half she was evaluated by the preschool section of the DOE, strangers who arrived with a flourish, loudly asked many questions, and then disappeared. She was shy, and her responses ranged from nervous to puzzled to noncompliant. The woman who would go on to determine her “cognitive functioning” was late, unengaging, and, well, not very good. The results come in the mail a month later, and while it’s never fun to get crappy test results, we see them for what they are (biased, ridiculous, a means to an end and nothing more).  Maya is signing, making animal sounds, playing in an imaginative way (little animals go in the barn, little people sit in chairs for a pretend birthday party, etc), and shows clear understanding of a million little things all day long. She’s got preferences and opinions, and she is determined.  She needs to go to a therapeutic preschool, where they will hopefully be able to recognize her amazing potential, and have the skills to work with a child with a sharp brain but an uncooperative body, to help her gain movement, knowledge, and the ability to communicate what’s going on in her head.

Expectation drives opportunity

Before Maya met her preschool teacher, the teacher had already met Maya. Although we didn’t have the concise, powerful sound bite that “expectation drives opportunity,” we had that understanding (Dave and I were both teachers, and we watched students rise to high expectations year after year) and we were certain to help Maya’s staff set the bar high for her. Prior to the first day of school, they received a packet of information about her, and video clips that showed some of her skills and translated her signs. We had already exchanged emails about her, and the main messages were “don’t let her trick you into thinking she doesn’t understand you---she always does” and “push her---she will keep impressing you if you keep pushing her.”  Maya had been assigned to the smallest class, the class of kids who are, by and large, the neediest of the school (that’s where those evaluations put her, and it turned out to be fortuitous, because the staff in that room was fantastic). Her teacher saw the strengths in all of the kids, and pushed. When she showed me ideas for a communication board, we ran with it at home, and turned it into a word book. The teacher embraced the word book and then supported our quest for assistive tech, despite never before having used a full, dynamic communication system in the classroom.

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When the assistive tech evaluator (L) met Maya, she didn’t expect much at all. L assigned her a low tech device, despite our insistence (and Maya’s demonstration) that she needed so much more. L said “I only give these devices to students who can show me during the course of the evaluation that they are able to use it to make sentences.” This boggled my mind, as I couldn’t imagine preschoolers picking a system up so quickly---yet I was sure that Maya could do it eventually. “How old are the kids you typically give it to?” I asked, and she replied “9 or 10, usually.  Some are a little younger.” 

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We were not willing to let L’s expectations control Maya’s opportunities, and fortunately, Maya’s teacher agreed. She kept her expectations high (and we hoisted the bar up a giant notch when we came into school with a new, huge AAC app, set the iPad on the table, and said “Yeah, we’re sure she can do this.”) . . . and because of this, we laid resources in front of Maya and let her try it all.  She had opportunities, particularly the opportunity to be pushed and supported into a large AAC system, that the majority of 3 year olds simply do not have (although I’d like to change that).   

Opportunity drives achievement

L, the assistive tech evaluator who determined that Maya should only use a simple device, had a plan for Maya. She explained that we shouldn’t overwhelm her with a system that would be too big, or too complicated . . . it would only lead to frustration for Maya, who then might reject the system and cease trying to communicate with it at all. We should start small. Maya would have a device that gave her access to 32 words at a time, a number that was small and manageable. Because the teacher could create 8 sets of 32 words, she could have a set for art, a set for lunch, etc. It might take time, but over the next year Maya would learn how to access the words, possibly even achieving some success with creating simple phrases and sentences.

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We downloaded the big, full AAC app, and we had a plan for Maya. We would present words slowly, but (because of the very smart design of the app) she would always be able to touch a button that made every single word available to her. We would model as much as we could. We wouldn’t force anything, but we would become AAC users ourselves, immersing her in it, and we would leave the door open for her to follow us through (and maybe we would nudge her along a bit, too).  Grammar, mistakes, times when she pushed the talker away, a favorite word pressed ad nauseam . . . none of it mattered if she would be able to say things that were on her mind. We so wanted to know what was on her mind. If we were painting, we wanted her to be able to say “grandpa” if she wanted to paint grandpa---not to be limited to a predetermined set of 32-words-that-someone-else-thinks-Maya-might-want-to-say-when-she’s-painting. We wanted her to have all of the words, to be able to choose her words at any moment, the same way that any other 3/4/5 year old speaking child can . . . and she did.

She told us about the weather, she counted, she spelled her name. She told us her ideas about what we should do on a given afternoon, what we should eat for dinner, what song we should sing. She told us that she loved us, and who she played with at school, and that her ear hurt (it was an ear infection), and who she wanted to Skype with.  She showed creativity, the ability to analyze information, the ability to make connections, (kind of impressive) memory, wittiness, kindness, and sarcasm.  She could communicate, truly.

Achievement drives perception

In the fall, Maya will start kindergarten and leave the security of preschool behind. To find the classroom that will be the best possible fit for her next year (the most perceptive leading to the highest expectations and granting the greatest opportunities, so to speak) we have been assessed, evaluated, and interviewed within an inch of our lives.  In recent months we were asked (by the DOE) to tour certain schools, and several requested that I bring Maya for the tour/interview.  We toured the facilities, heard about class sizes, visited potential classrooms (with Maya wandering right into the middle of the action, of course).  The school personnel had looked over her case, watched Maya boldly step into the classrooms, and smiled in a satisfied way that said yes-this-will-be-a-good-fit.  Until we returned to their offices, and I put the talker in front of Maya, then ignored her and spoke with the other adults. It only takes a minute or two of ignoring before she starts speaking up (although if you try to interrogate her she can hold onto a stubborn silence for.ev.er.) . As she tapped out a full sentence to request a snack or a drink, I could see a flicker---“oh, wait a second . . . “---and as I gently led her into more creative territory (what do you want to do today, who should go with us, what do you think we’ll see there, hold on---what day is tomorrow, again?) the flicker grew, and they were wide-eyed, surprised by this quiet girl who had tricked them.  And maybe (hopefully), surprised by their misassessment.

And, in a mere minute, a huge perception shift. In the following minutes, the comments that Maya “was too advanced” and “wouldn’t be a good cognitive fit here” and “clearly needs to be somewhere where she will be challenged” and “is full of potential, wow!”

In the space of only three minutes Maya’s achievement with AAC reshaped their perception of her as a learner which raised their expectations for her academic potential and offered her the opportunity to not be relegated to an ill-fitting, limiting classroom . . .

In a month-ish, she’ll start in a new school, with a new staff and new classmates and not a single person that she knows. And so the cycle starts again . . . and I’ll be sending over a new packet . . . because I know that my girl isn’t easy to read, and I’m going to try to shape their perception, to show them Maya that I see---manipulative, sassy, stubborn, clever, and full of potential.  

Undiagnosed Children's Day is tomorrow!

Tomorrow is Undiagnosed Children's Day!

This may lead to some questions, such as, what is Undiagnosed Children's Day, and why are you only telling us about it a few short hours before the big event?  I'll give you the long answer to the first one, but for the second let's just say that there was a bit of date confusion and I thought I had an extra week to get my act in gear (oops). 

What is Undiagnosed Children's Day?
Undiagnosed Children's Day is a day where you get to support (and, if you're feeling motivated, raise awareness) of the kids that you know (like Maya) who are undiagnosed.  It's an awareness day that was invented last year by another blogger, Heather of Team Aidan, whose son has an undiagnosed developmental disability. 

Why did Heather invent an awareness day?
A year ago, Heather wrote the post that kicked off Undiagnosed Children's Day, and she started it like this:

When people ask me for Aidan’s diagnosis, I say he has development delays and hypotonia (low muscle tone.) Those are words that get you nowhere. When he turned 6, he lost some services because that diagnosis was no longer valid. Happy 6th Birthday, poof, your disability is gone. No wait, the disability is still there but your services aren’t. In school he is labeled as multi-handicapped. That only works for school. Many agencies have different qualifying criteria. Don’t try moving to a different state because they may require a different name.

Yeah.  Getting older without a diagnosis is really difficult (she goes on to qualify, by the way, that having a diagnosis comes with its own pros and cons---we're certainly not saying that having a diagnosis is a cakewalk, just that it sure can be handy when you need it).  It's something that would keep me up at night, if I allowed myself to think about it for more than two minutes at a time.

There are other challenging things about not having a diagnosis, too.  One that gets under my skin is the skepticism that can come from inquiring minds.  Maybe someone that has a child with disability and is asking about Maya, or maybe it's from someone within the education/services world, or maybe we're visiting a new doctor . . . and when I say "She has a undiagnosed genetic syndrome" there's a flash, a little lightening bolt that flits through many of their eyes.  Some hide it better, while some fully commit with a raised eyebrow, but there's often a flicker of Oh, come on, don't beat around the bush, just tell me or Haven't you even taken her to get checked out or If it's 'undiagnosed' then how do you know it's genetic or whatever.   

You know what's especially biting about those skeptical folks?

I think I could have been one of them.

I'm a science girl. (I was a zoology major, a science teacher, an EMT, I have a masters in teaching science, and my mom's a nurse.  I was always kind of biology-nerdy, even before Maya.)  I like data and tests.  Had someone told me that their child was undiagnosed I'm fairly sure that I would have been very curious and asked a lot of questions (hopefully politely, but who knows).  My level of skepticism probably would have depended on what I thought of the parents and their capability to find the right doctors and push for tests and advocate and whatever.  My outer opinion would have been sympathetic. My inner voice would wonder when they would be able to get the diagnosis-------when, not if, because this is 2012 after all, and we're sequencing DNA and all that jazz and how could there just not be a test to run that would bring the answer in?

This is why a little awareness would be helpful.  Because I would have been skeptical of someone in my own position.  Because despite being a graduate-degree-educated-big-city-science-nerd, I had never been aware of the limitations of medicine and science in their ability to diagnosis children who are struggling with nameless syndromes or disorders. 

What does one do to participate in Undiagnosed Children's Day?
Wear blue!

That's it.

Ok, that's not totally it.  First, wear blue.  Then, if you can, share something about Undiagnosed Children's Day---on your Facebook, via email, with a tweet, dropped into a phone conversation, however you want.   You can share this post from Heather, or her original Undiagnosed Children's Day post, or share this post that you're reading right now.  Share a picture of yourself rocking out in blue, and let people know why you're wearing it.

And if you're wearing blue, share it with us, too!  Because if there's one thing that's tough about the undiagnosed world, it's the going-solo-ness of it all.  Heather wrote:

The whole “undiagnosed developmental disability” thing happened slowly, much like a gentle slope you didn’t realize you were on until you hit the bottom. The bottom: left behind by state workers who need to check a box, left behind by the moms who said, “but you must know what caused it,” left behind by the support groups who rally around kids with CP or Down Syndrome (ok, to be fair, I’ve met awesome moms who have asked me to come to their groups anyway), left behind by foundations that research specific diseases. Alone.

If I had had Maya 20 years ago, pre-internet, I would have been lost.  If not for the ability to seek out bloggers, therapists, AAC specialists, and other parents (and then badger them via email, FB, and twitter until they answer my questions and beg me to leave them alone) I'm really not sure what I would have done.  I push into other online communities and try to glean what might work for us, but there is a loneliness that comes with not having a group that totally gets it.  Even the undiagnosed community is so hugely variable that it's tough to find a great fit.  We're so lucky to have wonderful families, supportive friends, and online allies . . . but there are many other undiagnosed families who don't have that, who just wish more people understood.  And tomorrow, when test results come in to doctor's offices around the world and more parents hear "The results were normal.  Let's just wait and see, and check back in 6 months." our ranks will grow.

So tomorrow, wear blue.  And share Undiagnosed Children's Day, and the fact that even with today's advances in medicine, technology, and science, there are large numbers of families who are still looking for an answer.

 

The muss & fuss of independence

Two weeks ago I had a little meeting with Maya’s preschool teacher.  I went in just to warn her about a possible issue with an upcoming field trip . . . little did I know that she had some things to discuss with me, too.  If I could sum up her points in one sentence, it would be this:  Maya is smart and capable, but stubborn and kind of a pain in the butt.

(Not that she would ever say that, of course.  I’ve taken license of parental rephrasing.)

Here are some examples:  Maya is capable of walking, and climbing stairs with support, but often refuses.  If it’s time for the class to transition to a different room and Maya doesn’t want to walk, she will simply sit on the floor like a stubborn puppy (with a sly smile).  She is capable of taking her coat off (alone) and putting it on (with assistance), but if she doesn’t feel like complying it takes some serious wrestling maneuvers (which she will either giggle or scream throughout, mood depending).  She can feed herself with a fork (I’ve seen her do an entire waffle without help) or her fingers, but it’s rare that she eats a meal independently, because she’s not really motivated.  If I stab the pieces and hand her the fork, maybe, but if I just leave the plate and fork on her tray she’ll play happily and ignore it until I start feeding her.

The teacher thinks that Maya would be able to keep up with a larger class next year, academically speaking. “She’s so smart” she tells me, and I smile on the outside and on the inside cheer I know, right?! That’s what I’ve thought, too!  But even with a one-to-one, she wouldn’t be able to swing it in a larger class right now because “her behavioral issues are holding her back.”

Hee hee.

This all kind of cracked me up.  Clever, but stubborn and manipulative?  Well, I can relate to that, and get behind it, too.  I guess part of me was secretly (or not so secretly) pleased . . . I’ll take smart and naughty over the alternative, I think.

But another part of me was disappointed with myself.  While talking with the teacher about incentives and sticker charts and self-dressing and feeding and promoting independence a little voice started to whisper to me, It's you--you’re doing it. You’re underestimating her. You’re not pushing her.  You’re making things too easy.

It’s true.  It’s unintentional, but it’s true.

I guess I’ve been so focused on communication stuff that independence has been way on the back burner.  I like her to walk instead of getting carried, but if she refuses to move I pick her up.  Usually we’re rushing somewhere and I don’t have time for fighting.  If she’s not eating by herself, I pop a piece of something into her mouth, lest dinner take an hour and dissolve into a tantrum.  Dressing her, changing her, putting on her coat---these are just things that I’ve always done, quickly and efficiently.  How did I miss the fact that it was time to start turning over the reins?

Since I scraped myself off the floor after my stay in the airport, I’ve been confident that Maya will do whatever she wants to.  I was certain she would walk, and I’m sure that she will speak, too.  I’ve spent a lot of energy thinking about and working towards the big goals, and somehow overlooked when it would be time to teach her the small things. 

I think this must be a normal parenting stage—realizing that your child is able to do some of the stuff that you’ve been doing for them, pushing them to pull up their own pants or wash their own hands or whatever.  But the special needs component adds a layer of complexity, I think. First, because (in my mind, at least) I fiercely want Maya to be independent in as many age appropriate ways as possible, to eliminate as many differences between her and her peers as I can.  And secondly, because she will likely need more practice to master these skills.  Stubborn streak aside, her fine and gross motor issues will make some of these tasks more complicated for her than for other 3-4 year olds.  I have to give her the opportunities to practice and practice and practice.

Since this meeting we’ve had some changes, big and small.  She moved into the big girl bed (which was planned pre-meeting, but the timing was fortuitous).  She’s putting her coat on (with help) and taking it off.  She’s learning to climb into her stroller, and I’m encouraging her to climb onto the couch with me (Encouraging to climb? Madness!). She pulls her pants up and down (mostly) and we’re doing more verbal prompts to eat before offering assistance.  I’m trying to look at her with fresh eyes instead of seeing the little girl that I’m used to doing so much for.

And you know what?  It’s changing her.  She is so proud of herself for being a big girl, trying new things on her own.  The smile when she carries her coat over to her chair and puts it down by herelf is positively gleeful.  There is frustration, but not nearly as much as I had anticipated.

We’re supposed to be working on drinking from a cup and it hasn’t been happening much, mostly because she enjoys dumping cups of liquid more than trying to drink them.  But we’re going to try again today because in the end, the mess will have been worth it.*

*Someone remind me of this later this week when I’m complaining about cleaning up spilled milk, again.

Stand Up.

Edited to add(1/14): I've received several emails from people who are friends of CHOP, asserting that this is not the full story.  I agree that the process to determine candidacy for a transplant is probably quite complex, and I am hopeful that the IQ of this girl was not the sole cause for her denial.  However, if "mental retardation" played any part in her denial, then that is despicable.  I'm happy to do my small part to spread the story of another special needs parent who is begging to have her story spread.  But I'm not really interested in engaging in rounds of debate about it-because I simply don't know any more than what is here.  I'm not leading a crusade, I'm just sharing a story that a mom asked for people to share. 

A story popped onto my Facebook feed this morning, and my friend included a tag line about being angry that people judge the lives of people with disabilities as "less worthy" or "having a lower quality of life" than others. 

I didn't open the link.

Sometimes . . . well, sometimes I need to take breaks from all-things-disability. 

An hour later, it popped up again.  And then again.  Finally, I opened it. 

You need to hear this story. 

I think it's best if you go right to the source.

In case you're not in a link-clicking mood, here's the summary: A little girl (Edited: She's 2, nearly 3 years old. Younger than Maya. Her picture is on that link) has a genetic condition.  She will need a kidney transplant in the next 6-12 mos (this is expected, and her levels have been monitored for the past 3 years).  At her appointment at CHOP (Children's Hospital of Philadelphia, known for being an excellent children's hospital) on Tuesday, her parents were told that she will not be eligible for a transplant because she is mentally retarded.

She will not be eligible to get a kidney transplant, which is necessary to keep her alive, because she is mentally retarded.

The end.

When the family (in a rage) said Well, whatever, we'll just find a kidney in the family to donate to her the doctor responded with We will not do her surgery here.  She in ineligible because of her quality of life because of her mental delays.

If you are somewhat horrified and somewhat skeptical, thinking Come now, there must be more to it than that . . . no doctor gets to look at a little girl and say "Oh, you are delayed and you're life isn't worth living, so I will not give you a kidney and you will die" . . . well, you are wrong.  That's the story.

Are you ok with that?

Because you can be damn sure I'm not ok with that.

Stand up, people.  It's time to be counted.  If this were Maya, I know that you would help me rally the troops (and perhaps a firing squad) . . . so help Amelia's family.  I can't imagine the state of her parents.  Let them see their rage against such a gross misjustice spread and affect change.

 Take 45 seconds and do these 3 things. Please.

1. Go to this link and sign this petition, which demands that CHOP grant the transplant (and will hopefully cause a policy change at the hospital):

2. Write on CHOP's Facebook wall to express your disagreement/disgust/other adjectives.

3. Share the story.  Share Amelia's mom's link, or the link to this post, or the link to the petition.  Put it on Facebook, tweet it, email it to friends.


We cannot be ok with this.  And if you're not ok with this, you have to make your voice heard.

We've got some medical news (Part 1)

I’ve been keeping a secret. 

Back in July I received a Facebook message from a blog reader that set us on an interesting path, one that has the potential to lead to a diagnosis for Maya.   I’ve been keeping it under wraps over the past few months, because we had a lot of learning, research, records gathering, conference calls, and appointments to get through before we could even decide whether we were a good fit for this project, and whether we were going to proceed.

Now we’re ready to proceed.  So it’s time to explain it all.

As many of you know, we’ve spent a significant amount of time over the past few years (since January 2009, to be precise) searching for the source of Maya’s delays/challenges/ uniqueness/abnormalities.   The doctors all agree, “something genetic” is at play here, but no one can put their finger on to what that something is.  It’s been a long, tumultuous, exhausting road.  She’s been through a variety of diagnostic tests and procedures, including: karyotype (normal), microarray (normal), FISH (normal), UBE3A sequencing (normal), brain MRI (normal), swallow study (normalish), ABRs—that’s plural (normal, then abnormal), behavioral hearing analyses-plural (normalish, normalish, normalish, normalish), EKGs-plural (mostly normal), echocardiograms-plural (normal).   And those are just the medical tests that I can remember.  Add in the countless appointments, the surgeries, the sheer number of doctors (we send holiday cards to all of them, and they take up a whole section of my address book) and, well, it’s a little overwhelming.

Maya is smart and funny.  She is learning and growing and making steady progress, she loves school, she’s walking and making measurable gains towards talking, and overall, she’s a little delight.  So, why keep searching for a diagnosis?  Why bother?  Why not just accept that things are unknown and move on?

Good question.

Part of me that has fallen in love with being undiagnosed.  I love that doctors can’t make assumptions about Maya’s skills or limitations, because no one can presume to know what they are.  No one can think “Well, the other kids that I’ve seen with this syndrome don’t talk, so she probably won’t either” or “Kids with this syndrome generally need to stay in specialized schools” or whatever.  There’s a smugness that comes with walking into a new doctor’s office and knowing that they will be forced to listen to me just a little bit more closely, because thus far I’m the authority on the Syndrome of Maya.  But there’s a flipside, too.

The flipside is that I feel a little ridiculous when I’m asked for her diagnosis and have to say “unknown genetic syndrome.”  And you’d be surprised how often I have to say it.  School paperwork, insurance phone calls, doctor’s appointments, signing up for special needs events, introducing myself to other special needs parents.  At the playground.  In the diner.  One time a older woman was so taken aback after I said “unknown genetic syndrome” that she actually paused and then sputtered “Oh . . . well, um, have you taken her . . . I mean . . . which doctors have you taken her to?”  (Like I was going to run off our list of doctors to a stranger at the diner.)  People just don’t understand how, in New York City, with doctors and hospitals generously sprinkled everywhere, a child can be diagnosis-less.  A mystery.

And being undiagnosed comes with complications and issues more significant that just my feelings of sheepishness.  When I file claims with our insurance company, the generally meaningless diagnosis of “global developmental delays” doesn’t get us very far.  GDD can describe a child with a small vocabulary or with no words, a child who was a late walker or who was a very late walker or who still doesn’t walk.  It’s too broad, too nondescriptive.  To the insurance company, it’s kind of useless—a catch all for kids who don’t seem to have real medical issues.  It doesn’t paint our picture.  Insurance denials arrive in the mail by the bucketful. 

On a similar bureaucratic note, when Maya turns five we will enter a new chapter in the school system (right now we’re in the preschool system, but turning five transitions us to the big league).  By the time she turns five, we will struggle to find the best school placement for her, and fight to ensure that she is granted the therapies and services that will assist her in school.  Can we get these services without a clear, medical diagnosis?  Yes, in theory.  Is it more difficult?  Oh yes.  Yes, it is.

Finally, but most importantly, there’s the most compelling reason to find a diagnosis.  Undiagnosed life . . . well, it can be dangerous.  Some syndromes come with complications that develop over time . . . seizures that don’t start until puberty, degenerative hearing or vision loss, chemical imbalances.  It would be helpful to know if that stuff is on the horizon.  Also, there are syndromes that are now treated with preventative medications, vitamin therapies, and all sorts of ways to be proactive . . . if you know the diagnosis.  If you know what you’re up against. 

And so, we kept searching, periodically.  Taking breaks, but returning to Google and online forums and genetic websites.  Talking to other families, talking to doctors, keeping an eye out.

That brings us to this summer.


To be continued . . . the second half will come tomorrow. 
Added: I'm not trying to make a cliffhanger here, the story is just too long for one post. 


 

We Are More Thankful Than You Are

(By "we" I mean parents of kids with special needs.  By "you" I mean parents of normal/ average/ typical kids.)

Ok, so thankfulness probably isn't supposed to be a competition.  And before parents of typical kids stop reading---or start sending hate mail---let me quickly say that for a few months I was a parent of a typical kid, and I sure was grateful.  I celebrated her first smile (right on track at 6 weeks), gleefully welcomed her first laughs (which we even have on video) and appreciated the heck out of my lovely, growing, happy, healthy baby girl.  Had some parent of a kid with special needs tried to tell me "We're more thankful than you are" I would have bristled like a porcupine, shot some eye daggers, and thought passive aggressive things.

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down.  In taking something for granted, one accepts something as a given or true, often without showing appreciation.  While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.

• Will she get good grades?  Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history.  And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway). 
• Will he play sports?   Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane. 
• Will he be teased?  You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."
• Will she get married?  Of course she'll have relationships and date and all that jazz.
• Will he go to a good college?  Will he stay on the path to college?  Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.
• Will she make good friends or fall in with the wrong crowd?  Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

Parents of kids with special needs lose some of those things-taken-for-granted (some families may lose all of them, others may only lose select ones---like if their kid can walk and run just fine but may not interact with other kids).  Realizing that nothing is a given for your kid . . . not even the simple ability to someday say, "Hey Mom, what's for dinner?", well, it makes your heart implode. 

But then . . . over time . . . progress happens. 

When a new skill emerges you are thankful----and then you see that what you thought was truly "thankfulness" before was just a shadow of the real thing.  Like the way you think you've had good apples, but then you have one fresh from the tree and are like "Holy crap!  That's an apple!" or how you thought dial-up internet was perfectly great and then you got a modem and were like "Whoa---this is a whole different world!"

This is a whole different world.

Maya has been walking for nine months now, and to this day there has not been a single time that I've watched her walk/run down a hallway without think "I can't believe she's really doing it."  A week ago she started eating waffles by herself (she holds the fork in one hand and feeds herself with the other hand, but whatever) and it was the first time in 3.5 years that she's eaten a full meal by herself.  I didn't have to sit and feed her.  It was amazing. 

Walking down the hallway?  Eating a waffle?  These would, without a doubt, be things that my former self would have taken for granted from my typical child.   But I notice them, I celebrate them, I am thankful.

I am so thankful.

There are other things---stepping-stone-skills, I think---that are totally life altering for us.  When I first realized that Maya was learning to recognize letters, my entire world shifted.  If I were a typical parent, I might have thought:  Awesome---what a smart girl!  She's already learning letters.  Maybe she'll be an early reader, we could read stories together, etc

But as a special needs mom, seeing her recognize those first letters sent up a giant, shining, exploding firework-of-a-thought:  She will be able to read someday.  And then, not far behind:  If she can read, someday she will type . . . so even if she never talks, she will type and people will understand her. 

What a typical parent would mark as a stepping stone on the given-road-of-progress, I saw as a game changer. 

That difference brings with it a more profound level of thankfulness.  It just does.

2 years ago today, Maya had her brain MRI.  2 years ago tonight, we found out that her brain was normal.  2 years ago tomorrow, at the thanksgiving table, we were thankful for her normal brain . . . that's a profound level of thankfulness.

Yesterday we went to a "Thanksgiving Feast" at Maya's preschool.  The parents all came and brought food and sat with the kids and celebrated . . . and I noticed one of the moms excitedly chatting with the teachers and aides and watching something on the teacher's cell phone.  It was a video, taken by the teacher.  Earlier in the day, her son had taken his first unassisted steps.  Ever.  Her little guy has been kicking butt with his walker for a few months now, but yesterday he let it go and took a few steps.  And while we were there, he did it again, with both of his parents excitedly looking on.  He's almost 4 years old.

And I watched him take steps, and I watched his mom & dad watching him, for the first time, take independent steps and I thought about how lucky I was to get to watch that moment.  That moment that takes them from "I hope that someday he'll walk" to "He walked."  From hoping that someday he would be walker-free to seeing that there's a good chance.  From "Let's keep working towards independent steps" to "Let's work on more steps."

They are more grateful for those first steps than the parent of a typical child. That's just the way it is.

Happy Thanksgiving to everyone---near and far, old and young, typical and not-quite-as-typical.  For the parents of kids with special needs, I hope that you can look back over the past year and remember some of your own game-changing moments, big and small.  And for the parents of typical kids, I hope that you can look back at some of your stepping stone moments with fresh eyes and realize how much you have to be profoundly thankful for.
 

Just let me have the now.

My mind protects me from the wounds of time.  The past and the future are treacherous ground for the  psyche of the special needs parent.  My mind whispers, “don’t try to remember, that was so long ago” and “slow down, no need to think about that just yet”  . . . keeping me from looking too far into the unknown of the future, or from thinking back too far and hitting the naiveté of my past. 

Oh, the blissful naiveté of my past.

When I stop and remember, the memories have the clarity of home movies . . . I see my former self, this girl-who-I-no-longer-am, pregnant and happy and picking out names for her perfect baby, and I know that she will lose her carefree spark.  I see her become a typical mom of a typical baby.  She thinks about the future and smiles.  She gleefully says things like “By spring she’ll be walking! Can you imagine that?!”   But I know that in a matter of months, she will no longer just gaze at her child with love, but with the burden of reexamination, searching for “normal” and “abnormal.”  Now, she laughs and plays on the floor with her baby, but soon “playtime” will become “therapeutic playtime”, filled with objectives and practice.  Soon, she will cry at night.  And during naptime.  And when it’s quiet and she’s alone and starts to think. 

She will scrutinize and worry.  She will struggle to learn to speak the new languages of medical jargon and advocacy.   She will not be the same, and not in the gradual way that people mature over the years, but in the radical way of a sudden, post-traumatic shift. 

She is the woman that I was before.  Watching her is like watching a dog at the pound that wags his tail and yips excitedly all the way to the doggie gas chamber.  It’s heartbreaking.


Don’t try to remember, that was so long ago.


The future is equally emotionally hazardous.  Advancing towards the future is driving through a thick fog in the middle of the night.  I won’t be able to see where our road is leading until the sun rises, and there’s simply no way to make it rise any faster.  I drive slowly, rolling through the fog and listening to music and try not to think about whether I’m heading towards a cave or a beach.  Honestly, I don’t even want to know where this road leads.   If the final destination turns out to be a beach, I’ll celebrate when I feel the sand between my toes.  I will think back over the years, about my (now unfounded) fears of the future, and I will sit in the sun and bask in the sweet relief of ending up at the beach.

And if my destination is a cave, well, I don’t need to know that yet.  From far away, a cave is dark and grey, a dank place that might house bears or other monsters.   Driving through a dark, foggy night towards a cave is the stuff of nightmares. 

But standing in front of a cave when the sun rises?  Well, there’s enough magic there to show you that caves are misunderstood.  With tide pools and rock formations and echoes, a cave reveals itself as something surprisingly beautiful, entrancing even, but misunderstood by the masses.  We’re already well-versed in beautiful, entrancing & misunderstood.

If I need to, someday, I will learn about the beauty of caves . . . and I’ll share them with anyone who will listen.   But for now, I choose not to look ahead.  I have no way of knowing where our path will lead, and I don’t want to guess.  I don’t want to think about our destination.


Slow down, no need to think about that just yet.


I’m living for the now.  Now is the delight of a normal day at the zoo.  Laughter and love, hugs and finger paint.  Now is a new favorite animal, an inside joke between my girl and her Daddy, sticky, chubby ice cream coated fingers.  Now brings the joy of new successes, the shrieks of “you did it!” the eyes that fill with tears when I see progress right in front of me.  Now is proud---the pride of any parent who loves their child and watches them gain independence, baby step by baby step.   

Now is savoring this exact age and stage and place and time.   Right-at-this-moment-now is unburdened.


Just give me the now, please.  Just let me have the now.
 

How we talk with our (mostly) nonverbal girl

This is an unedited, not-at-all-set-up photo of what my coffee table looked like this morning. 

That's why there hasn't been a post in a few days . . . I'm nearly totally consumed with Project Communication.  (And the little part of me that wasn't consumed with communicating was actually doing a bit of consulting work, so no free time at all.)  So, it's fitting that I'm here writing another communication-centric post.

Last week I was talking on the phone to a friend, retelling events from the day.  I mentioned Maya's Word Book, and said something like " . . .and then all day she kept saying "library! library!"  My friend replied "Oh my gosh, that's so amazing!!!", which left me puzzled.  It was, after all, more amusing than amazing. Then I realized that she thought Maya was literally saying "library".  I explained that I meant she was "saying" it with the picture card, and then I thought a lot about how Maya "talks" to us.

If you have a child that talks, you probably take a lot of communication stuff for granted.  For us, communication is something we're always working on.  I'm envious of a mom who can call "What do you want for lunch?" over her shoulder and listens for her child to shout an answer from the other room.  For us, talking is deliberate, requiring proximity and props.  Thankfully, most of the time it's pretty easy to understand Maya--she knows what she wants, what cracks her up, and what she likes, and she'll keep trying to "tell" you until you guess correctly (or she gets frustrated and cries,  which is the the saddest part about a kid who can't talk).

To that end, here are some of the ways that we communicate with our (mostly) nonverbal girl.  (Did you see on Facebook that her vocabulary has doubled?  Now she's got "bye" "done" "mama" and "dada"!)  A lot of it is common sensical, but may illuminate things a little bit for readers with "typical" kids who wonder how parents communicate with nonverbal kids.

Note: Maya's receptive language is, without a doubt, one of her biggest strengths.  Because she's able to understand everything with say, I do not need to sign or present picture cards for her to understand what I'm saying.  Also, she has high communicative intent (she wants to tell us what's on her mind), which is also very helpful as we work together to help her express her thoughts.

1. The most basic, oh-so-simple stuff 

• First of all, we ask a lot of yes or no questions.  She can nod or shake her head, and make small yes ("eh") and no ("nnn") sounds. 
• We present her with choices (foods, for example) and she can pick one.
• We ask her questions and show her how to show us her answer Ex. "Maya, do you want to play in the living room (pointing towards living room) or your bedroom (pointing towards bedroom)?"  Then, she'll point to show us.
• We still use signing.  The problem with signing is that we understand her signs, but they are kind of garbled . . . which is why we made the MSL (Maya Sign Language) translation video for her teachers.
• We understand her sounds.   "mmm" means, like, 17 different things, depending on context.  Sometimes we have to guess a few times, but she's (mostly) patient.

2. Low tech stuff

• Paper & pencil (or wipe board & dry erase marker):  This is great for choices on-the-fly, and works on word recognition as well.  Maya isn't currently reading, but if I tell her the words that I've written down, she will remember and choose.  (It's tricky to explain, see the video below)
• Hands: Even lower tech the paper & pencil, I use this when I want her to make a choice and I don't have any pictures or paper with me.  Check this out in the video, as well:

• Picture cards (first made with photos, now with BoardMaker symbols) are really helpful.  When presented with a large field of choices, Maya will work to search for something that she wants, or something that she wants to say, and will give it to us.  We started with just a few cards to make choices with, and now are moving our way up to a full communication book (which explains that picture of my coffee table.  I've been staying up late to make more and more words for her). 

3, High tech stuff

• iPad & Proloquo2Go:  As mentioned a few months ago, Maya has an iPad and an app called Proloquo2Go.  P2G is great, but the iPad is cumbersome.  To truly use P2G effectively, Maya will need to learn to navigate through folders with the touchscreen, tapping and sliding her finger to do so.  Right now, those motor skills are challenging and distracting enough to discourage its use (although we do have a stylus that sometimes helps with tapping buttons).  This week Maya will start using the iPad at school during mealtimes only (so she won't have to navigate through screens) and use the Word Book the rest of the time.  Hopefully she'll slowly adapt to the iPad and we'll use it more and more.  The biggest benefit is that it literally has a voice---she lights up when she hears it say what she's thinking :)
• Other devices:  We have submitted paperwork that will give Maya an assistive tech evaluation, so we can see if any other devices would be a good fit for her right now.

So, that about sums it up.  Even though she doesn't talk, she actually communicates very clearly (to us, anyway). 

It's very exciting to see her eagerness to communicate, and I'm anxious to see how far she's come in a few months.  Trying to launch the Word Book and iPad simultaneously is nearly drowning me (especially after 1.5 hrs at the Apple store yesterday, and then a 2.5 hour upgrade/redownload/restore process last night), but it will be good.  Maya will show us what works best, it's just a matter of being patient and determined and teaching her both systems, so that we can follow her lead.

In totally unrelated news, here is the cutest art project ever (she brought it home today):

Those jungle animals are made from her handprints!  This could not be cuter.

Introducing the Word Book! (Or, how to make your own communication book)

Recently, I've had communication on the brain.    The time has come to implement a system of communication that will let Maya "speak" more easily to those around her.  We've tried picture cards, picture boards, and the iPad, but nothing has really stuck.  All of the systems become cumbersome, or are used inconsistently.  Finally, it seems like we're making solid progress . . . Maya has been a virtual chatterbox this weekend, thanks to a communcation book that anyone make at home, with minimal supplies.

Last week I visited Maya's school twice.  Both times, I was focused on communication (and I also got to spy on a PT session, which was fun).  On Wednesday, I visited her teacher and speech therapist, taking photos of the communication boards that they have been using with her at school.  Here's a picture of a board that she uses while playing with dolls at school:

Pretty basic.  She points to things, the teacher will say them and encourage her to make the starting sounds of the words.

The problem that I had been having at home with the boards is that it's really hard to get the right words on the board.  The pressure of selecting the words was enough to make me come undone.  I mean, when I make a board I'm literally chosing every single thing that she can say.  Imagine if you sat down to play a game and were only allowed to use 20 words, which had all been predetermined by someone else.  I hated that my word choices would limit her.  But that changed on Thursday.

Thursday I returned to the school to attend a workshop on increasing communication at home.  The workshop was mostly useless, except for 1 key point.  Velcro.  At one point the presenter held up a little communication board that had velcro squares on it---and I had a memory flashback to seeing a communication book lined with velcro months ago, so that the board itself is dynamic.  This was what I needed---a board that could easily shift and move, with many words at her fingertips.  So I got to work. 

Note: I'm not inventing the idea of velcro and communication books---many commercial ones exist.  But you can make this at home, and it will be cheap and easy. When I googled how to make your own communication book I found nothing useful.  So this is what I did:

Step 1: Start with the basics.  I made my picture cards in BoardMaker (which makes life easier---but you don't need it.  You can do this with photographs or clipart, too) and put velcro on the back of the squares.  For the book, I'm using a 1" binder with velcro strips.  I figured that there are certain basic words that she would almost always need, so those remain on the cover of the binder:

Step 2: Make the word tiles and put them in the binder.  I'm not going to lie, making the tiles is a bit labor intensive, but it's the type of mindless work you can do while you watch TV.  The tiles are stored inside the binder on old pages from a photo album (they are more sturdy than sheets of paper).  They have velcro running across the page, like the cover. 

 We went to a hay ride/pumpkin patch on Sunday, which explains why we're talking about skeletons.

Step 3: Organize.  Clearly, the words above aren't organized.  I'm working on that now (or will be working on it after I finish this blog post).  I'm going to make pages for "art", "people", "food & drinks", etc.

I've also learned (in the past 3 days) that these littles tiles will get lost--everywhere.  Initially this wasn't a problem, but as the number of tiles increases I won't be able to figure out what words she's lost.  And losing a tile renders her incapable of saying that word.  So it's a big deal. 

To that end, I'm going to use a permanent marker to label the place under the tile, so that when the book comes home from school all jumbled up I can reorganize and see if any words need to be reprinted.

The space under the "Maya" tile is labeled.

Step 4: Using it.  Maya caught on right away, and seemed to grasp the magnitude of the system---I have words!  She had a massive breakdown when I had to take the binder to buckle her into the stroller, and loves to pick up the words and show them to me.  She quickly started pointing to 2-tile "sentences", which was great to see. 

Notes:
-Maya learns the cartoon pictures pretty easily.  If your child is a more concrete thinker, photo tiles might be better.
-I like this because she has all of the words!  She flipped through the pages today several times, to remind me that she went on a "pony ride" and tell me "Grandpa".  I don't know why she was thinking about Grandpa, but if she only had a "playground" board in front of her at that moment, she wouldn't have been able to share that thought with me at all.
-We're working towards the higher tech versions of this---the iPad and AAC devices.  But this is a solid start, for now.

Enough of my talking . . . let Maya show you how it's been working for us:



*I would greatly appreciate any and all tips, tricks, feedback, etc.  If you have ideas on how to use/improve the Word Book, please share them!

After the Airport: Reflections, and the Boats of Acceptance

A year ago I wrote Amsterdam International, about 6 months after I had left the airport myself. I was writing with enough emotional distance from my darkest point (a period of daily-tears-during-naptime, and racing-mind-while-lying-in-bed-at-night) to speak somewhat clearly about that rough transitional time, but while the memories were still fresh (and jagged) enough to hopefully do them some justice. I was attempting to say “This is the worst thing that I’ve ever gone through” and “If you hate life right now, don’t worry, you’re not alone” and “Someday, you will suddenly realize that you haven’t cried for a few days, and you will see that you’ve begun to (ever so slowly) crawl your way out”.   

I hoped that it would spread, and reach others who were going through their own dark times. And then I watched, amazed, as it did. A year ago I was awestruck as people (besides my mom) visited the blog, and in a matter of 3 days my daily page loads jumped from 67 to 421 to 892. I felt like I had contributed something, and at a time when I was feeling like I had lost some of my own identity (having left my career to manage therapies and appointments), that gave as much to me as any of my words gave to anyone else.

At the time, I was already grateful to be out of the airport, and I’ve spent a lot of the past year trying to spend more time enjoying the present, and less time thinking. (As it turns out, life is sometimes more fun with less thinking.) There didn’t seem to be much point to trying to envision what our future would be like in Holland, or worrying myself with particulars. I had already accepted that life would be different than the one that I had previously imagined, and I decided that while we would clearly have more struggles, we would also have more celebrations . . .and over the past year, we’ve had some great celebrations. First steps, first words, first bizarre adoration (hello, vulture), first glimpses into how smart and funny our girl is . . . we celebrate a new food with the gleeful smiles that some people reserve for opening presents on Christmas morning.

And I’ve enjoyed this about Holland-the joyful appreciation of minor things. I’ve come to welcome the slow pace of changes . . . by the time we got to walking, there wasn’t a little mom voice in my head lamenting, “Oh . . . my baby is growing up too fast! Slow down!” . . . there was just “Go! You can do it! This is amazing!” Progress has been made, and savored. In the airport, we were in a rush---a rush to fix things, a rush to change things, a rush to somehow alter the course of our unplanned reality-----but outside the airport, in acceptance, there is a peaceful happiness. In acceptance, things are . . . well, things are pretty good.

But I didn’t realize that this past year would teach me an unexpected thing about acceptance. There seem to be stages of acceptance, both as clear and as winding as the stages of grief had been.

Stay with me as I leave behind the airport analogy and switch to a harbor town. (I know, I know---Another analogy?! (eye roll) but it’s the best way I can think of to explain this.) 

The Boats of Acceptance

In this harbor town, the families with “typical” kids live on the land, and the families with “special/different/whatever term you’re cool with” kids live on the water. The families who are new to all-things-special-needs, who struggle to see which world they fit into, who still spend a lot of time in depressionangerdenialbargainingwailingpain . . . they sit on the beach. Not quite on land, but not ready to brave the water. And when they’re ready, they get to acceptance. And then they get their boat, to join those already in the water.

As best as I can figure, acceptance starts as a canoe. It’s tipsy, easy to capsize---but you’re so happy to be free from the limbo of the beach and enjoying the water that you don’t care. You paddle around thinking “This is working! I’m on a boat! I’m happy! This water isn’t so bad! “ But every so often you hear people playing on the shore and turn too quickly to see them----or you gaze too long at some kids playing in a soccer game close to the shore and you forget to row----and your boat wobbles and shakes and takes in a bit of water and you think that maybe you need to take a rest on the beach again. Just for a little while. 


It’s hard to learn to live on a boat.

It takes some time, but you become a champion rower. You can navigate turns, go superfast or smooth and slow, and the shore hardly distracts you anymore. You think to yourself “There are great things out here on the water. Those land people miss magical moments at sea.” You’re ready to drop your anchor and claim the water as your home.

So, you get a houseboat.

The houseboat of acceptance is strong and sturdy, built to last through the stinging winds and soaking hurricanes that you’re smart enough to expect in the years to come. And the best things about having a houseboat, docked securely at the pier, are the neighbors. You visit their boats and they visit yours, and you talk about the best places to buy rope and other boating things. So many people you might not have met on land, happy to help with ship repairs and barnacle scrubbings. You all have friends on land, but something is different among the camaraderie of people who live on the water---there’s a lot about boat living that the land folks just can’t fully understand. Life on the houseboat is good, you watch the tides come in and out and feel secure and proud . . . until you have to venture to land.

Going to land . . . well, it sometimes sucks.


You’re invited to a birthday party, or decide to take your kid to go visit the new museum, or whatever. You have high hopes. You’re ready to visit with old friends, to catch up. It only takes a few minutes to start noticing all the stuff that’s happened on land since you’ve been gone (they have flat screen tvs now? computers are wireless? what the hell is Twitter?) and suddenly all of the progress that you’ve made on the boat, the stories you were so ready to tell---they all seem very small. So small that you fearfully suspect the land people might put on too-big-smiles and too-cheerful-voices when they say “A new generator? That must be so fantastic!”

You may not be ready to be so close to land just yet.


But you want to shift from land to water, gliding from one to the other, at home on both, like the tides. The houseboat of acceptance, well, it may be home (temporarily? for a few years? forever?) but you watch the waves crash on the shore, stirring up the sand, and it makes you think. The water kicks up the sand and plays with the shells, lingers a bit, and then purposefully moves back out again. Maybe you could, too. Maybe you could join the land folks, move among them, and then return to the water . . . without the weight of misunderstanding/pity/envy/grief?

This is where a year has brought me. The houseboat is easy, the land is still sometimes hard (although there are easier days and harder ones) . . . and I’m ready to start rolling onto land with the waves (some days). I’m not sure how long it will take me to teach my body to switch from sea legs to land legs, and my visits might be short at first, but I’m going to go slowly. I’ve got a lifetime ahead of me to learn. As it turns out, the final, hardest to obtain, boat of acceptance is starting to reveal itself to me, and I don’t think it’s a boat at all.

I think it’s a surfboard.

   

   

He's just not that into us (doctor style)

Our genetics appointment last week came and went without much fanfare.  It was the same type of appointment that we’ve had a bunch of times now.

Part 1:  We meet with the assistant doctor (and med student/s, usually).  Update them on the past 6 months worth of appointments, discoveries, progress, etc.  Brief physical exam.  I present the new syndrome that I’m eyeing, my reasons for suspecting it, and the test that I think we should do.   (I feel like I'm pleading my case to a judge and resist the urge to take a bow when I'm through stating my case.)  Maya wanders around the room, investigating, searching for things to open/close/rip/crumple/make a mess of.

Part 2: The doctors tell me that she doesn’t seem like a typical kid with Xyz syndrome.  She’s too tall or too short, too nonverbal or making too much effort to become verbal, too high functioning (hey, that one was at least nice to hear), too stable on her feet (really?  Really?) or whatever.  I counter with “Yes, but I read that 10% of kids with xyz are able to walk independently, or that 80% don’t have cardiac involvement”, or whatever.

I resist the urge to throw up my hands and says “Obviously she’s not a typical kid with any syndrome . . . otherwise we would already have a diagnosis.  She’s an outlier.  Join me in thinking outside the box, won’t you?”

Part 3: “Ok, Mom, let me just go and consult with Dr. Hesincharge and we’ll come back to talk with you in a few minutes.”  Door closes, Maya wonders what’s going on here.  We play, and possibly probably shred the paper covering on the exam table.

Part 4: Dr. Hesincharge enters and reaffirms that Xyz probably isn’t a match, but we’ll run the test just to “cross our t’s and dot our i’s”.  I am happy that we’ll run the test, just to check.  Then he says  “So, after this test, there’s really not much that we can do here.” 

I deflate a little, and the deflation surprises me.  

Did he just break up with us? 

Dr. H:  It’s not you, it’s me.  There’s just nothing else that I can bring to the table here.

Me:  Uhhhh.   You’re, like, the doctor.  We need the doctor.  You’re supposed to diagnose things.  You can’t just quit on us.  Shouldn’t you be trying to piece clues together and read research papers and solve our mystery?

Dr. H:  All of the broad screening tests have been run.  I’ve done fancy test #1, fancy test #2 and even fancy test #3!  Then you wanted me to do test #4---even though I didn’t think she had Abc syndrome, so I did.  And now you want a test for Xyz, so I’ll order that too.  But there are, like, a LOT of other letters.  Clearly we can’t test for all of them.  And I could make you keep coming back once a year for physical exams, but I’ll be honest, I just have no clue.   So really, why keep up the charade that I’m actually providing any diagnostic care?

Me:  Ummmm.  This relationship really can’t be that draining for you.  Remember, I’m the one doing the legwork and the research?  But you have the fancy bloodwork forms, and the lab, and the hospital.  I can’t order the tests without you, man.  Don’t give up on us.  In a few months, I’ll start to wonder again.  And I’ll start to google.  And I’ll need your hospital lab and your bloodwork pad again.

Dr. H:  (Sigh).  Well, ok.  I guess if you need me, you have my email.

Me:  Thank you.  That wasn't so hard, was it?  And by the way, doctors shouldn't break up with patients.  Talk about literally adding insult to injury.  Sheesh.

That may be a dramatic elaboration, but the vibes in the room were similar.  “There’s really nothing else we can do here” is the doctoral equivalent of “It’s not me, it’s you”, I think.  (Although clearly, it’s not us, it’s him.) 

And I thought I really liked this doctor, too.  He seemed like a guy who would sink his teeth into the mystery of undiagnosed-ness and analyze all of the puzzle pieces with me, trying different things to see what fits.  But now I’m alone again.  Just me and the medical charts.

So I guess after the results of this test come back (3-4 weeks, but I’m not getting my hopes up) we’ll probably be done with Dr. Hesincharge.   We’ll settle into preschool routines and enjoy the fall and I might not even think about genetics for a while . . . but when I do, we’ll go back to the first geneticist that we saw (who was very nice, but also not very aggressive).  While he may have been a little more relaxed and slower to test, at least he hasn’t given up on us yet.