Front:
(you can click to enlarge)
Inside:
Happy Holidays from our family to yours :)
The picture was taken by us, in our living room---tomorrow, I'll put up a few behind-the-scene photos.
Monday, December 19, 2011
Wednesday, December 14, 2011
Holiday Card--2010!
This card was awesome.
Yes, it was real paint (nontoxic washable black finger paint). Yes, it was really on the dog. This was done on the floor of our living room. For some behind-the-scenes action, check out "the making of" post.
There will be a behind-the-scenes post this year as well, but it will be much smaller, since somehow the 2011 card was even more messy than the 2010 one. And that's the only hint you're getting.
The 2011 card will be posted on Monday, to allow time for some folks to get them via mail before it pops up here :)
Yes, it was real paint (nontoxic washable black finger paint). Yes, it was really on the dog. This was done on the floor of our living room. For some behind-the-scenes action, check out "the making of" post.
There will be a behind-the-scenes post this year as well, but it will be much smaller, since somehow the 2011 card was even more messy than the 2010 one. And that's the only hint you're getting.
The 2011 card will be posted on Monday, to allow time for some folks to get them via mail before it pops up here :)
Monday, December 12, 2011
You need to know about button batteries (again)
My blog stat tracker lets me see what people google to bring them to the blog (which can be fun to see). Most of the time the phrases are mundane . . . "nieder family blog," "uncommon sense maya," etc. Sometimes they are clear cut, like "how to make a word book" or confusingly hilarious, like "bad mall Santa".
Sometimes they scare me . . . "I think my child swallowed a button battery".
-goosebumps-
It's time to re-run the post about button batteries. The holidays are hear, filled with musical greeting cards, electronics, and toys---many of which have button batteries. Also, we've had a bunch of readers join the blog since I first ran this piece (back in July). I'm copying it below in its entirety. Please share this post----or, if you'd like to share the original (without this prologue) you can find it here. Make sure that everyone is aware of the danger that these batteries pose if they are ingested.
You need to know about button batteries
Please share this post. Injuries and deaths from button batteries are serious, on the rise, and preventable. Most people are completely unaware of the grave danger posed by a swallowed battery . . . until tragedy touched the life of a friend, I had no idea that batteries were so immediately hazardous. Every parent, babysitter, grandparent, etc who cares for small children needs to be aware of the serious danger posed by lithium button batteries.
If you live with small children, you likely have taken safety precautions to make your home a safer place for them. Knives are stored out of reach, hazardous household cleaners are secured, doors have locks and pools have fences. But within your home right now, you have at least one item (but probably several of them) that can cause grave injury, or death, and you are possibly unaware of how rapidly fatal it is.
The Button Battery
These are button batteries (lithium batteries). They are found in so many common items:
The Danger
Resources
National Capital Poison Center
A NY Times article about babies and button batteries
A comprehensive article that speaks with a doctor who published a review of button battery data from 1998-2008.
A video from ABC news that shows the batteries and hears from experts.
One mom's story: My son died after swallowing a button battery
Sometimes they scare me . . . "I think my child swallowed a button battery".
-goosebumps-
It's time to re-run the post about button batteries. The holidays are hear, filled with musical greeting cards, electronics, and toys---many of which have button batteries. Also, we've had a bunch of readers join the blog since I first ran this piece (back in July). I'm copying it below in its entirety. Please share this post----or, if you'd like to share the original (without this prologue) you can find it here. Make sure that everyone is aware of the danger that these batteries pose if they are ingested.
You need to know about button batteries
Please share this post. Injuries and deaths from button batteries are serious, on the rise, and preventable. Most people are completely unaware of the grave danger posed by a swallowed battery . . . until tragedy touched the life of a friend, I had no idea that batteries were so immediately hazardous. Every parent, babysitter, grandparent, etc who cares for small children needs to be aware of the serious danger posed by lithium button batteries.
If you live with small children, you likely have taken safety precautions to make your home a safer place for them. Knives are stored out of reach, hazardous household cleaners are secured, doors have locks and pools have fences. But within your home right now, you have at least one item (but probably several of them) that can cause grave injury, or death, and you are possibly unaware of how rapidly fatal it is.
The Button Battery
- toys
- books (the kind that make noises)
- small remote controls (for air conditioners, ipod docks, etc)
- watches
- hearing aids
- clocks
- musical greeting cards
- cameras
- keychains
- flashing shoes
- and more (see a more complete list here. Basically, if it's small and battery powered, there's a button battery in there.)
Parents already know that kids shouldn't play with batteries. But these button batteries are even more dangerous than the traditional batteries simply because they are smaller and easy to swallow (or stick in an ear or nose). And because they come in so many items, the saftety regulations are somewhat vague. A button battery in a toddler book, for example, is highly regulated and must be secured in a compartment that requires a screwdriver to open. Pretty safe.
But what about those singing greeting cards?
Kids love those cards . . . but the only thing between the child and the battery is a layer of paper. If they wander away with one and rip it apart, the battery is sitting right there. (Some cards do have a battery lock, but many don't).
And small remotes? I know from experience (because I'm constantly dropping things) that many of these pop right open when they hit the floor, exposing the (shiny, interesting looking) battery inside.
But what about those singing greeting cards?
Kids love those cards . . . but the only thing between the child and the battery is a layer of paper. If they wander away with one and rip it apart, the battery is sitting right there. (Some cards do have a battery lock, but many don't).
And small remotes? I know from experience (because I'm constantly dropping things) that many of these pop right open when they hit the floor, exposing the (shiny, interesting looking) battery inside.
The Danger
(This is the part where some people shudder and think: "I don't even want to know any more about battery dangers because now I'm going to be paranoid about batteries and have nightmares." You know what? Suck it up. The parents of the 12 kids who died due to button batteries since 2004 would probably give anything if they could reverse time and become more aware of the serious danger caused by them.)
Kids swallow these batteries.
And then very, very bad things happen.
When a battery is swallowed, it generates a small electric current, which burns the tissue next to it. (An experiment showed that a button battery will burn straight through deli meat after only 2 hours.) In some cases, a swallowed battery is small enough that it can pass through the system (with careful medical monitoring). In others, the battery becomes lodged (often in the esophagus).
As soon as the battery is lodged against tissue, the electrical current starts. Tissues are seriously damaged. Resulting injuries have required surgeries, feeding tubes, respiratory tubes, and home nursing care.
And if the battery can burn through deli meat, imagine what happens if it reaches a blood vessel.
There are several possible routes of injury, and a few ways that a swallowed battery leads to death. (More information about mechanisms of injury is here.)
The Bottom Line
Kids swallow these batteries.
And then very, very bad things happen.
When a battery is swallowed, it generates a small electric current, which burns the tissue next to it. (An experiment showed that a button battery will burn straight through deli meat after only 2 hours.) In some cases, a swallowed battery is small enough that it can pass through the system (with careful medical monitoring). In others, the battery becomes lodged (often in the esophagus).
As soon as the battery is lodged against tissue, the electrical current starts. Tissues are seriously damaged. Resulting injuries have required surgeries, feeding tubes, respiratory tubes, and home nursing care.
And if the battery can burn through deli meat, imagine what happens if it reaches a blood vessel.
There are several possible routes of injury, and a few ways that a swallowed battery leads to death. (More information about mechanisms of injury is here.)
The Bottom Line
Batteries are not (by far) the most commonly swallowed household item (they rank at about 1% of the total swallowed items, with 3,500 cases reported to poison control each year). "But while swallowing batteries has occurred for years, the development of larger, stronger lithium cell batteries has increased the risk of severe complications." (from the NY Times)
Few other ingested items will cause potentially fatal damage so quickly. And because parents often are not aware at just how serious battery ingestion is, these batteries may fall into the hands of children, and then get accidentally ingested, without their knowledge.
What Parents Need to Know
1. Button batteries can cause serious injury and death if swallowed.
2. Button batteries are in your home and may be more easily accessible to your child than you think.
3. If your child is playing with a product (key chain, small remote, greeting card, etc) that contains a button battery, they must be supervised.
4. If a child is playing with an item and you are unsure if the battery has fallen out, or you can't find the battery (a remote broke into pieces that scattered, a musical card was torn up, etc) than you need an xray. Head directly to the emergency room and tell them "My child may have swallowed a battery." This is a do-not-sit-in-the-waiting-room type of situation.
5. If you suspect that a battery may have been swallowed, you should call the battery ingestion hotline: 202-625-3333. Likely they will tell you the above. They will also likely tell you that panic is not necessary, but swift action is.
6. Even dead batteries can hold enough charge to kill a child. So dispose of dead batteries appropriately and immediately.
One More Thing
Share this blog post. Or share one of the articles linked below. Or share the National Capital Poison Center page. Put it on Facebook, print out a copy to give a friend, send an email to the caretakers of young kids that you know. When a parent has bleach in the house, they know the dangers to children. The dangers of button batteries should be known by everyone so that the proper precautions can be taken. We can't be careful of something that we don't know about.
(And if your friends react with "Oh my! Why did you send me that terrible thing about the batteries? I can't stop thinking about batteries now!" . . . well, then good. Better to leave someone aware and slightly paranoid than ignorant to the dangers.)
Few other ingested items will cause potentially fatal damage so quickly. And because parents often are not aware at just how serious battery ingestion is, these batteries may fall into the hands of children, and then get accidentally ingested, without their knowledge.
What Parents Need to Know
1. Button batteries can cause serious injury and death if swallowed.
2. Button batteries are in your home and may be more easily accessible to your child than you think.
3. If your child is playing with a product (key chain, small remote, greeting card, etc) that contains a button battery, they must be supervised.
4. If a child is playing with an item and you are unsure if the battery has fallen out, or you can't find the battery (a remote broke into pieces that scattered, a musical card was torn up, etc) than you need an xray. Head directly to the emergency room and tell them "My child may have swallowed a battery." This is a do-not-sit-in-the-waiting-room type of situation.
5. If you suspect that a battery may have been swallowed, you should call the battery ingestion hotline: 202-625-3333. Likely they will tell you the above. They will also likely tell you that panic is not necessary, but swift action is.
6. Even dead batteries can hold enough charge to kill a child. So dispose of dead batteries appropriately and immediately.
One More Thing
Share this blog post. Or share one of the articles linked below. Or share the National Capital Poison Center page. Put it on Facebook, print out a copy to give a friend, send an email to the caretakers of young kids that you know. When a parent has bleach in the house, they know the dangers to children. The dangers of button batteries should be known by everyone so that the proper precautions can be taken. We can't be careful of something that we don't know about.
(And if your friends react with "Oh my! Why did you send me that terrible thing about the batteries? I can't stop thinking about batteries now!" . . . well, then good. Better to leave someone aware and slightly paranoid than ignorant to the dangers.)
Resources
National Capital Poison Center
A NY Times article about babies and button batteries
A comprehensive article that speaks with a doctor who published a review of button battery data from 1998-2008.
A video from ABC news that shows the batteries and hears from experts.
One mom's story: My son died after swallowing a button battery
Sunday, December 11, 2011
The 2nd in the series---Holiday Card, 2009
So continues the annual parade of holiday-cards-past, leading to the reveal of the 2011 masterpiece :)
When we put together the 2009 card, Maya was 1.5 (and as adorable as ever). Here's the card we mailed out that year, and it's story (the story is copied from a blog post last year, so if it sounds familiar, that's why).
Last year we thought that we had come up with a great card. It was a pictoral representation of 2009, it made us laugh, and we thought it was clever. We didn't anticipate that it would prove to be possibly too clever. Have a look:
Front:
When we put together the 2009 card, Maya was 1.5 (and as adorable as ever). Here's the card we mailed out that year, and it's story (the story is copied from a blog post last year, so if it sounds familiar, that's why).
Last year we thought that we had come up with a great card. It was a pictoral representation of 2009, it made us laugh, and we thought it was clever. We didn't anticipate that it would prove to be possibly too clever. Have a look:
Front:
Sorry that's a little blurry. I'm not technologically savvy enough to know how to clean it up.
Inside:
Get it?
To us, it made total sense. Spring = Maya is sad, Summer = Maya is sad, Fall = Maya is sad . . . but in the Winter, Maya is happy! Tie it all together with "It's the most wonderful time of the year" Christmas song quote, and we loved it. But then we had a few conversations that went like this:
Them: "Hey, we got your card! It was really cute. It was . . . interesting . . . you know, how you picked so many crying pictures."
Us: "Did you get it? Like with the whole 'it's the most wonderful time of the year' thing? You know, because the holiday season is fun, so she was only laughing in the winter?"
Them: (pause) "Ohhhhhhhh . . . "
Us: (Sigh)
Oh well. We still think it was an excellent card :)
To us, it made total sense. Spring = Maya is sad, Summer = Maya is sad, Fall = Maya is sad . . . but in the Winter, Maya is happy! Tie it all together with "It's the most wonderful time of the year" Christmas song quote, and we loved it. But then we had a few conversations that went like this:
Them: "Hey, we got your card! It was really cute. It was . . . interesting . . . you know, how you picked so many crying pictures."
Us: "Did you get it? Like with the whole 'it's the most wonderful time of the year' thing? You know, because the holiday season is fun, so she was only laughing in the winter?"
Them: (pause) "Ohhhhhhhh . . . "
Us: (Sigh)
Oh well. We still think it was an excellent card :)
Friday, December 9, 2011
It's beginning to look a lot like Christmas. Or a strip club.*
My girl is in love with the Christmas tree . . . like mother, like daughter, I suppose :)
In years past, we've set up a gate system to keep her (and last year, her & Parker) away from the tree. That let us have the nice tree with nice ornaments and present underneath and everything. This year we decided to just make the tree Maya-friendly so that she could get involved with it. Our glass and ceramic ornaments have remained packed away. Instead, we're using a box of cheap plastic ones from the drugstore and a bunch of homemade crafty ones.
Repeat.
Cinnamon dough recipe: If you google "cinnamon dough ornaments" you'll find a bunch of recipes, and they're all different. We used about 1 and 3/4 cups of cinnamon, 1 cup of applesauce, and a good squeeze of glue (maybe 1.5 tbl). The dough was too sticky, so I just kept adding flour until it got less sticky and more doughy. You'll need extra cinnamon for coating the countertops and rolling pin.
Ornament prep: After you cut out whatever ornaments you like, stick them in the oven (we did a foil lined cookie sheet) on 200. I flipped them every 45 mins or so, and probably left them in there for 3 hours. Alternately, you can just leave them on a drying rack on the counter overnight. Either way, your kitchen will smell like baked goods and make you hungry.
Decorating: We used plain old tempera paints and a paintbrush, because we had it. I liked the sequins but Maya didn't. If you have a 3 year old, I would say to avoid glitter, but really, I'm kidding myself, because it was really fun and I think we'll be using it again this week. But if you are really type A, avoiding the glitter is a good idea. You will be glittery for a while.
In years past, we've set up a gate system to keep her (and last year, her & Parker) away from the tree. That let us have the nice tree with nice ornaments and present underneath and everything. This year we decided to just make the tree Maya-friendly so that she could get involved with it. Our glass and ceramic ornaments have remained packed away. Instead, we're using a box of cheap plastic ones from the drugstore and a bunch of homemade crafty ones.
There's a huge tree in the living room!
She was a great decorating helper. She would walk over to where I sat on the floor, adding (plastic) hooks to ornaments. I would give her an ornament and she would carry it over to Dave, who would then put it on the tree. It was a great system, and Maya was delighted. Until we were done.
After all of the ornaments were up Maya went into rearranging mode. She takes an ornmanet off of the tree, looks at it, brings it to me or Dave, grabs our hand and leads us to the tree, and points at where she thinks the ornament should go. We hang it up and walk away.
Forever.
Either she loves decorating the tree or she's got some OCD decorating tendencies.
Hmmm . . . I'm not sure about the placement of this one.
Parker, you can't help with this! Silly doggie.
What? This one needs adjusting, too.
Now that she's big enough to do some fun stuff, I've been trying to get crafty. I printed out some coloring sheets (mostly alligators and snowmen---just google "alligator coloring printable" or whatver and stuff will pop up)---we're coloring and painting them, and we'll laminate to hang them on the tree. Also, we made some cinnamon dough ornaments ("recipe" at the end of this post, if you're interested).
Trying to get a shot of the ingredients, but someone's anxious little fingers kept stealing supplies.
Cinnamon dough smells fantastic!
We used holiday cookie cutters and our play dough cutters---that's how we got the alligator and giraffe.
After baking.
After painting.
I thought adding sequins would be good OT practice. Maya thought it was terribly boring and threw the packet of sequins. Dave kept saying "Sequins? Is that a word? Do people really say the word 'sequins'? That can't be a real word." I rolled my eyes at both of them and just did it myself.
But she LOVED the glitter shakers!
This is about where the glitter started to go everywhere. We noticed that we were all covered in it--hair, face, table, floor, feet, clothes, everything. And I thought "man, this is a rookie parenting mistake." So if you see us 2 months from now and we're still shimmering, this is why. Today I still had slitter in my eyebrows and keep finding it on my hands. I feel like I need to wear a sign that says "My glitter is unintentional."
Then she spilled 2 tubes all over herself. But in this picture she's trying to pick it off of her jeans and put it back in the tube. I'll give you one guess at how effective that was.
Dave decided that vacuuming her was the most efficient way to clean up. She liked it :)
Finished products. (We actually left some plain, some painted, and some all glittered up.)
Details:
Cinnamon dough recipe: If you google "cinnamon dough ornaments" you'll find a bunch of recipes, and they're all different. We used about 1 and 3/4 cups of cinnamon, 1 cup of applesauce, and a good squeeze of glue (maybe 1.5 tbl). The dough was too sticky, so I just kept adding flour until it got less sticky and more doughy. You'll need extra cinnamon for coating the countertops and rolling pin.
Ornament prep: After you cut out whatever ornaments you like, stick them in the oven (we did a foil lined cookie sheet) on 200. I flipped them every 45 mins or so, and probably left them in there for 3 hours. Alternately, you can just leave them on a drying rack on the counter overnight. Either way, your kitchen will smell like baked goods and make you hungry.
Decorating: We used plain old tempera paints and a paintbrush, because we had it. I liked the sequins but Maya didn't. If you have a 3 year old, I would say to avoid glitter, but really, I'm kidding myself, because it was really fun and I think we'll be using it again this week. But if you are really type A, avoiding the glitter is a good idea. You will be glittery for a while.
*Just to be clear, in case you've reached the end and are still confused, the strip club comment is because of the glitter all over the floor, counters, and people in my apartment. There's nothing else strip clubby going on here.
Thursday, December 8, 2011
It's a December tradition here on the blog . . .
December (aka the best month ever) kind of slid right past me this year. We had the trip to Yale, the start of my new job, the assistive tech re-evaluation, training on my new job, and the most amazing fundraiser ever . . . and suddenly it's already Dec. 8th. I've got to get on the ball.
Here's why December is the best:
1. It can possibly snow in December. I am over-the-moon-crazy-excited when it snows.
2. December smells good. The air is crisp--outside it smells like snow and fireplaces and inside it smells like pine and cinnamon.
3. There is no prettier way to light a room than with a lit up Christmas tree.
4. It's basically the only month of the year when I bake. And then I have an excuse to eat baked things.
5. Giving people presents is super fun.
6. People are happier. I mean, they're a little crazy too (especially in retail arenas) but generally, people are just more merry.
7. City streets look like enchanted places when trees and balconies are strung up with lights.
8. Christmas carols sound like home.
9. My birthday is the week before Christmas, and I love the fact that everyone is really excited that week.
10. Christmas morning will always feel like the most magical morning of the year.
This year brings the added bonus that Maya is kind of old enough to "get it." Last year she was in love with Santa, but she still had no idea what his deal is. This year I think that if we talk about it enough she might actually understand. She's loving the tree, and the holiday crafts we've been doing (more to come on those tomorrow). It's really fun!
If you're new to the blog, you might not know that holiday cards are kind of our thing. We try to come up with something cute and different every year, and I love sending them out. Last year I shared the cards from holidays past---and I'm going to make that a December tradition. We'll do 2008- 2009- 2010 -and then this year's card (I can't wait to share it).
Without further ado, Maya's first ever holiday card (2008):
Here's why December is the best:
1. It can possibly snow in December. I am over-the-moon-crazy-excited when it snows.
2. December smells good. The air is crisp--outside it smells like snow and fireplaces and inside it smells like pine and cinnamon.
3. There is no prettier way to light a room than with a lit up Christmas tree.
4. It's basically the only month of the year when I bake. And then I have an excuse to eat baked things.
5. Giving people presents is super fun.
6. People are happier. I mean, they're a little crazy too (especially in retail arenas) but generally, people are just more merry.
7. City streets look like enchanted places when trees and balconies are strung up with lights.
8. Christmas carols sound like home.
9. My birthday is the week before Christmas, and I love the fact that everyone is really excited that week.
10. Christmas morning will always feel like the most magical morning of the year.
This year brings the added bonus that Maya is kind of old enough to "get it." Last year she was in love with Santa, but she still had no idea what his deal is. This year I think that if we talk about it enough she might actually understand. She's loving the tree, and the holiday crafts we've been doing (more to come on those tomorrow). It's really fun!
If you're new to the blog, you might not know that holiday cards are kind of our thing. We try to come up with something cute and different every year, and I love sending them out. Last year I shared the cards from holidays past---and I'm going to make that a December tradition. We'll do 2008- 2009- 2010 -and then this year's card (I can't wait to share it).
Without further ado, Maya's first ever holiday card (2008):
Yes, I really put her in a pot. Yes, it was really on the stove. She couldn't move, the burners weren't on, and she was (clearly) having fun. So don't hate mail me.
Happy December, everyone :)
Tuesday, December 6, 2011
Thank you
In the past 6 hours Maya's fundraising goal has been met.
This has been amazing.
The texts, instant messages, Facebook messages and phone calls have been coming in, asking if we're watching the page, if we're reloading, if we see the numbers adding up.
Yes, we've been reloading. Constantly. Amazed.
Thank you.
Maya's fundraising page will remain up. Any additional funds raised will go directly to other children who are waiting to have their samples sequenced (not to larger, institute-wide fundraising). These are kids just like Maya, and they appreciate your support and generosity as well.
My contact at RGI called me a little while ago to ask if we would be ok with leaving the page up to catch potential extra funds for other kids and we were more than happy to do so. He also informed me that he had reached out to Dr. Yale to let him know that he should get ready to start sequencing. He was floored by the speed and generosity of Maya's network.
She's got a lot of people who love her and are cheering her on.
Thank you.
This has been amazing.
The texts, instant messages, Facebook messages and phone calls have been coming in, asking if we're watching the page, if we're reloading, if we see the numbers adding up.
Yes, we've been reloading. Constantly. Amazed.
Thank you.
Maya's fundraising page will remain up. Any additional funds raised will go directly to other children who are waiting to have their samples sequenced (not to larger, institute-wide fundraising). These are kids just like Maya, and they appreciate your support and generosity as well.
My contact at RGI called me a little while ago to ask if we would be ok with leaving the page up to catch potential extra funds for other kids and we were more than happy to do so. He also informed me that he had reached out to Dr. Yale to let him know that he should get ready to start sequencing. He was floored by the speed and generosity of Maya's network.
She's got a lot of people who love her and are cheering her on.
Thank you.
We've got some medical news (The conclusion)
This post is a continuation of yesterday's post.
So, picking up where we left off: Six months ago I received a Facebook message from a blog reader which, after a few exchanges, put me in contact with a group called Rare Genomics Institute (more on them later). They wanted to know if we would be interested in having Maya’s DNA sequenced. I rolled the information around in my head for a few days before agreeing to the first phone call to discuss it all.
I was interested, but cautiously---DNA sequencing is the next (and maybe final?) frontier of rare disease diagnosis, but is pretty novel, and therefore comes with some uncertainty. It’s also not yet clinically available . . . meaning that we can’t just go to a doctor and ask them to order the test, we would have to be part of a research trial (which than raises some privacy questions). There were a lot of questions, phone calls, and emails. We learned a lot, and our concerns were laid to rest. We decided to move ahead with figuring out whether we were a match for the research.
Over the next few months, I compiled medical records. I called hospitals and doctor’s offices, signed releases, and charts began to arrive. I read the files, kind of awestruck by the sheer number of appointments that we’ve had, many of which I have little to no memory of. I typed up a summary packet of findings, test results, in-office notations, anything that might be a clue. I traded emails with my contact at RGI, and later with the doctor that we would (hopefully) be seeing at Yale. He agreed that we were an interesting case (um . . . thanks?). And that’s what brought us to Yale last week.
At Yale, we met with Dr. Yale (ok, that might be a fake name), who went over my medical summary packet and talked with us (for nearly 2 hours). The good news was that he didn’t have any guesses as to what syndrome Maya has. (Yeah, you read that right. I hate new syndrome guesses—they stress me out and lead me to google the syndrome and read everything about it, then I cry, then I toughen up and accept it, and then 4-6 weeks later we find out that’s not what she has anyway. Exhausting.) We were in the exam room for nearly 2 hours, Maya circling around the room, pulling toys out of my giant toy bag and scattering them. Dave and I delivered another brilliant tag-team performance, alternating as one of us spoke with the doctor and the other entertained increasingly restless Maya. She wanted to be put on the exam table, then she wanted stickers, then she wanted to rip the paper on the table to shreds, then she wanted to get down, then she was throwing blocks. She kept sneaking behind the doctor’s chair to bangbangbang on the computer keyboard that was right at eye level. She was a little tornado, first cycling slowly but then with growing ferocity (and noise) as the appointment went from kind of long to long to too long. In the end, Dr. Yale thought that Maya was a perfect candidate for exome sequencing.
An aside on DNA/genome/exome sequencing:
Your DNA is made up of 6 billion base pairs. Current clinical genetic testing only looks at a very small portion of the DNA. Whole genome sequencing would look at basically the entire DNA of an individual, but is extremely expensive (although prices are rapidly dropping) and time consuming. Exome sequencing involves sequencing only the protein-coding sections (exons) of the DNA. These exons make up only 1% of the total DNA, but are believed to be responsible for about 85% of disease-causing mutations.
All people have genetic mutations, and most of these mutations are completely harmless. Because of these harmeless mutations, exome sequencing will turn up over many, many mutations, and scientists will have to work to figure out which ones are meaningless and which ones are possible candidates for causing Maya’s syndrome. They will need Dave & I to have our exons sequenced as well, so that they can compare her mutations to ours (ex. If Maya has a specific mutation and I have an identical one, it would be unlikely that that mutation is the source of her issues).
So, while at Yale we all had our blood drawn, the samples have been received and are in good shape, and now we wait.
This is the tricky part.
Someday, exome sequencing (and, likely, genome sequencing) will be routine tests that are available through a geneticist, covered by insurance, just like our microarray and karyotype were. Both types of sequencing have dramatically dropped in price, and the ongoing research efforts will hopefully demonstrate the necessity of making sequencing routinely available to insurance companies. However, it will likely be another few years (2? 5? 10? I've heard different guesses from different doctors) before that happens. With the help of RGI, we were able to find a doctor and a lab that can sequence our exomes, but there is no grant money that will cover our sequencing, because Maya's uniqueness isn't a perfect match for any of the ongoing funded studies with new patient slots available.
Bottom line: We have to raise the money to pay for the exome sequencing ourselves.
Dave and I are glad to have partnered with Rare Genomics Institute (RGI) in our quest to find a diagnosis. They are passionate about helping families with undiagnosed children attain DNA sequencing, and they were able to help us with some of the biggest challenges of the procees: screening to make sure we were good candidates, matching us with the doctor and the laboratory at Yale, and helping us to get the appointment (and to get it pushed up a few months). And now they have built a fundraising platform for Maya (and, thus far, two other children who are in the same situation). Their idea is this: rather than having a family try to directly fund DNA sequencing (as families of kids with special needs are typically bleeding money to private therapies, uncovered medical bills, devices, etc) a crowd funding platform is set up. It allows many people to make small donations that will add up to fund the project.
We need to raise $2,500 for the exome sequencing (genome sequencing would have been six times that amount). RGI has set up a fundraising page for Maya, and she has already received some donations from within the scientific community (aka generous strangers who are interested in supporting genetic research). When the fundraising is complete, the sequencing will begin. From there, it will likely be a minimum of six months before we hear about any potential findings.
We’re (cautiously) hopeful that this will be the beginning of the end.
A few notes:
So, picking up where we left off: Six months ago I received a Facebook message from a blog reader which, after a few exchanges, put me in contact with a group called Rare Genomics Institute (more on them later). They wanted to know if we would be interested in having Maya’s DNA sequenced. I rolled the information around in my head for a few days before agreeing to the first phone call to discuss it all.
I was interested, but cautiously---DNA sequencing is the next (and maybe final?) frontier of rare disease diagnosis, but is pretty novel, and therefore comes with some uncertainty. It’s also not yet clinically available . . . meaning that we can’t just go to a doctor and ask them to order the test, we would have to be part of a research trial (which than raises some privacy questions). There were a lot of questions, phone calls, and emails. We learned a lot, and our concerns were laid to rest. We decided to move ahead with figuring out whether we were a match for the research.
Over the next few months, I compiled medical records. I called hospitals and doctor’s offices, signed releases, and charts began to arrive. I read the files, kind of awestruck by the sheer number of appointments that we’ve had, many of which I have little to no memory of. I typed up a summary packet of findings, test results, in-office notations, anything that might be a clue. I traded emails with my contact at RGI, and later with the doctor that we would (hopefully) be seeing at Yale. He agreed that we were an interesting case (um . . . thanks?). And that’s what brought us to Yale last week.
At Yale, we met with Dr. Yale (ok, that might be a fake name), who went over my medical summary packet and talked with us (for nearly 2 hours). The good news was that he didn’t have any guesses as to what syndrome Maya has. (Yeah, you read that right. I hate new syndrome guesses—they stress me out and lead me to google the syndrome and read everything about it, then I cry, then I toughen up and accept it, and then 4-6 weeks later we find out that’s not what she has anyway. Exhausting.) We were in the exam room for nearly 2 hours, Maya circling around the room, pulling toys out of my giant toy bag and scattering them. Dave and I delivered another brilliant tag-team performance, alternating as one of us spoke with the doctor and the other entertained increasingly restless Maya. She wanted to be put on the exam table, then she wanted stickers, then she wanted to rip the paper on the table to shreds, then she wanted to get down, then she was throwing blocks. She kept sneaking behind the doctor’s chair to bangbangbang on the computer keyboard that was right at eye level. She was a little tornado, first cycling slowly but then with growing ferocity (and noise) as the appointment went from kind of long to long to too long. In the end, Dr. Yale thought that Maya was a perfect candidate for exome sequencing.
An aside on DNA/genome/exome sequencing:
Your DNA is made up of 6 billion base pairs. Current clinical genetic testing only looks at a very small portion of the DNA. Whole genome sequencing would look at basically the entire DNA of an individual, but is extremely expensive (although prices are rapidly dropping) and time consuming. Exome sequencing involves sequencing only the protein-coding sections (exons) of the DNA. These exons make up only 1% of the total DNA, but are believed to be responsible for about 85% of disease-causing mutations.
All people have genetic mutations, and most of these mutations are completely harmless. Because of these harmeless mutations, exome sequencing will turn up over many, many mutations, and scientists will have to work to figure out which ones are meaningless and which ones are possible candidates for causing Maya’s syndrome. They will need Dave & I to have our exons sequenced as well, so that they can compare her mutations to ours (ex. If Maya has a specific mutation and I have an identical one, it would be unlikely that that mutation is the source of her issues).
So, while at Yale we all had our blood drawn, the samples have been received and are in good shape, and now we wait.
This is the tricky part.
Someday, exome sequencing (and, likely, genome sequencing) will be routine tests that are available through a geneticist, covered by insurance, just like our microarray and karyotype were. Both types of sequencing have dramatically dropped in price, and the ongoing research efforts will hopefully demonstrate the necessity of making sequencing routinely available to insurance companies. However, it will likely be another few years (2? 5? 10? I've heard different guesses from different doctors) before that happens. With the help of RGI, we were able to find a doctor and a lab that can sequence our exomes, but there is no grant money that will cover our sequencing, because Maya's uniqueness isn't a perfect match for any of the ongoing funded studies with new patient slots available.
Bottom line: We have to raise the money to pay for the exome sequencing ourselves.
Dave and I are glad to have partnered with Rare Genomics Institute (RGI) in our quest to find a diagnosis. They are passionate about helping families with undiagnosed children attain DNA sequencing, and they were able to help us with some of the biggest challenges of the procees: screening to make sure we were good candidates, matching us with the doctor and the laboratory at Yale, and helping us to get the appointment (and to get it pushed up a few months). And now they have built a fundraising platform for Maya (and, thus far, two other children who are in the same situation). Their idea is this: rather than having a family try to directly fund DNA sequencing (as families of kids with special needs are typically bleeding money to private therapies, uncovered medical bills, devices, etc) a crowd funding platform is set up. It allows many people to make small donations that will add up to fund the project.
We need to raise $2,500 for the exome sequencing (genome sequencing would have been six times that amount). RGI has set up a fundraising page for Maya, and she has already received some donations from within the scientific community (aka generous strangers who are interested in supporting genetic research). When the fundraising is complete, the sequencing will begin. From there, it will likely be a minimum of six months before we hear about any potential findings.
We’re (cautiously) hopeful that this will be the beginning of the end.
A few notes:
- If you choose to donate to Maya’s fundraising page, we thank you sincerely. You should know that all donations are tax-deductible and go directly to the funding of Maya’s sequencing project. The money will go to Maya’s fund at RGI, then will transfer directly from RGI to Yale. When the money has been received and confirmed by Yale, our sequencing will commence.
- You may notice that we only need to raise $2,500, while the other children on the site are raising $7,500. This is due to the difference in prices at the hospitals that they are using. We are the first patients to go through Yale with RGI, and the costs associated with the Yale lab are significantly less than many other hospitals.
- If you have a child who is undiagnosed and are interested in finding out whether RGI could help you with genetic sequencing, the best way to contact them is through the contact form on their website, here.
Monday, December 5, 2011
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.
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.
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.
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 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 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.
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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.
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