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 When he turned 6, he lost some services because that diagnosis was no longer valid.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.
Showing posts with label SWAN. Show all posts
Showing posts with label SWAN. Show all posts
Thursday, April 12, 2012
Thursday, August 4, 2011
Life, Undiagnosed (and how I've come to be ok with that)
I remember the first genetic test we ran.
Actually, rewind that.
I remember the phone call that led to the first genetic test we ran. We had met with a private feeding therapist because I could see that Maya would need help learning how to eat. A few days after the consult she called, and with a wavering voice full of apologies, told me something like “I really, really don’t want you to worry about this, but I know you will (she was a mom, too). I’ve spoken with a geneticist and we think that maybe you should meet with a doctor and get tested for Down syndrome.”
On the outside, there wasn’t much of a change. I was standing in the kitchen, with the phone in one hand and my 7 month old baby in the other . . . I leaned back against the counter and felt the color drain from my face.
On the inside, I fell to my knees.
And my inner voice started to beg “No no no no no no. This can’t happen to her, this can’t happen to me. Let her not eat, let her not talk, let her mouth be jumbled and useless, but don’t let her have something big and genetic. Something that could affect her mind. Let her be smart. Let this test be negative. Please, please, just let this test be negative.”
And (a very painful month later) it was.
But my (huge) sigh of relief was cut off mid-exhale as I realized that the geneticists weren’t washing their hands of us. The “come back in 6 months, just to check your progress” request whispered “You’re not done here, friend. Don’t celebrate just yet.”
And so it continued, appointments with a barrage of specialists, each doing their exams and tests. I couldn’t help but notice a gradual, but significant sliding shift in my perspective . . . while one part of me would enter a doctor’s office thinking “don’t find anything, don’t find anything” another part was thinking “give us some information, please”. As time went by it was undeniable that something waswrong different . . . it was time to find out what that something was.
More time passed. More normal tests. But clearly, our situation was not normal.
My small spark of desire for a diagnosis started to flare up. I wanted a name. I wanted a prognosis. I wanted to be able to connect with other parents and plug into a support system. I wanted to hear from people with older kids and find out what their kids could and couldn’t do.
At naptime, I googled. I looked at syndrome descriptions, symptoms, prognoses. I became convinced that she had a dozen different conditions. I looked at pictures of diagnosed children and thought “those are her eyes! This must be the one!” My heart would pound and adrenaline would rush as I convinced myself I had found the answer, and then crash when I realized that a major symptom didn’t fit. Empty-handed, again. By the time she woke up I would be wiping away tears, again. Anxious. Searching. Desperate.
But at some point, I realized something.
Unless the diagnosis came with a crystal ball, it still wouldn’t answer the questions that raced around my head when she was asleep and the house was quiet and I had time to think. Somehow my obsessing over “The Diagnosis” had turned it into some kind of huge goal---if we could just get The Diagnosis, then we would know! We wouldn’t be in the dark! Our questions would be answered!
I had my mental list of questions-that-matter-the-most at the ready, just waiting for The Diagnosis to come along and predict our future.
It seemed likely that any diagnosis would come with a prognosis that was about as clear as mud.
And even if we got a diagnosis and a prognosis with some concrete won’ts (like “She probably won’t be able to walk independently”), odds are that I wouldn’t accept them anyway. I would keep believing and pushing, same as always. It would be impossible for me to give up on walking or talking when my girl has only had a few years to practice. Skills will come . . . or they won’t. Knowing The Diagnosis won’t change any of that.
So really, what’s the point in worrying about it?
Adding a few words to our chart won’t change anything (now. Believe me, I would still like to find a diagnosis before she turns 5, because it would make advocating for services much easier. And it would be nice to know if we should expect any medical complications down the line). But for now, she is who she is (hilarious, clever little thing) and we are doing the best job we can of helping her to grow and learn, just like every other parent on the planet.
A diagnosis would be nice, and we’ll keep our eyes out for one . . . but if it never turns up, well, I guess that would be ok, too.
(*This is the only question here that I for sure know the answer to. Is it possible that her little brain is learning and growing and forming connections and will someday change the world? Of course it is, silly. Anything is possible.)
My past thoughts on our undiagnosed life can be found here and here.
.
Actually, rewind that.
I remember the phone call that led to the first genetic test we ran. We had met with a private feeding therapist because I could see that Maya would need help learning how to eat. A few days after the consult she called, and with a wavering voice full of apologies, told me something like “I really, really don’t want you to worry about this, but I know you will (she was a mom, too). I’ve spoken with a geneticist and we think that maybe you should meet with a doctor and get tested for Down syndrome.”
On the outside, there wasn’t much of a change. I was standing in the kitchen, with the phone in one hand and my 7 month old baby in the other . . . I leaned back against the counter and felt the color drain from my face.
On the inside, I fell to my knees.
And my inner voice started to beg “No no no no no no. This can’t happen to her, this can’t happen to me. Let her not eat, let her not talk, let her mouth be jumbled and useless, but don’t let her have something big and genetic. Something that could affect her mind. Let her be smart. Let this test be negative. Please, please, just let this test be negative.”
And (a very painful month later) it was.
But my (huge) sigh of relief was cut off mid-exhale as I realized that the geneticists weren’t washing their hands of us. The “come back in 6 months, just to check your progress” request whispered “You’re not done here, friend. Don’t celebrate just yet.”
And so it continued, appointments with a barrage of specialists, each doing their exams and tests. I couldn’t help but notice a gradual, but significant sliding shift in my perspective . . . while one part of me would enter a doctor’s office thinking “don’t find anything, don’t find anything” another part was thinking “give us some information, please”. As time went by it was undeniable that something was
More time passed. More normal tests. But clearly, our situation was not normal.
My small spark of desire for a diagnosis started to flare up. I wanted a name. I wanted a prognosis. I wanted to be able to connect with other parents and plug into a support system. I wanted to hear from people with older kids and find out what their kids could and couldn’t do.
At naptime, I googled. I looked at syndrome descriptions, symptoms, prognoses. I became convinced that she had a dozen different conditions. I looked at pictures of diagnosed children and thought “those are her eyes! This must be the one!” My heart would pound and adrenaline would rush as I convinced myself I had found the answer, and then crash when I realized that a major symptom didn’t fit. Empty-handed, again. By the time she woke up I would be wiping away tears, again. Anxious. Searching. Desperate.
But at some point, I realized something.
Unless the diagnosis came with a crystal ball, it still wouldn’t answer the questions that raced around my head when she was asleep and the house was quiet and I had time to think. Somehow my obsessing over “The Diagnosis” had turned it into some kind of huge goal---if we could just get The Diagnosis, then we would know! We wouldn’t be in the dark! Our questions would be answered!
I had my mental list of questions-that-matter-the-most at the ready, just waiting for The Diagnosis to come along and predict our future.
- Will she walk and run? And jump? Will she be able to balance on one foot, or to go up and down stairs without assistance? (More specifically, will she move “typically” . . . or will she always have a unique way of moving that sets her apart from the other people on the sidewalk?)
- Will she talk? (Will she speak well enough someday that no one would know that she was so late to the speaking game?)
- Will she be smart? (Will she read and write and do math? Will she understand abstract ideas? Will she know what I mean when I say it’s her birthday?)
- Will she follow the path of a typical life, or will she be a dependent forever? (Will she go to college? Will she ever live alone, or is a group home situation in our future? Will she date, or get married? Will she be a mom someday?)
- Might she be exceptional? (Einstein didn’t talk until he was 4, I’ve heard. Give me a silver lining. Is it possible that while she’s trapped in this weak, disorganized body, her little brain is learning and growing and forming connections and will someday change the world?*)
It seemed likely that any diagnosis would come with a prognosis that was about as clear as mud.
And even if we got a diagnosis and a prognosis with some concrete won’ts (like “She probably won’t be able to walk independently”), odds are that I wouldn’t accept them anyway. I would keep believing and pushing, same as always. It would be impossible for me to give up on walking or talking when my girl has only had a few years to practice. Skills will come . . . or they won’t. Knowing The Diagnosis won’t change any of that.
So really, what’s the point in worrying about it?
Adding a few words to our chart won’t change anything (now. Believe me, I would still like to find a diagnosis before she turns 5, because it would make advocating for services much easier. And it would be nice to know if we should expect any medical complications down the line). But for now, she is who she is (hilarious, clever little thing) and we are doing the best job we can of helping her to grow and learn, just like every other parent on the planet.
A diagnosis would be nice, and we’ll keep our eyes out for one . . . but if it never turns up, well, I guess that would be ok, too.
(*This is the only question here that I for sure know the answer to. Is it possible that her little brain is learning and growing and forming connections and will someday change the world? Of course it is, silly. Anything is possible.)
My past thoughts on our undiagnosed life can be found here and here.
.
Monday, November 22, 2010
Maya had a little lamb, little lamb, little lamb . . . *
I was walking Maya (in the jogging stroller) and Parker down "Main St." the other day. As a mom with a young (3 years old, maybe?) son walked by, I overheard this conversation:
Mom: Did you see that big dog?
Son: No, mom, that wasn't a dog. It was a sheep!
Mom: Ah, I see.
I sympathize with that mom. It's tough to explain that Parker isn't a sheep, he does look sheep-ish.
Sometimes Maya forgets he's a dog and thinks he's a pillow:
Mom: Did you see that big dog?
Son: No, mom, that wasn't a dog. It was a sheep!
Mom: Ah, I see.
I sympathize with that mom. It's tough to explain that Parker isn't a sheep, he does look sheep-ish.
Sometimes Maya forgets he's a dog and thinks he's a pillow:
I'll give you a big kiss, my Parker
In other news, Maya's most recent genetic test came back today----negative. It was a FISH test to look for mosaic down syndrome (again---but this one looked at over 400 cells in case she had a very low percentage of mosaicism). Not one of the cells had an extra chromosome, making it very unlikely that the diagnosis would fit. Back to square one.
Oh, and in other other news, our holiday card is almost done. :)
Wednesday, October 20, 2010
What's in a name?
I used to think, not much. But after a Special Needs School Fair last night, and a frustrating genetics appointment this morning, I'm finding that I'm starting to feel like a name is more important than I initially thought. I'm speaking, of course, of a name for the source of Maya's delays. A diagnosis.
Last night the school fair was bustling, overwhelming---a million booths, representing all of the schools that can accomodate students with different needs from preschools to high schools. Dave entertained Maya (they came to make it more of a family trip and less of something-I-was-afraid-of) while I scoured the map of the event, cross referencing different needs each school could accomodate and the neighborhoods they were located in. And then I went to booths and waited for my turn to talk to the representatives from the schools I was interested in.
And while I waited I heard snippets of conversations around me "My son has cerebral palsy and uses a wheelchair" "My daughter is deaf but uses signs", etc. But when it was my turn, I didn't have the right words to use. I hadn't thought far enough ahead, and when they asked about my child's special needs, all that I had were "can't's".
"Oh, well, you know, we don't exactly know what she has . . . some genetic syndrome . . . we're not really sure . . . she can't talk, can't walk, can't stand alone, etc."
And everytime I said it, I felt worse and worse. Who wants to be defined by their "can'ts"?
I wouldn't want to walk into a group of new people, shake hands and say "Hi, I can't run, can't jog, can't do push ups, can't write without starting every other sentence with "and", and can't do mental math if the problem involves a lot of 7's. Oh, and my name is Dana."
I used to think that a diagnosis wouldn't matter, because it wouldn't change who Maya is, and it wouldn't change our plan of action (re: therapies). But now it would be kind of nice---nice to be able to say "She has Abc Syndrome" and then move on. As we get ready to transition out of the Early Intervention program and into the CPSE (preschool) system, a diagnosis would make arguing for services easier, applying for programs easier, and it would help us maybe find other families who are in the same place that we are.
At our genetics appointment this morning, another test came back negative. The geneticist is leaning towards one diagnosis (which can't be tested for), I don't think it's a good fit and I'm leaning another way (also difficult to test for). We may both be wrong, who knows. More bloodwork was ordered, results to come back in a few months.
Until then, Maya remains the same animal-loving, silly girl. She spotted this goat in a store window (yes, a real stuffed goat . . .only on Madison Avenue) and shrieked and pointed until I wheeled her over:
(You should've seen the tears as we wheeled away. She's screaming hysterically, passersby are giving me looks, and I'm saying "It wasn't even a real goat!" over and over)
She really wants to be vertical all of a sudden, and is trying like crazy to get around (here, marching through the hospital hallway this morning with Dad)
Last night the school fair was bustling, overwhelming---a million booths, representing all of the schools that can accomodate students with different needs from preschools to high schools. Dave entertained Maya (they came to make it more of a family trip and less of something-I-was-afraid-of) while I scoured the map of the event, cross referencing different needs each school could accomodate and the neighborhoods they were located in. And then I went to booths and waited for my turn to talk to the representatives from the schools I was interested in.
And while I waited I heard snippets of conversations around me "My son has cerebral palsy and uses a wheelchair" "My daughter is deaf but uses signs", etc. But when it was my turn, I didn't have the right words to use. I hadn't thought far enough ahead, and when they asked about my child's special needs, all that I had were "can't's".
"Oh, well, you know, we don't exactly know what she has . . . some genetic syndrome . . . we're not really sure . . . she can't talk, can't walk, can't stand alone, etc."
And everytime I said it, I felt worse and worse. Who wants to be defined by their "can'ts"?
I wouldn't want to walk into a group of new people, shake hands and say "Hi, I can't run, can't jog, can't do push ups, can't write without starting every other sentence with "and", and can't do mental math if the problem involves a lot of 7's. Oh, and my name is Dana."
I used to think that a diagnosis wouldn't matter, because it wouldn't change who Maya is, and it wouldn't change our plan of action (re: therapies). But now it would be kind of nice---nice to be able to say "She has Abc Syndrome" and then move on. As we get ready to transition out of the Early Intervention program and into the CPSE (preschool) system, a diagnosis would make arguing for services easier, applying for programs easier, and it would help us maybe find other families who are in the same place that we are.
At our genetics appointment this morning, another test came back negative. The geneticist is leaning towards one diagnosis (which can't be tested for), I don't think it's a good fit and I'm leaning another way (also difficult to test for). We may both be wrong, who knows. More bloodwork was ordered, results to come back in a few months.
Until then, Maya remains the same animal-loving, silly girl. She spotted this goat in a store window (yes, a real stuffed goat . . .only on Madison Avenue) and shrieked and pointed until I wheeled her over:
She really wants to be vertical all of a sudden, and is trying like crazy to get around (here, marching through the hospital hallway this morning with Dad)
And while her form is lacking, she's getting quick with the stroller----and SHE CAN STEER NOW!!!!!!!!!! This is huge . . . it means that she can decide where she wants to go and actually make that happen :)
Notice the proud-as-can-be smile at 0:08, and the steering work at 0:20
As always, if you see a blank square with a play button, click play and the video will appear . . .Tuesday, October 5, 2010
Amsterdam International
To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
And it will change who you are, for the better.
© Dana Nieder 10/2010 All Rights Reserved
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
And it will change who you are, for the better.
© Dana Nieder 10/2010 All Rights Reserved
Wednesday, September 22, 2010
Learned Helplessness & Early Intervention
Warning: The first three paragraphs here are kind of science nerd-y, but I tried to keep it short, sweet, & simple, and I think what I'm getting at here is really interesting from a psychology standpoint.
The Theory:
As you may or may not know, I was a zoology major in college. I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology).
There is a very interesting model of animal (and human) behavior called "Learned Helplessness". Basically, experimenters exposed dogs to a series of shocks. "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks. Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them. "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks.
Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up. They didn't assert themselves. They were depressed. (Human tests have found similar results.)
I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.
The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system. I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry. And, honestly, I'm still pretty ticked. Here's the backstory:
I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints. Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay.
Causing a big delay?---Ha! Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore. Now I'm trying to get on people's nerves like it's my freaking job. I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.
If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:
10:15: Called Service Coordinator work line, left message
2:00: Called SC's cell phone (which she prefers to be reached on), left message
2:30: Called SC's supervisor, left message
4:15: Called SC's work line again, left another message
4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.
She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things." Thursday. Thursday? If she calls Thursday, the signer person won't even get the message until Friday afternoon. And no way they'll call her back on Friday. So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH
I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers. So tomorrow I'll start calling the new number.
How can this be so hard.
My effingg kid can't walk. I need these splints. Sign the papers.
I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )
In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."
And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't. You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.
Plus---think for a moment about these calls I'm making. I'm trying to get splints so that Maya can stand and walk. Everyone who is in Early Intervention has kids with specials needs who are younger than 3. So these people trying to make the calls? We're pretty much near the end of our emotional rope a lot of the time.
We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.
We are already angry and frustrated, feeling like we try to help but things don't work.
We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".
-or-
We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".
Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly. For now anyway. I'm sure I'll get frustrated again :)
So that's where I've been. And now , here are some totally random pictures from the weekend, just for fun:
The Theory:
As you may or may not know, I was a zoology major in college. I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology).
There is a very interesting model of animal (and human) behavior called "Learned Helplessness". Basically, experimenters exposed dogs to a series of shocks. "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks. Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them. "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks.
Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up. They didn't assert themselves. They were depressed. (Human tests have found similar results.)
I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.
The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system. I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry. And, honestly, I'm still pretty ticked. Here's the backstory:
I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints. Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay.
Causing a big delay?---Ha! Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore. Now I'm trying to get on people's nerves like it's my freaking job. I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.
If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:
10:15: Called Service Coordinator work line, left message
2:00: Called SC's cell phone (which she prefers to be reached on), left message
2:30: Called SC's supervisor, left message
4:15: Called SC's work line again, left another message
4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.
She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things." Thursday. Thursday? If she calls Thursday, the signer person won't even get the message until Friday afternoon. And no way they'll call her back on Friday. So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH
I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers. So tomorrow I'll start calling the new number.
How can this be so hard.
My effingg kid can't walk. I need these splints. Sign the papers.
I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )
In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."
And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't. You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.
Plus---think for a moment about these calls I'm making. I'm trying to get splints so that Maya can stand and walk. Everyone who is in Early Intervention has kids with specials needs who are younger than 3. So these people trying to make the calls? We're pretty much near the end of our emotional rope a lot of the time.
We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.
We are already angry and frustrated, feeling like we try to help but things don't work.
We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".
-or-
We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".
Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly. For now anyway. I'm sure I'll get frustrated again :)
So that's where I've been. And now , here are some totally random pictures from the weekend, just for fun:
Waiting for Daddy in the lobby of the building (he took this pic)
Shopping is so exhausting. Sometimes I just need a break.
In light of these recent stressors, I've needed to up my caffeine intake.
Tuesday, August 31, 2010
This isn't what (I thought) I wanted
Tomorrow Dave goes back to work, and a week from tomorrow the students return. There's definitely a part of me that wishes I was going with him . . . I like getting up early, talking with the other staff (I <3 the KIPP family), being in brainstorming sessions and having philosophical this-is-what-we-want-our-school-to-be-like meetings. Planning, photocopies, planning, organizing, planning . . . I like the excitement and busy-ness, the sense of new beginnings, that comes with the start of a new year.
But tomorrow I won't be there. I'll be home, with Maya. One therapy (OT) here in the morning, followed by a drive in Manhattan for therapy #2 (speech & feeding). I have two appointments for Maya (ENT & developmental pediatrician) that need to be scheduled, a prescription to pick up at her pediatrician's office, and I have to schedule Parker's vet evaluation for his therapy certificate (classes start Sept 12!). I have papers to sign and fax to get the agency for Maya's speech & feeding therapy agency changed, again, and will then be a thorn in the coordinator's side until I know that it's done. The car will need to be moved (alternate side, ugh) and the dog walked. Cleaning out the house will continue, and various projects will be done. I'll think about things to blog about (and probably forget them). I'll be hoping that Maya's croup-iness subsides, and that I won't need to take her in to see the pediatrician. Maybe we'll have time to hit the playground before the first therapy, maybe not.
I wasn't the stay at home mom type.
I worked for the first year after Maya was born, and stopped only because of her special needs. It was nearly impossible to coordinate appointments, arguing with doctor's offices and navigating through the Early Intervention process, from school. Once therapies were seriously starting, it was hard for me to keep up with what was going on, and the grading and planning that had to be done at home were overwhelming. I was barely keeping my head above water.
But I really didn't want to leave work.
Like it was yesterday, I can remember sitting in the meeting when I would announce to my team that I wouldn't be returning, and I still couldn't get through it without tearing up. "This isn't what I want to do, but it's what needs to be done, for now", I said. And at that point I kind of thought that I would only need to leave for a year---study the therapists, help Maya catch up on her milestones, and bam, I'd be right back. No problem.
Not quite.
So as the back to school buzz crescendos this week, there's a part of me that is bitterly wistful, that's very "Hey! What about me? I want to be there too! I was a good teacher! Don't forget me!"
And this isn't to say that working out of the home is better than being a stay at home mom, and it's not to say that staying at home is better than working. It's just to paint the picture of how much I loved my work.
If you asked me 3 years ago if I wanted to be a stay-at-home mom, I would have said no.
But, as it turns out, I love staying at home with Maya too. I like playing with her, the playground is fun, it's fun to watch her discover new things (like the decks of cards that she's totally obsessed with now, or her crush on Elmo) and make new sounds (da-da-da and nananana). I love working with her and Parker, and drawing at the table. I love the way she makes me laugh, like today when she decided that she needed some iced coffee, just like dad & mom:
If you asked me 3 years ago if I wanted to be a mom to a child with special needs, I would have said no.
But therapies are just a normal part of our days now, and the therapists have become the friends that I really chat with throughout the day (other than my sister). I love the way they all love Maya, and she makes them laugh, and I like learning from them. The appointments can be downers, but we make the best of them by choosing really amazing doctors and taking pictures, and videos.
Without special needs, I wouldn't know about the amazing parents in the special needs world, the women in the support group that I've met.
Without special needs, I might have missed celebrating all of the little things (like new sounds). I'm apathetic by nature, and I might have just "yep, she makes noise. kids make noise. whoop-de-doo"-d right past it all.
Without special needs, we wouldn't have Parker. And his therapy classes start in September . . . who knows where that volunteer work will lead.
This isn't what I thought I wanted . . . but I'm so happy where I am. A few months ago things were pretty dark, and I wondered about how people come to terms with parenting their children with special needs---how to get past the sadness, the mourning, the wishing-things-were-different.
But I'm past it. For now, anyway. I know it's cyclical, and I know sadness will creep in from time to time (sometimes in a crushing way). But for a while now, it's just been good.
So, KIPP family (and teacher folks in general), I'll miss you all tomorrow, and I'll miss being a part of the energy. But I wouldn't trade places with any of you, either :)
(PS---Happy 1st day of Kindergarten tomorrow to my nephew Collin!)
But tomorrow I won't be there. I'll be home, with Maya. One therapy (OT) here in the morning, followed by a drive in Manhattan for therapy #2 (speech & feeding). I have two appointments for Maya (ENT & developmental pediatrician) that need to be scheduled, a prescription to pick up at her pediatrician's office, and I have to schedule Parker's vet evaluation for his therapy certificate (classes start Sept 12!). I have papers to sign and fax to get the agency for Maya's speech & feeding therapy agency changed, again, and will then be a thorn in the coordinator's side until I know that it's done. The car will need to be moved (alternate side, ugh) and the dog walked. Cleaning out the house will continue, and various projects will be done. I'll think about things to blog about (and probably forget them). I'll be hoping that Maya's croup-iness subsides, and that I won't need to take her in to see the pediatrician. Maybe we'll have time to hit the playground before the first therapy, maybe not.
I wasn't the stay at home mom type.
I worked for the first year after Maya was born, and stopped only because of her special needs. It was nearly impossible to coordinate appointments, arguing with doctor's offices and navigating through the Early Intervention process, from school. Once therapies were seriously starting, it was hard for me to keep up with what was going on, and the grading and planning that had to be done at home were overwhelming. I was barely keeping my head above water.
But I really didn't want to leave work.
Like it was yesterday, I can remember sitting in the meeting when I would announce to my team that I wouldn't be returning, and I still couldn't get through it without tearing up. "This isn't what I want to do, but it's what needs to be done, for now", I said. And at that point I kind of thought that I would only need to leave for a year---study the therapists, help Maya catch up on her milestones, and bam, I'd be right back. No problem.
Not quite.
So as the back to school buzz crescendos this week, there's a part of me that is bitterly wistful, that's very "Hey! What about me? I want to be there too! I was a good teacher! Don't forget me!"
And this isn't to say that working out of the home is better than being a stay at home mom, and it's not to say that staying at home is better than working. It's just to paint the picture of how much I loved my work.
If you asked me 3 years ago if I wanted to be a stay-at-home mom, I would have said no.
But, as it turns out, I love staying at home with Maya too. I like playing with her, the playground is fun, it's fun to watch her discover new things (like the decks of cards that she's totally obsessed with now, or her crush on Elmo) and make new sounds (da-da-da and nananana). I love working with her and Parker, and drawing at the table. I love the way she makes me laugh, like today when she decided that she needed some iced coffee, just like dad & mom:
If you asked me 3 years ago if I wanted to be a mom to a child with special needs, I would have said no.
But therapies are just a normal part of our days now, and the therapists have become the friends that I really chat with throughout the day (other than my sister). I love the way they all love Maya, and she makes them laugh, and I like learning from them. The appointments can be downers, but we make the best of them by choosing really amazing doctors and taking pictures, and videos.
Without special needs, I wouldn't know about the amazing parents in the special needs world, the women in the support group that I've met.
Without special needs, I might have missed celebrating all of the little things (like new sounds). I'm apathetic by nature, and I might have just "yep, she makes noise. kids make noise. whoop-de-doo"-d right past it all.
Without special needs, we wouldn't have Parker. And his therapy classes start in September . . . who knows where that volunteer work will lead.
This isn't what I thought I wanted . . . but I'm so happy where I am. A few months ago things were pretty dark, and I wondered about how people come to terms with parenting their children with special needs---how to get past the sadness, the mourning, the wishing-things-were-different.
But I'm past it. For now, anyway. I know it's cyclical, and I know sadness will creep in from time to time (sometimes in a crushing way). But for a while now, it's just been good.
So, KIPP family (and teacher folks in general), I'll miss you all tomorrow, and I'll miss being a part of the energy. But I wouldn't trade places with any of you, either :)
(PS---Happy 1st day of Kindergarten tomorrow to my nephew Collin!)
Wednesday, August 25, 2010
Blood draw? No big deal.
We had another genetic test done today, this time at the Children's Hospital at Montefiore. It will take several weeks for it to be processed through CHOP (Children's Hospital of Philadelphia, kind of the mecca for genetics stuff) and I'm not overly concerned with what the results are----however it comes back won't really change our daily lives anyway.
The best part of the visit was the blood draw (I know, what? Drawing blood from a 2 year old was the best part?!). . Dave decided to video tape it, not knowing how it would go, and it turned out that she didn't cry. At all. No, really. It was amazing. She whimpered, her face crumpled---I whispered to her and Dave distracted and that was it. See for yourself (and enjoy the captions):
Disclaimer #1: If you only see a white square below, with a play button, click on the play button and the video will appear.
Disclaimer #2: Dave thinks he sounds totally ridiculous---I think he sounds like a great dad who's trying to distract his 2 year old during a blood draw. So don't mock the voice :)
The best part of the visit was the blood draw (I know, what? Drawing blood from a 2 year old was the best part?!). . Dave decided to video tape it, not knowing how it would go, and it turned out that she didn't cry. At all. No, really. It was amazing. She whimpered, her face crumpled---I whispered to her and Dave distracted and that was it. See for yourself (and enjoy the captions):
Disclaimer #1: If you only see a white square below, with a play button, click on the play button and the video will appear.
Disclaimer #2: Dave thinks he sounds totally ridiculous---I think he sounds like a great dad who's trying to distract his 2 year old during a blood draw. So don't mock the voice :)
Friday, April 9, 2010
Let's do "Welcome to Holland"
When you become a parent of a special needs child, everyone talks about "Welcome to Holland". I assumed that everyone knew what it was (I read it many years before Maya), but when I mentioned it to Dave a few weeks ago he had never seen it. Here you go:
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved
My two cents:
1. Good, right? My favorite part is the bit about other people going and coming from Italy. I love "Yes, that's where I was supposed to go. That's what I had planned." Yesterday a Facebook friend posted "*Name of child* just walked across the living room." Now, it's not that I want to go knock other people's kids down or anything, but . . . some days it's no sweat to toss out a "hooray!" . . . some days it would get a sigh and walking away from the computer. Some days a few tears. Luckily, those days are the least common. (And that doesn't mean that you should keep your kids' amazing things from me---please, let me know their newest tricks, I really do care and want to be a supportive friend/family member. It's just that sometimes they sting a little.)
2. Do you think that the nation of Holland collectively read this and said "Did this lady just call us slow?" Clearly, they're the "special" kid in this analogy. She calls them slower paced, and the best compliment she can offer is that they have windmills? Do you think that they're bothered that "Welcome to Holland" now is a euphemism for "Now that you're in the special needs world . . ."? I picture some happy couple, tulips on their table, wearing their wooden shoes, reading this in a newspaper when it first came out . . . nodding, nodding . . . and they they would look up and go "wait---what, now?"
Anyway, we have a lot going on over here. A few ideas in the works, but none ready for public discussion yet.
As a side note, Dave thinks more people should comment on the blog. He says that he likes to log in and view the comments, because he wonders who is out there. There must be a good handful of you readers, because the ticker keeps going up, up, up (and I think my mom only view the page like 27 times a day). So whenever you have the urge to comment, just got right ahead :)
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved
My two cents:
1. Good, right? My favorite part is the bit about other people going and coming from Italy. I love "Yes, that's where I was supposed to go. That's what I had planned." Yesterday a Facebook friend posted "*Name of child* just walked across the living room." Now, it's not that I want to go knock other people's kids down or anything, but . . . some days it's no sweat to toss out a "hooray!" . . . some days it would get a sigh and walking away from the computer. Some days a few tears. Luckily, those days are the least common. (And that doesn't mean that you should keep your kids' amazing things from me---please, let me know their newest tricks, I really do care and want to be a supportive friend/family member. It's just that sometimes they sting a little.)
2. Do you think that the nation of Holland collectively read this and said "Did this lady just call us slow?" Clearly, they're the "special" kid in this analogy. She calls them slower paced, and the best compliment she can offer is that they have windmills? Do you think that they're bothered that "Welcome to Holland" now is a euphemism for "Now that you're in the special needs world . . ."? I picture some happy couple, tulips on their table, wearing their wooden shoes, reading this in a newspaper when it first came out . . . nodding, nodding . . . and they they would look up and go "wait---what, now?"
Anyway, we have a lot going on over here. A few ideas in the works, but none ready for public discussion yet.
As a side note, Dave thinks more people should comment on the blog. He says that he likes to log in and view the comments, because he wonders who is out there. There must be a good handful of you readers, because the ticker keeps going up, up, up (and I think my mom only view the page like 27 times a day). So whenever you have the urge to comment, just got right ahead :)
Thursday, March 25, 2010
Two days in pictures, with no transitions between stories, and the worst and longest title ever
So, folks asked about the flier that I mentioned hanging around the neighborhood. I'd love to share it because I got so many responses! The title was "Young neighborhood mom seeks companionship" and no sooner did I hang it up than the emails started pouring in.
:)
Ok, for real, here it is (at Starbucks):
("Attention Parents of Kids with special needs" is the title)
Playing with the new camera has taught me about angles. Here she looks like she's at a park in the middle of a big city:
While here she could be swinging in a much smaller town
But really, there's just one big skinny building, and the shots were a few seconds apart.
Around 7:25 every night, we say "Maya, do you want to watch "Baby Signing Time?" And she does this:
Everyday I wear 3 rings. Last night I made pizza, and before I started kneading the dough I threw the rings in an empty baby food container. This morning when I went to put them on, I found a fourth. One of these things is not like the other . . . (Dave made it pre-work)
Maya tried to feed it a veggie stick.
We're working on veggie sticks in feeding therapy. She wants to do it all by herself (which has varying degrees of success).
(An aside: A few posts back, I mentioned my "throw yourself into the universe" theory (henceforth TYITU), but I haven't had time to extrapolate at all. Way back when I wrote about the not knowing, a few interesting things happened. 1. I was forwarded an article from the Wall Street Journal about a family dealing with a lack of diagnosis for their son, and it brought to light how many people in the country struggle in that limbo situation. 2. In line with TYITU, I emailed the author of the article 3. She responded and pointed me towards an actual organization solely for families of kids who don't have diagnoses (SWAN . . . "syndromes without a name"). That's what the "swan" tag on some of my posts stands for.)
:)
Ok, for real, here it is (at Starbucks):
("Attention Parents of Kids with special needs" is the title)
Speaking of Starbucks, you may have noticed that you can see a giant Starbucks cup in almost all of my stroller pictures. That's a reusable iced coffee cup, and we make the coffee at home. I'm not buying coffee (and disposing of plastic cups) everyday. Here's Maya, and my cup, at the dog run:
Playing with the new camera has taught me about angles. Here she looks like she's at a park in the middle of a big city:
While here she could be swinging in a much smaller town
But really, there's just one big skinny building, and the shots were a few seconds apart.
Around 7:25 every night, we say "Maya, do you want to watch "Baby Signing Time?" And she does this:
Everyday I wear 3 rings. Last night I made pizza, and before I started kneading the dough I threw the rings in an empty baby food container. This morning when I went to put them on, I found a fourth. One of these things is not like the other . . . (Dave made it pre-work)
Maya tried to feed it a veggie stick.
We're working on veggie sticks in feeding therapy. She wants to do it all by herself (which has varying degrees of success).
While I made her breakfast, she went to work unfolding the laundry:
And she subtly tells me to put the camera away.
And she subtly tells me to put the camera away.
(An aside: A few posts back, I mentioned my "throw yourself into the universe" theory (henceforth TYITU), but I haven't had time to extrapolate at all. Way back when I wrote about the not knowing, a few interesting things happened. 1. I was forwarded an article from the Wall Street Journal about a family dealing with a lack of diagnosis for their son, and it brought to light how many people in the country struggle in that limbo situation. 2. In line with TYITU, I emailed the author of the article 3. She responded and pointed me towards an actual organization solely for families of kids who don't have diagnoses (SWAN . . . "syndromes without a name"). That's what the "swan" tag on some of my posts stands for.)
Wednesday, March 10, 2010
The not knowing
I'm not sure how to even begin this without sounding ridiculous and self-indulgent. But I think I will, and if you feel your eyes starting to roll, then skip ahead to a post with pictures or something . . . I won't be offended. But sometimes I learn a lot from reading the blogs of people who are in tough situations, and maybe a look into my processing will help someone else. Or, maybe you're just nosy and like the voyeurism of reading someone's innermost struggles :)
Maya still has no diagnosis for the source of her global developmental delays . . . and I don't like the be dramatic, or feel sorry for myself. Those two things combined have left me in an interesting place over the last year-ish. I haven't had a mental framework for how to interpret her . . . will she grow up to be a "normal" kid with delays, who will just need a little time to catch up . . . maybe start school a year late, or not even that? Or will she be a kid who will need to ride a special bus, go to a special school, and need assistive living when she's older? And I know that everyone wonders what the future will hold for their child, but our situation is, well, a little different.
The not knowing is killer. I hate it. In the beginning, I would go into every dr's appointment (and there were a lot of them) with a swirly mixture of dread and nervous excitement----"Maybe this is when they'll figure out what is wrong----I don't want something big to be wrong----but if you can't tell me that everything is normal, and least tell me what the something wrong is----please don't give me more of the not knowing." But we just gathered more and more handfuls of the not knowing, as tests (cardiac tests, karyotype, genetic screening, MRI) came back normal. And each test that came back normal was rightfully a cause for big celebration (!!!) but a little, teeny tiny, grey voice deep in my head would say "oh, come on already."
I realized a week or so ago that I've been pinballing (that's when you shoot back and forth like the ball in a pinball machine) around through Kubler-Ross's stages of grief (even though I wouldn't necessarily call my thinking grieving, maybe it fits). In any given week, and sometimes on any given day, I would spend time in anger (at the world, at the system, at the doctors, sometimes at Maya), denial (she's just taking her time), depression ( ), and acceptance. And as quickly as I wrapped some sort of acceptance around me, it would slip away a little bit and denial would swoop back in. Although the ratios of time-spent-in-each-place have changed, I've been pinballing for a long time now.
Like 15 months.
At times I've wished for something with a name. At least "Down syndrome" would be a label that people could understand. It's hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn't move (unless the door is left open, and then she crawls with lightening speed). I'm sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I'm not going to launch into a whole "Oh she has delays" speech. I just need a soundbite, something that shows that she's different, I know it, we're able to laugh at ourselves and take things in stride and with grace, and let's move on to chat about something more fun. I'm bite-less.
Anyway, I've realized that some people might feel like they've missed the announcement. Like, wait, I heard Maya is getting a trillion therapies a week---what's wrong with her? Did Dana ever tell you? But there's just been nothing to tell.
Suddenly, now, I can't do the pinballing. I'm so tired of it. So I'm owning the label "special needs" which I really didn't feel comfortable with until last week. I thought that label should be saved for kids who really had special needs, not silly Maya, and then Dave said "Um, she gets like 12 therapies a week, that's special needs". Yeah, I guess so----it doesn't bum me out, I just didn't want to take the label and use it in a "oh, so sad for me, my kid has special needs" kind of way.
So I'm boxing up as much denial as I can, and putting it on a high shelf somewhere, hopefully next to my box of not knowing. I know that I'll still end up looking through both of them from time to time, but they need to be further away. The ambiguity has got to go for now, I need to be in a making-peace-and-moving-on place. And I think I'm getting really close to there.
So the goal of all of this, besides clearing my own head, was to clear the air about where Maya is, and also to let people in a little. I tend to be fairly dry most of the time (in case you haven't noticed), but maybe it's helpful to come clean once in a while.
Maya still has no diagnosis for the source of her global developmental delays . . . and I don't like the be dramatic, or feel sorry for myself. Those two things combined have left me in an interesting place over the last year-ish. I haven't had a mental framework for how to interpret her . . . will she grow up to be a "normal" kid with delays, who will just need a little time to catch up . . . maybe start school a year late, or not even that? Or will she be a kid who will need to ride a special bus, go to a special school, and need assistive living when she's older? And I know that everyone wonders what the future will hold for their child, but our situation is, well, a little different.
The not knowing is killer. I hate it. In the beginning, I would go into every dr's appointment (and there were a lot of them) with a swirly mixture of dread and nervous excitement----"Maybe this is when they'll figure out what is wrong----I don't want something big to be wrong----but if you can't tell me that everything is normal, and least tell me what the something wrong is----please don't give me more of the not knowing." But we just gathered more and more handfuls of the not knowing, as tests (cardiac tests, karyotype, genetic screening, MRI) came back normal. And each test that came back normal was rightfully a cause for big celebration (!!!) but a little, teeny tiny, grey voice deep in my head would say "oh, come on already."
I realized a week or so ago that I've been pinballing (that's when you shoot back and forth like the ball in a pinball machine) around through Kubler-Ross's stages of grief (even though I wouldn't necessarily call my thinking grieving, maybe it fits). In any given week, and sometimes on any given day, I would spend time in anger (at the world, at the system, at the doctors, sometimes at Maya), denial (she's just taking her time), depression ( ), and acceptance. And as quickly as I wrapped some sort of acceptance around me, it would slip away a little bit and denial would swoop back in. Although the ratios of time-spent-in-each-place have changed, I've been pinballing for a long time now.
Like 15 months.
At times I've wished for something with a name. At least "Down syndrome" would be a label that people could understand. It's hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn't move (unless the door is left open, and then she crawls with lightening speed). I'm sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I'm not going to launch into a whole "Oh she has delays" speech. I just need a soundbite, something that shows that she's different, I know it, we're able to laugh at ourselves and take things in stride and with grace, and let's move on to chat about something more fun. I'm bite-less.
Anyway, I've realized that some people might feel like they've missed the announcement. Like, wait, I heard Maya is getting a trillion therapies a week---what's wrong with her? Did Dana ever tell you? But there's just been nothing to tell.
Suddenly, now, I can't do the pinballing. I'm so tired of it. So I'm owning the label "special needs" which I really didn't feel comfortable with until last week. I thought that label should be saved for kids who really had special needs, not silly Maya, and then Dave said "Um, she gets like 12 therapies a week, that's special needs". Yeah, I guess so----it doesn't bum me out, I just didn't want to take the label and use it in a "oh, so sad for me, my kid has special needs" kind of way.
So I'm boxing up as much denial as I can, and putting it on a high shelf somewhere, hopefully next to my box of not knowing. I know that I'll still end up looking through both of them from time to time, but they need to be further away. The ambiguity has got to go for now, I need to be in a making-peace-and-moving-on place. And I think I'm getting really close to there.
So the goal of all of this, besides clearing my own head, was to clear the air about where Maya is, and also to let people in a little. I tend to be fairly dry most of the time (in case you haven't noticed), but maybe it's helpful to come clean once in a while.
Saturday, July 25, 2009
Test results are in
We got the results to Maya's microarray yesterday (a few weeks earlier than planned) and they were totally normal!
The microarray is a genetic test that analyzes the chromosomes to see if any sections are missing (deletions) or repeated (duplications). Microdeletions and duplications can cause many, many different genetic syndromes or disorders, so it's great to hear that everything was normal!
Dave and I were pretty surprised that nothing turned up, since this test casts a wide net looking for issues, and we are happily celebrating the good news.
Please resist the urge to ask "What now?" Within the past yearish, we've gone through so many tests and challenges that it's just nice to dwell in good news, rather than already start looking ahead to which tests could come next.
Now we're just planning to focus on working towards goals (our current goal is pulling up to stand) and pushing her development as best as we can.
I'm sadly looking at my last week working at KIPP (only 3 days left). This week summer school ends, we're looking forward to a vacation in August, and then I'll be working with Maya at home (and working from home as well).
The microarray is a genetic test that analyzes the chromosomes to see if any sections are missing (deletions) or repeated (duplications). Microdeletions and duplications can cause many, many different genetic syndromes or disorders, so it's great to hear that everything was normal!
Dave and I were pretty surprised that nothing turned up, since this test casts a wide net looking for issues, and we are happily celebrating the good news.
Please resist the urge to ask "What now?" Within the past yearish, we've gone through so many tests and challenges that it's just nice to dwell in good news, rather than already start looking ahead to which tests could come next.
Now we're just planning to focus on working towards goals (our current goal is pulling up to stand) and pushing her development as best as we can.
I'm sadly looking at my last week working at KIPP (only 3 days left). This week summer school ends, we're looking forward to a vacation in August, and then I'll be working with Maya at home (and working from home as well).
Tuesday, July 7, 2009
Recent Happenings
Lots of exciting stuff going on with us. Maya outgrew her bathtub:
First basil harvest:
Mommy & Maya went to KIPP's 8th grade advancement ceremony:
We read books:
It had this many parts:
After a few hours of work it looked like this:
Finally, all done:
It's normal to have left over parts, right?
We're rearranging our 3rd bedroom to make it more workable with the new desk, and we're back to work (for summer school, which I'm working at but not teaching) tomorrow!
Guys? Really? This is ridiculous.
I've been gardening. These pics were taken 2ish weeks ago, the plants are way bigger now and yesterday we got our first red tomato!!!
Oodles of basil plants, inside & outside:
Habanero & Jalapeno peppers---they're being attacked by aphids, so I don't know if we'll get any peppers:
Lettuces & Spinach:
Windowsill herb garden:
Tomato plant:
First basil harvest:
Mommy & Maya went to KIPP's 8th grade advancement ceremony:
Maya did a Father's Day craft:
We read books:
And go back to doctor's appointments:
(Maya is having a genetic test called a microarray done. The geneticists still feel like some genetic issue has caused Maya's delays and the test will search for microdeletions or duplications which could have caused a syndrome. Results due in 2ish months.)
We celebrated the 4th of July with a yummy cookout in NJ:
Where Maya enjoyed watermelon and chocolate:
We are getting ready to have a big change in September. For the first time in 8 years, I'm not going to be returning to the classroom. I have super mixed feelings about it, but we've decided that it would be best if I'm home with Maya. It will make it easier to schedule appointments and therapies, and give me more hands-on time to work with her. At the same time, I'm going to miss my KIPP family, and hopefully Maya and I will visit all the time.
I'm not going to take the year off entirely, instead I'm going to be working from home with a grad school that's affiliated with KIPP and TFA, among other schools. I'll be helping to evaluate first year teachers via videos, which is web-based and can be done any time, day or night. So I needed to create a home office, and Dave and I bought a desk at IKEA. Now, I love putting crap together (Really. It's very satisfying to build stuff.) . . . but this was intense! It came in 2 boxes that looked like this:
It had this many parts:
After a few hours of work it looked like this:
Finally, all done:
It's normal to have left over parts, right?
We're rearranging our 3rd bedroom to make it more workable with the new desk, and we're back to work (for summer school, which I'm working at but not teaching) tomorrow!
Monday, April 20, 2009
I should start with something positive . . . we had a fantastic break. We swam, went to the zoo, went to parks, played, etc. Lots of family fun time. All of the doctors were on vacation, which ended up forcing us to have a week without doctors . . . it was annoying not to get anything done while we were off from work, but ended up being lovely. It often strikes me as very sad that we are spending so much of Maya's babyhood driving to every doctor under the sun.
That said, today the doctors were back and so were we. Dave took the day off from work (thanks to the other KIPP teachers who make this possible!) to come with us to the ENT and the neurologist.
1. The ENT checked out Maya and saw that her adenoids were still enlarged. We're going to go ahead with surgery next Thursday, April 30th (her 11 month birthday!) to remove them. It's really hard to decide whether someone else (who can't speak) should have an operation. But we have hopes that she will be able to breathe easier, and that she may progress faster towards eating with the extra breathing space. Currently, her adenoids are obstructing about 70% of the speace that she breathes through, which is a lot. That said, it will obviously be sad and scary to send her into surgery :(
This is what they should look like, if they weren't swollen:
2. Neurologist: The neurologist and his partner were really, really nice. That said, it was stupid to go see them. I had made this appointment by accident (I was supposed to find a developmental pediatrician, not a pediatric neurologist) a few months ago, and decided to keep it because . . . why not? Maybe they would just clear her neurologically and that would be one less thing to worry about? Turns out not so much.
If you went to a proctologist and complained that every time you ate, your stomach hurt, you'd expect them to go in (yikes!) for a look, no? Because looking up people's rear end is what they do. Well, if you take a baby to a neurologist because she doesn't eat and has developmental delays, they want to take a look at her brain. Because looking at brains is what they do. But hearing 2 medical folks suggest a brain MRI (which requires 45 minutes of sedation) after you've just barely wrapped your head around 30 minutes of sedation and surgery next week . . . well, it's not a fun afternoon.
We decided not to do it----there's really no reason to at this time. If some other doctor had suggested seeing a neurologist, we'd follow through, but since I just brought us in there, no. If her therapies don't help, and her 1 year follow-up genetic testing doesn't show anything, and we're still at a stand-still in a few months, maybe then we'll go for tests. But now it seems excessive. And we're so tired of tests and evaluations.
Any specialist that you go to will want to run their specialty's barrage of tests. I was an idiot for not seeing that one coming.
And Maya? Happy as a clam. Giggled like a loon when the neurologist tickled her :)
The highlight of the day ----getting asked our #1 favorite question. The geneticist asked us a while back, and the neurologist asked us again today, as part of their standard questions to Dave and I : "Do you guys have any health problems? Any family history of genetic issues? . . . and, Are you two related?" Fantastic.
That said, today the doctors were back and so were we. Dave took the day off from work (thanks to the other KIPP teachers who make this possible!) to come with us to the ENT and the neurologist.
1. The ENT checked out Maya and saw that her adenoids were still enlarged. We're going to go ahead with surgery next Thursday, April 30th (her 11 month birthday!) to remove them. It's really hard to decide whether someone else (who can't speak) should have an operation. But we have hopes that she will be able to breathe easier, and that she may progress faster towards eating with the extra breathing space. Currently, her adenoids are obstructing about 70% of the speace that she breathes through, which is a lot. That said, it will obviously be sad and scary to send her into surgery :(
This is what they should look like, if they weren't swollen:
2. Neurologist: The neurologist and his partner were really, really nice. That said, it was stupid to go see them. I had made this appointment by accident (I was supposed to find a developmental pediatrician, not a pediatric neurologist) a few months ago, and decided to keep it because . . . why not? Maybe they would just clear her neurologically and that would be one less thing to worry about? Turns out not so much.
If you went to a proctologist and complained that every time you ate, your stomach hurt, you'd expect them to go in (yikes!) for a look, no? Because looking up people's rear end is what they do. Well, if you take a baby to a neurologist because she doesn't eat and has developmental delays, they want to take a look at her brain. Because looking at brains is what they do. But hearing 2 medical folks suggest a brain MRI (which requires 45 minutes of sedation) after you've just barely wrapped your head around 30 minutes of sedation and surgery next week . . . well, it's not a fun afternoon.
We decided not to do it----there's really no reason to at this time. If some other doctor had suggested seeing a neurologist, we'd follow through, but since I just brought us in there, no. If her therapies don't help, and her 1 year follow-up genetic testing doesn't show anything, and we're still at a stand-still in a few months, maybe then we'll go for tests. But now it seems excessive. And we're so tired of tests and evaluations.
Any specialist that you go to will want to run their specialty's barrage of tests. I was an idiot for not seeing that one coming.
And Maya? Happy as a clam. Giggled like a loon when the neurologist tickled her :)
The highlight of the day ----getting asked our #1 favorite question. The geneticist asked us a while back, and the neurologist asked us again today, as part of their standard questions to Dave and I : "Do you guys have any health problems? Any family history of genetic issues? . . . and, Are you two related?" Fantastic.
Wednesday, March 25, 2009
All done!
Our doctor appointments are DONE. Well, for now. Until next Thursday night. Oh, and then April 6th. And 2 on the 20th. And one on the 30th. Oh well. It was a nice celebratory moment while it lasted :)
Today we had physical therapy & occupational therapy evaluations. I thought they were intersting (mostly playing on the floor with different toys, trying different positions). Poor Maya was wiped out by the end . . . it was like baby aerobics).
(Did you know that if you Google "baby aerobics" this terrifying picture comes up?!?!)
The therapists both said that she'll qualify for services based on her delays, but they were impressed with her positive attitude and willingness to keep trying new things. We learned a few new exercise tricks, too :)
New appointments on the horizon:
Thurs, April 2: Normal 10 month pediatrician appointment
Mon, April 6: Meeting with developmental pediatrician to review the results of the 5 evaluations
Today we had physical therapy & occupational therapy evaluations. I thought they were intersting (mostly playing on the floor with different toys, trying different positions). Poor Maya was wiped out by the end . . . it was like baby aerobics).
(Did you know that if you Google "baby aerobics" this terrifying picture comes up?!?!)
The therapists both said that she'll qualify for services based on her delays, but they were impressed with her positive attitude and willingness to keep trying new things. We learned a few new exercise tricks, too :)
New appointments on the horizon:
Thurs, April 2: Normal 10 month pediatrician appointment
Mon, April 6: Meeting with developmental pediatrician to review the results of the 5 evaluations
Subscribe to:
Posts (Atom)