Monday ended with a biopsy and Tuesday began with a blood draw for the whole family. I was starting to think they should have scheduled these things for the very end so the kids wouldn't be too traumatized to even walk into a doctor's office, but I'm sure they have a method to the madness. This added yet another screaming session from restraining them and yet another bandage for Emerson to point to and say in the world's most pathetic voice, "Boo boo!" Dr. Adams had mentioned they would apply a topical numbing cream and he put the orders in, but somehow it got lost and was never done. I do have to say, however, that the staff of Phlembotomy took extra care to get the kids in first and make sure it would be as fast and painless as possible.
When we talked to Dr. Adams on Monday, he mentioned that the opthalmology appointment scheduled for Tuesday was always the roughest part for families. I knew it would be long and frustrating, but we've done many 4-5 hour long opthalmology appointments in the past three years, so I didn't think anything of it. I should have listened.
The appointment started with the usual goofy voices, barking puppets and bouncing teddy bears to get the boys to hold still while the doctors looked at their eyes through thick lenses or tested distance vision. Despite the fact that Emerson was reliably matching the black and white pictures opthalmologists use during our time with his vision teacher, of course he refused to cooperate at the appointment.
They did use the Teller Acuity cards to get an estimate on both boys, which was around 20/400 for both. It's actually better than I predicted for Emerson and it's not legally blind, so that's a start. They said Fionn's vision is at the very, very bottom of what's considered normal for his age range while Emerson is well below the normal range for his age. So in that sense our predictions were right: they both have impaired vision, but Emerson's is worse.
On the down side, both have developed an astigmatism, so we need to better about making Emerson wear his eye glasses and Fionn needs to get a pair as well. Keeping glasses on that wild child is going to be a pain in the a** to say the least. But I guess I should have seen it coming (no pun intended).
During the day, we also learned that two of the doctors, including the main opthalmologist, Dr. Brooks, trained with our local doctor, Monty DelMonty (I'm purposely spelling it wrong in the hopes that he won't decide to google his name one day and discover this post). We are certainly lucky to have such a great doctor in our area and this conversation confirmed that. But I do wish he would work on his bedside manner a bit more. The initial diagnosis appointment for Emerson was a little rough on us and even at our last appointment, Dr. DelMonty was shaking his head over the fact that we hyphenated our kids' last names.
"What are these poor kids going to do when they get older and get married? Hyphenate it again?" I couldn't believe a man named Monty DelMonty was seriously criticizing my naming choices, but I digress. :)
Dr. Brooks was hands down a great doctor and wonderful to talk to. At the wrap up appointment near the end of the day, he was working with a nearly comatose Emerson, so I was doubtful that we could accomplish anything. However, he managed to get him to hold still and even smile by singing the entire "Elmo's World" theme song over and over again in his best Elmo voice (and with no shame despite a door open to the waiting room.)
The rough part came in the middle of the day when they dialated the boys' eyes and then sent us down for photos. You can imagine that if you are already light sensitive, having your eyes dialated and then having your head put in some machine that shines a light at you would be pretty bad. Then add to that being an antsy, hungry, tired three-year-old who must hold still while they meticulously focus the cameras and shoot flashes at your face, and you can see where this all went south very quickly. By the end of his session, all of us were sweating and Emerson was nearly hoarse from the protesting.
We learned from other parents doing opthalmology appointments that day that the photographs weren't nearly as bad for them, but I don't know if that's because their children aren't photosensitive or because my child is just a lot less compliant. Fionn did ok, but he had taken a nap and had to be woken up well before he was ready in order to take the pictures. I expected screaming to ensue, but our biggest issue with him was getting his tired, wobbly head to stay up and his drooping eyelids open.
By the end of the day, we were all beyond exhausted. We dragged our sorry butts back over to the Inn and - by some miracle - managed to get ALL four of us down for a three-hour nap. We woke up and went straight to the community dinner, which gave us a chance to relax and talk to other families.
The information we've gathered during this trip has been extremely intersting and helpful, but the best part has definitely been all the people we've met. (I know, I sound as gushy as someone who just got back from highschool band camp or a coporate retreat to build comraderie, but bear with me.)
While we were at the opthalmologist, we heard from the nurses that there was another family whose four-month-old son was recently diagnosed with albinism in the room next to ours. We managed to track them down just before they left, so we talked over lunch. Their little boy was scrumptious and it felt great to talk to someone else who can relate to our concerns and questions!
We've also met so many great families at the Inn, especially during our many hours in the main playroom. At first I wasn't sure what the etiquette would be - I mean, I certainly didn't want to walk around saying, "So, what are you in for?" I figured many families wouldn't want to talk about it, but I soon discovered I was wrong. Most conversations went very quickly to that subject, but I have to say I found talking about the boy's issues with these families therapeutic rather than annoying. Even though the issues vary widely and run the whole gamut from minor to life-threatening, I think we all shared a common thread. We had our world turned upside down, even if only for a short time. We've felt vulnerable, helpless, and frustrated. And we've all fallen head over heels in love with these tiny people we never expected to be in our lives.
We've met children with Joubert's syndrome, digestive issues, a brain tumor, fluctuating hearing loss, vision problems, etc. In only a few short days we were wishing each other good luck as we headed out for the morning, waving at each other in the halls of the hospital, comparing notes on appointments, and sitting down to dinner together at night. I looked on this trip as a chance to help science while getting some sight-seeing in, but I don't even care that we've only been downtown once. It's a strange little microcosm of the world, but I'm certainly going to miss it when we leave Thursday night.
Wednesday, December 2, 2009
Tuesday, December 1, 2009
Travel Log Part Two - Manic Monday
Anyone who knows us knows that we are not a morning family - so you can imagine our terror when we reviewed the schedule and realized we had to report to Admissions at 7:45am. By the time we got all four of us up, dressed, fed and out the door, we were a...tad...late. Luckily, we quickly realized that they pad appointments with plenty of time for just such occasions.
It was mainly a lot of paperwork and the Admissions playroom wasn't open yet, so I was grateful for the bag of toys we brought with us. (For other parents, the Admissions playroom is open to any patient and is FULL of great stuff. The pediatric department also has a playroom, but ophthalmology doesn't, so come prepared.)
After Admissions, we reported to Pediatrics, where they took vital signs and the screaming commenced. This part wasn't painful, of course, but trying to restrain my children is akin to murder. Eventually we were introduced to Dr. Adams, the man in charge of the study and one of the nicest people we have ever met.
He brought us into a small room to do an interview/medical history and then explained more about the study. What impressed us most was his willingness to stop and answer all our questions patiently and completely. In fact, every specialist we've met the past couple of days has been wonderful - patient, knowledgeable, personable. We've talked with many other patients visiting the NIH for various reasons and they've all said the same thing: Wouldn't it be great if all hospitals could be like this? Wouldn't it be amazing if all doctors treated their patients like people instead of the next number in a long line? If only...
One of the most interesting things we learned from Dr. Adams is that researchers are on the verge of making gene therapy for people with albinism a reality. They are working on ways to trigger pigment production in the cells and the treatment may be ready "in the boys' near future." Most likely it will be used for creating pigment in the eyes to reduce photosensitivity and possibly improve vision, although treating the skin may also be a reality for people who have a lot of sun exposure (such as people with albinism in African countries).
Once the treatment is ready, it will be tested on adults first, but he and the ophthalmologist, Dr. Brooks, assured us that it would become available to children soon after. We've heard about this treatment before, but I guess I didn't comprehend how close they truly are to making it happen.
Before breaking for lunch, Dr. Adams sent us down the hall for medical photographs of both boys. A quiet older man met us at the door and led us into a tiny photography studio cluttered with lights and equipment. The whole experience was easy enough, but I found it a little unsettling nonetheless. Something about the combination of flashing lights, a background of graphs and numbers, and the fact that both boys had to stand there in nothing but their underwear made it feel like Glamour Shots meets police mug shots meets autopsy photos. Weird.
At the end, the kind man offered to take a nice family photo in front of a normal background. He even took down our address so he could mail us the result, but somehow I doubt it will be Christmas card worthy. (Not because of his skill level, just the fact that the boys never look at the camera at the same time and we were a little disheveled from a long day.)
After lunch, Dr. Adams applied some numbing cream to the site of the biopsies and finished the interview. Emerson, unfortunately, found a way to smack his head and then - after a good cry - passed out in my arms. Dr. Adams used this rare quiet time to do a brief physical exam, including pulling down his pants to inspect his scrotum. He left to get some paperwork and I leaned over and whispered to a still-sleeping Emerson, "Don't ever let a strange man touch your balls while you're sleeping ever again." Robbie nodded and chimed in, "And that's why you should never join a frat."
When we were done laughing at our own hilarity, we took a few minutes to enjoy the peace and quiet of both boys sleeping (Fionn had nursed himself to sleep during all this). At one point, I whispered to Robbie, "It's so nice when they're quiet like this." And just as I finished my sentence, little Fionn let out a loud fart, sending us both into fits of giggles again. Yes, I'm afraid having two boys has finally corrupted me.
Since Fionn of course woke up first, he and Robbie went with the doctor to another room to do the biopsy. The process involved punching out a tiny circle of skin on the surface of their arms so that those cells could be grown and studied later on. It's definitely the worst part of the entire study, but it's also the most important.
Despite being all the way down the hall and behind two closed doors, I could hear Fionn screaming the entire time. Not from the procedure, mind you, just from being restrained for that long. The actual process should be painless due to the cream, but it's difficult to really know since neither child can talk. God I hope it was painless.
Poor Emerson fell asleep with a bruised head and woke up just as they did his biopsy. The worst part for him was the bandage since he has sensory issues to begin with. I thought his improving speech would help since I could at least explain to him that it would be over soon and we'd get a treat, etc. But along with speech comprehension comes speech expression. After it was all over, he kept looking at his bandage every once in a while and whimpering "Mama, boo boo" over and over again. Do you hear that thumping? It's my heart being used a punching bag.
Robbie and I talked a lot about how hard it has been to put the kids through all the poking and prodding, but what has hit us hardest is the thought that many parents watch their kids go through MUCH worse procedures for MUCH more dire circumstances all the time. How they get through it is beyond my comprehension, truly.
The rest of the night was spent traveling to downtown Bethesda for dinner. We were all grateful for some fresh air and the boys were excited to do the train again. We chose a nice Indian restaurant and then immediately regretted it. We've been desperately clinging to the idea that our family of four is still capable of eating at a nice restaurant, so we keep trying. And by the end of the meal, we have broken a sweat, caused enough of a mess to warrant a 30% tip, and only wolfed down our food in rare spare moments between entertaining both kids and trying to get them to eat something - ANYTHING. As this scene unfolded yet again, I sensed something different in the air...it was our spirits breaking.
Robbie looked at me with exhausted eyes and asked if I was interested in doing the free community dinner at the Children's Inn the next day. We had skipped it the previous night because we wanted to be out on the town. Plus, we felt a little strange taking a charity meal since our kids were being studied, not receiving treatment for some horrible disease. But it was becoming rapidly clear that a night in would be a good idea for everyone, so I replied, "Definitely. What about you?"
He heaved a sigh. "Definitely."
And with that, we bid adieu to the end of an era. Our nice nights out are going to be dinner in, takeout, or cheesy kid-friendly chains for the next three years.
Yes, that era went out...not with a bang, but a whimper.
It was mainly a lot of paperwork and the Admissions playroom wasn't open yet, so I was grateful for the bag of toys we brought with us. (For other parents, the Admissions playroom is open to any patient and is FULL of great stuff. The pediatric department also has a playroom, but ophthalmology doesn't, so come prepared.)
After Admissions, we reported to Pediatrics, where they took vital signs and the screaming commenced. This part wasn't painful, of course, but trying to restrain my children is akin to murder. Eventually we were introduced to Dr. Adams, the man in charge of the study and one of the nicest people we have ever met.
He brought us into a small room to do an interview/medical history and then explained more about the study. What impressed us most was his willingness to stop and answer all our questions patiently and completely. In fact, every specialist we've met the past couple of days has been wonderful - patient, knowledgeable, personable. We've talked with many other patients visiting the NIH for various reasons and they've all said the same thing: Wouldn't it be great if all hospitals could be like this? Wouldn't it be amazing if all doctors treated their patients like people instead of the next number in a long line? If only...
One of the most interesting things we learned from Dr. Adams is that researchers are on the verge of making gene therapy for people with albinism a reality. They are working on ways to trigger pigment production in the cells and the treatment may be ready "in the boys' near future." Most likely it will be used for creating pigment in the eyes to reduce photosensitivity and possibly improve vision, although treating the skin may also be a reality for people who have a lot of sun exposure (such as people with albinism in African countries).
Once the treatment is ready, it will be tested on adults first, but he and the ophthalmologist, Dr. Brooks, assured us that it would become available to children soon after. We've heard about this treatment before, but I guess I didn't comprehend how close they truly are to making it happen.
Before breaking for lunch, Dr. Adams sent us down the hall for medical photographs of both boys. A quiet older man met us at the door and led us into a tiny photography studio cluttered with lights and equipment. The whole experience was easy enough, but I found it a little unsettling nonetheless. Something about the combination of flashing lights, a background of graphs and numbers, and the fact that both boys had to stand there in nothing but their underwear made it feel like Glamour Shots meets police mug shots meets autopsy photos. Weird.
At the end, the kind man offered to take a nice family photo in front of a normal background. He even took down our address so he could mail us the result, but somehow I doubt it will be Christmas card worthy. (Not because of his skill level, just the fact that the boys never look at the camera at the same time and we were a little disheveled from a long day.)
After lunch, Dr. Adams applied some numbing cream to the site of the biopsies and finished the interview. Emerson, unfortunately, found a way to smack his head and then - after a good cry - passed out in my arms. Dr. Adams used this rare quiet time to do a brief physical exam, including pulling down his pants to inspect his scrotum. He left to get some paperwork and I leaned over and whispered to a still-sleeping Emerson, "Don't ever let a strange man touch your balls while you're sleeping ever again." Robbie nodded and chimed in, "And that's why you should never join a frat."
When we were done laughing at our own hilarity, we took a few minutes to enjoy the peace and quiet of both boys sleeping (Fionn had nursed himself to sleep during all this). At one point, I whispered to Robbie, "It's so nice when they're quiet like this." And just as I finished my sentence, little Fionn let out a loud fart, sending us both into fits of giggles again. Yes, I'm afraid having two boys has finally corrupted me.
Since Fionn of course woke up first, he and Robbie went with the doctor to another room to do the biopsy. The process involved punching out a tiny circle of skin on the surface of their arms so that those cells could be grown and studied later on. It's definitely the worst part of the entire study, but it's also the most important.
Despite being all the way down the hall and behind two closed doors, I could hear Fionn screaming the entire time. Not from the procedure, mind you, just from being restrained for that long. The actual process should be painless due to the cream, but it's difficult to really know since neither child can talk. God I hope it was painless.
Poor Emerson fell asleep with a bruised head and woke up just as they did his biopsy. The worst part for him was the bandage since he has sensory issues to begin with. I thought his improving speech would help since I could at least explain to him that it would be over soon and we'd get a treat, etc. But along with speech comprehension comes speech expression. After it was all over, he kept looking at his bandage every once in a while and whimpering "Mama, boo boo" over and over again. Do you hear that thumping? It's my heart being used a punching bag.
Robbie and I talked a lot about how hard it has been to put the kids through all the poking and prodding, but what has hit us hardest is the thought that many parents watch their kids go through MUCH worse procedures for MUCH more dire circumstances all the time. How they get through it is beyond my comprehension, truly.
The rest of the night was spent traveling to downtown Bethesda for dinner. We were all grateful for some fresh air and the boys were excited to do the train again. We chose a nice Indian restaurant and then immediately regretted it. We've been desperately clinging to the idea that our family of four is still capable of eating at a nice restaurant, so we keep trying. And by the end of the meal, we have broken a sweat, caused enough of a mess to warrant a 30% tip, and only wolfed down our food in rare spare moments between entertaining both kids and trying to get them to eat something - ANYTHING. As this scene unfolded yet again, I sensed something different in the air...it was our spirits breaking.
Robbie looked at me with exhausted eyes and asked if I was interested in doing the free community dinner at the Children's Inn the next day. We had skipped it the previous night because we wanted to be out on the town. Plus, we felt a little strange taking a charity meal since our kids were being studied, not receiving treatment for some horrible disease. But it was becoming rapidly clear that a night in would be a good idea for everyone, so I replied, "Definitely. What about you?"
He heaved a sigh. "Definitely."
And with that, we bid adieu to the end of an era. Our nice nights out are going to be dinner in, takeout, or cheesy kid-friendly chains for the next three years.
Yes, that era went out...not with a bang, but a whimper.
Monday, November 30, 2009
Travel Log Part One
There are several reasons why I should be fast asleep right now and several reasons why I woke up and can't sleep right now - so I thought I'd use this chance to write a short "wearing no contacts at 2am but this is my only shot at the computer with all the work Robbie's trying to squeeze in" kind of post. (I'll try not to be too heavy on the details, but I also want other albinism families considering this study to get a sense of what it's like.)
We arrived in DC yesterday after a mercifully short flight and quickly discovered we should have packed lighter jackets. Ah, 56 degrees is bliss.
Most of the day was spent waiting for the shuttle, getting to the National Institute of Health where we were screened and I.D.-ed (is that a verb?), and then settling into our new home at the Children's Inn. The campus is beautiful and the Inn is a humbling example of the depths of human kindness and suffering. This is the place where children undergoing treatments for cancer or involved in studies for genetic conditions stay with their families. Everything is free to the families, including shuttle transportation, access to computers and long-distance calls, weekly dinners, family activities, etc. And the facilities offer full use of high-end kitchens, playrooms, game rooms, etc. They try to make it a home away from home, but it's more like a little Utopian community.
Of course, we are constantly reminded of how fragile and often unfair life is as well. During the shuttle ride up here, I met a woman and her family who have been coming here every other year for years because their daughter has early-onset schizophrenia. I tried to imagine how hard it would be to go several years thinking you had the daughter of your dreams...and then one day your teenager is hearing voices and you're faced with the reality that you'll be taking care of her the rest of her life.
Later, as I flipped through a copy of Parenting magazine left sitting in the communal kitchen, I came across an ad that featuring a beaming little boy and the headline: "Now I get TWO cakes every year - one for my birthday, and one for the day my cancer went away!" The contact information for the drug company had been carefully cut out.
At one point, I mentioned the family affected by schizophrenia to Robbie and he nodded. "I have a feeling we're going to leave this week with a lot of perspective," he said.
I couldn't agree more.
One day into our trip, there are already several highlights. For us, they would include things like meeting many great people and seeing the National Mall at night. For Emerson and Fionn, they include a magical day full of endless escalators, elevators, moving walkways, planes, buses, trains, and even some crazy two-story high airport shuttles that looked better suited to driving over the surface of the moon.
I have a huge passion for traveling, but I have to say that despite the many inconveniences of traveling with small children, seeing the experience through their eyes only heightens the excitement. During the shuttle ride to the NIH, for example, the windows were so large that Emerson could see cars driving by on the freeway for the first time in his life. Every car, SUV and truck that passed was another thrilling adventure!
As we rode the metro downtown, I watched his eyes get bigger and bigger the faster the train moved. From his perspective, I realized the tunnel streaming by and the pulse of lights did look a lot like hyper-drive in some space movie. Oh, and don't even get me started on the Christmas lights. At one point he fell asleep in the stroller, only to wake up an hour later on a street filled with lighted trees and cars rushing by. We were walking along in silence and then suddenly his head pops up and he shouts "OH WOW!!!"
Priceless.
Ok, now I should really try to get to sleep. We have a long day of testing ahead of us, so wish us happy children and good hospital food.
We arrived in DC yesterday after a mercifully short flight and quickly discovered we should have packed lighter jackets. Ah, 56 degrees is bliss.
Most of the day was spent waiting for the shuttle, getting to the National Institute of Health where we were screened and I.D.-ed (is that a verb?), and then settling into our new home at the Children's Inn. The campus is beautiful and the Inn is a humbling example of the depths of human kindness and suffering. This is the place where children undergoing treatments for cancer or involved in studies for genetic conditions stay with their families. Everything is free to the families, including shuttle transportation, access to computers and long-distance calls, weekly dinners, family activities, etc. And the facilities offer full use of high-end kitchens, playrooms, game rooms, etc. They try to make it a home away from home, but it's more like a little Utopian community.
Of course, we are constantly reminded of how fragile and often unfair life is as well. During the shuttle ride up here, I met a woman and her family who have been coming here every other year for years because their daughter has early-onset schizophrenia. I tried to imagine how hard it would be to go several years thinking you had the daughter of your dreams...and then one day your teenager is hearing voices and you're faced with the reality that you'll be taking care of her the rest of her life.
Later, as I flipped through a copy of Parenting magazine left sitting in the communal kitchen, I came across an ad that featuring a beaming little boy and the headline: "Now I get TWO cakes every year - one for my birthday, and one for the day my cancer went away!" The contact information for the drug company had been carefully cut out.
At one point, I mentioned the family affected by schizophrenia to Robbie and he nodded. "I have a feeling we're going to leave this week with a lot of perspective," he said.
I couldn't agree more.
One day into our trip, there are already several highlights. For us, they would include things like meeting many great people and seeing the National Mall at night. For Emerson and Fionn, they include a magical day full of endless escalators, elevators, moving walkways, planes, buses, trains, and even some crazy two-story high airport shuttles that looked better suited to driving over the surface of the moon.
I have a huge passion for traveling, but I have to say that despite the many inconveniences of traveling with small children, seeing the experience through their eyes only heightens the excitement. During the shuttle ride to the NIH, for example, the windows were so large that Emerson could see cars driving by on the freeway for the first time in his life. Every car, SUV and truck that passed was another thrilling adventure!
As we rode the metro downtown, I watched his eyes get bigger and bigger the faster the train moved. From his perspective, I realized the tunnel streaming by and the pulse of lights did look a lot like hyper-drive in some space movie. Oh, and don't even get me started on the Christmas lights. At one point he fell asleep in the stroller, only to wake up an hour later on a street filled with lighted trees and cars rushing by. We were walking along in silence and then suddenly his head pops up and he shouts "OH WOW!!!"
Priceless.
Ok, now I should really try to get to sleep. We have a long day of testing ahead of us, so wish us happy children and good hospital food.
Monday, November 16, 2009
School Daze.... or "An Extremely Detailed Post Only Suitable for the Most Committed of Readers"
This morning I bent over Emerson's sleeping bulk and whispered, "Emerson, we need to get up early this morning." One puffy eye slid open, so I continued. "Guess where we are going? Preschool!!" He was curious but, as usual, took his time to push away the deep weight of sleep. Fionn, meanwhile, shot up and began to crawl around with his characteristic morning energy.
All the way downstairs I sung our new theme song, "Preschool Musical" compliments of Sesame Street. Today we were visiting what will soon be Emerson's new preschool class, in the hopes that a couple hours of introduction will ward off a nuclear meltdown when I drop him off the first day. Considering that lately I can't even go upstairs without causing him to tear his hair out and scream at the top of his lungs, "MAAAAAAAAAMAAAAAA!!!" this seems doubtful. The teacher assured me that if he had several days of tears, he would not be the first, so I'm just praying he will at least settle down quickly.
A few weeks ago, the whole family attended the preschool open house. Robbie doesn't get to be part of school, so the boys and I enjoyed showing him our routines and introducing him to the various teachers. Then we took a tour of the building and learned that the entire school is devoted to Early Intervention and Head Start (which is impressive considering how big it is). Emerson began attending the EI program once a week as an infant since he had a medical diagnosis, then moved on to two times a week in the toddler program, and now half days for three years in the EI preschool class.
Even though we've been attending for three years already, I learned a lot on our tour. There are several gyms, music rooms and a little library where they check out books once a week. Each classroom has a main teacher, two or three parapros, a physical therapist, speech therapist and an occupational therapist. There is also a bathroom in each classroom where the teachers help to potty train them and brush their teeth. They are served both breakfast and lunch (although being vegetarians I will have to pack his meals. But still - someone ELSE has to make him eat it!) We also learned we will get report cards and have to attend parent-teachers' conference.
But the bit that nearly dropped me to the floor - a bus will pull up to our front door to take him to and from school each day! I guess I had imagined preschool to be like the toddler program except a little longer. Instead, I'm realizing we are knee deep in the school years already.
I have to admit I'm a heartless bitch because none of this makes me wistful for Emerson to be a baby again. I don't tear up at the thought of being away from him for hours a day. After being in charge of his every movement 24 hours a day, seven days a week for most of the last few years, the idea that someone else will help me raise him is better than winning the lottery! The only thing that makes me choke up a bit is the image of this tiny person sitting on a giant school bus. Not enough to keep him from riding it mind you, but it's definitely something we need to ease into.
When we arrived for today's warm-up session, Emerson bounded into school with excitement and energy. That is, until we went to his new classroom instead of our usual room. For the first few minutes of group time he pouted and kicked his legs, but by the time we sung "Mat Man," he was starting to thaw.
The idea that Emerson is in a class only with other special needs kids has been a touchy subject in our house, but seeing the classroom in action at least assured me if not Robbie that it is the right place for him. The kids in the class have varying degrees of special needs, most of which aren't obvious to the casual observer, so I think there is plenty Emerson can learn from them. I also love that the classroom makeup looks straight out of a Benetton ad, with every ethnicity (including Pacific Islander) represented. Gotta love Ann Arbor.
During our visit, I made several mental notes about things to bring up at the IEP meeting this Friday (i.e. he needs to sit at the front so he can see, he needs a parapro to keep an eye on him during outside time so he doesn't tumble off a wayward step, etc.) and I made notes for myself (i.e. always send a thick coat, buy a bento box for lunch, etc.). So now I'm feeling much more prepared and ready to face the adventures ahead.
In the meantime, I informed all the teachers that Robbie was going to make his famous chocolate chip cookies for our IEP meeting, so hopefully that will win us some brownie points as we enter into negotiations. I expect the meeting to go smoothly, but there are a couple of issues (like getting fluorescent bulb jackets for all the classroom lights to cut down on eye strain) that will take some hashing out.
Now I just need to inform Robbie that he is going to bake his famous chocolate chip cookies...
All the way downstairs I sung our new theme song, "Preschool Musical" compliments of Sesame Street. Today we were visiting what will soon be Emerson's new preschool class, in the hopes that a couple hours of introduction will ward off a nuclear meltdown when I drop him off the first day. Considering that lately I can't even go upstairs without causing him to tear his hair out and scream at the top of his lungs, "MAAAAAAAAAMAAAAAA!!!" this seems doubtful. The teacher assured me that if he had several days of tears, he would not be the first, so I'm just praying he will at least settle down quickly.
A few weeks ago, the whole family attended the preschool open house. Robbie doesn't get to be part of school, so the boys and I enjoyed showing him our routines and introducing him to the various teachers. Then we took a tour of the building and learned that the entire school is devoted to Early Intervention and Head Start (which is impressive considering how big it is). Emerson began attending the EI program once a week as an infant since he had a medical diagnosis, then moved on to two times a week in the toddler program, and now half days for three years in the EI preschool class.
Even though we've been attending for three years already, I learned a lot on our tour. There are several gyms, music rooms and a little library where they check out books once a week. Each classroom has a main teacher, two or three parapros, a physical therapist, speech therapist and an occupational therapist. There is also a bathroom in each classroom where the teachers help to potty train them and brush their teeth. They are served both breakfast and lunch (although being vegetarians I will have to pack his meals. But still - someone ELSE has to make him eat it!) We also learned we will get report cards and have to attend parent-teachers' conference.
But the bit that nearly dropped me to the floor - a bus will pull up to our front door to take him to and from school each day! I guess I had imagined preschool to be like the toddler program except a little longer. Instead, I'm realizing we are knee deep in the school years already.
I have to admit I'm a heartless bitch because none of this makes me wistful for Emerson to be a baby again. I don't tear up at the thought of being away from him for hours a day. After being in charge of his every movement 24 hours a day, seven days a week for most of the last few years, the idea that someone else will help me raise him is better than winning the lottery! The only thing that makes me choke up a bit is the image of this tiny person sitting on a giant school bus. Not enough to keep him from riding it mind you, but it's definitely something we need to ease into.
When we arrived for today's warm-up session, Emerson bounded into school with excitement and energy. That is, until we went to his new classroom instead of our usual room. For the first few minutes of group time he pouted and kicked his legs, but by the time we sung "Mat Man," he was starting to thaw.
The idea that Emerson is in a class only with other special needs kids has been a touchy subject in our house, but seeing the classroom in action at least assured me if not Robbie that it is the right place for him. The kids in the class have varying degrees of special needs, most of which aren't obvious to the casual observer, so I think there is plenty Emerson can learn from them. I also love that the classroom makeup looks straight out of a Benetton ad, with every ethnicity (including Pacific Islander) represented. Gotta love Ann Arbor.
During our visit, I made several mental notes about things to bring up at the IEP meeting this Friday (i.e. he needs to sit at the front so he can see, he needs a parapro to keep an eye on him during outside time so he doesn't tumble off a wayward step, etc.) and I made notes for myself (i.e. always send a thick coat, buy a bento box for lunch, etc.). So now I'm feeling much more prepared and ready to face the adventures ahead.
In the meantime, I informed all the teachers that Robbie was going to make his famous chocolate chip cookies for our IEP meeting, so hopefully that will win us some brownie points as we enter into negotiations. I expect the meeting to go smoothly, but there are a couple of issues (like getting fluorescent bulb jackets for all the classroom lights to cut down on eye strain) that will take some hashing out.
Now I just need to inform Robbie that he is going to bake his famous chocolate chip cookies...
Tuesday, November 10, 2009
Bring Out Your Crazies
The other day we were in the grocery store - Robbie had Fionn strapped to his chest and I had Emerson in his cart. Robbie, of course, spotted someone we knew in checkout and wandered over to talk to them while I helped some frazzled woman track down canned chilies.
Apparently while Robbie was talking to our friends, some strange older woman interrupted him to start asking questions about Fionn's coloring. As is often the case, as soon as one person dares to be nosy, it opens to floodgates for everyone else in earshot. Robbie tried to make his way back to me, but this woman and a store worker wandered right along with him. I inwardly groaned as I saw them come around the end of the aisle - the woman was staring at Fionn by now and muttering, "That's going to be interesting watching them grow up." Then she spotted Emerson in my cart and her eyes got even wider. We fielded more questions from her and she did more muttering. "It's definitely going to be interesting. Veeeery interesting."
As she left, the store worker started in. When he asked if we have to buy a lot of sunscreen, I took the opportunity. "We sure do. In fact, that reminds me - we are all out. Thanks!" And off we went to the sunscreen aisle (we were in fact out).
When we left the store, I started complaining about the crazies, especially the woman. "Why the hell does she need to tell us it's going to be interesting?' I should have said, 'In case you haven't noticed, we're already three years and two kids into it. We KNOW it's interesting!"
Robbie snorted. "No, what we should have said is, 'Yeah, it will be interesting. I bet all kinds of crazy people are going to interrupt us to ask stupid questions. What do you think we should do if that happens?'"
Ah, hindsight.
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