Clare is home from the hospital. The surgery went well, and the dentists were able to save her tooth. She had a bunch of work done and is doing well mouth-wise. However, she is having a reaction to the anesthesia (which happened after her last surgery in July 2009 as well). Nothing major, just uncomfortable. I was fortunate to get an appointment with the allergist yesterday evening, so now we are going to work on finding out what exactly sets Clare off. Since she is due for a cath within the next year, the cardiologists want us to get to the bottom of this before she goes under anesthesia again.
One more procedure behind us. Thank you for all the prayers!
Friday, February 25, 2011
Tuesday, February 22, 2011
Flying In, Driving Out
I am waiting for Shawn and Clare to return home from their trip to Louisville, Kentucky to see Dr. Mervis. Being that they have a layover in Philadelphia, their flight (of course) is delayed, so I am still waiting for their arrival at home! (No insult to my peeps in Philly, but the airport stinks.)
Dr. Mervis was kind enough to let me conference call in on her chat with Shawn this morning, so I got to hear firsthand the scoop on Clare. Overall, she is doing well and actually scored in the average range as compared to typical children in her verbal and nonverbal reasoning skills (which means she scored quite well as compared to other children with Williams syndrome). When it comes to her spatial skills, however, not so good. Which we expected, knowing Clare as we do. She also is having more trouble than is typical for kids with WS with some language skills. The fact that she is having trouble comes as no surprise since we, her private speech therapist, and her team at school have all noticed that there are some challenges when it comes to language development with Clare. However, it was a surprise to us that this is NOT typical in WS and that Clare is behind in these skills when compared to other children with WS. Definitely something to work on, keep an eye on, and be sure the school knows that it cannot be blown off "just because she has WS." (Not that the school is overlooking it right now, just something to keep in mind when discussing Clare's progress at our next team meeting.) The actual term for Clare's problem is "specific language impairment." Unfortunately, she is about a year too young to administer the actual test for this impairment, but it is certainly something we can work on over the next year and have Clare tested when she visits Dr. Mervis again next February. In the meantime, Dr. Mervis provided some recommendations for what Clare should be working on at home and in school and emphasized that Clare should definitely repeat kindergarten. All in all, I think the visit with Dr. Mervis was successful, but I know I am going to have two very tired people arriving home (hopefully any minute).
We leave at 5:30am tomorrow morning to bring Clare to Children's Hospital Boston for her dental surgery. If all goes as planned, Clare is going to have a tooth extraction, some fillings, x-rays, and a cleaning (what else can they squeeze in dental-wise while she's under anesthesia??). So she will be good to go for another six months. Then Clare and Shawn will stay overnight on the cardiac floor so they can keep an eye out as she recovers from anesthesia. Her surgery is scheduled for 8:30am, so prayers are appreciated!
Dr. Mervis was kind enough to let me conference call in on her chat with Shawn this morning, so I got to hear firsthand the scoop on Clare. Overall, she is doing well and actually scored in the average range as compared to typical children in her verbal and nonverbal reasoning skills (which means she scored quite well as compared to other children with Williams syndrome). When it comes to her spatial skills, however, not so good. Which we expected, knowing Clare as we do. She also is having more trouble than is typical for kids with WS with some language skills. The fact that she is having trouble comes as no surprise since we, her private speech therapist, and her team at school have all noticed that there are some challenges when it comes to language development with Clare. However, it was a surprise to us that this is NOT typical in WS and that Clare is behind in these skills when compared to other children with WS. Definitely something to work on, keep an eye on, and be sure the school knows that it cannot be blown off "just because she has WS." (Not that the school is overlooking it right now, just something to keep in mind when discussing Clare's progress at our next team meeting.) The actual term for Clare's problem is "specific language impairment." Unfortunately, she is about a year too young to administer the actual test for this impairment, but it is certainly something we can work on over the next year and have Clare tested when she visits Dr. Mervis again next February. In the meantime, Dr. Mervis provided some recommendations for what Clare should be working on at home and in school and emphasized that Clare should definitely repeat kindergarten. All in all, I think the visit with Dr. Mervis was successful, but I know I am going to have two very tired people arriving home (hopefully any minute).
We leave at 5:30am tomorrow morning to bring Clare to Children's Hospital Boston for her dental surgery. If all goes as planned, Clare is going to have a tooth extraction, some fillings, x-rays, and a cleaning (what else can they squeeze in dental-wise while she's under anesthesia??). So she will be good to go for another six months. Then Clare and Shawn will stay overnight on the cardiac floor so they can keep an eye out as she recovers from anesthesia. Her surgery is scheduled for 8:30am, so prayers are appreciated!
Saturday, February 12, 2011
Surgery Scheduled
Clare's dental surgery is scheduled for February 23, which is perfect. It gives me more than a week to get all my ducks in a row plus it's over school vacation week, so Clare will not miss any school. Clare is only in a half-day morning program so between the Williams syndrome clinic, snow days, and snow delays (kindergarten is cancelled completely when there is a delay), she has already missed so much school over the past few weeks. Yet the surgery is not so far out that my days of freaking out over whether the "bubble" in her tooth has popped and is releasing dangerous bacteria into her bloodstream and potentially her heart is down to only a *short* 11 days.
I will take Clare down to Boston on February 16 to do her pre-op day. This will give us the opportunity to meet with the team involved in the surgery and go over everything. I have been impressed so far with how on top of everything they are (as they should be, but you never know!). The surgical coordinator and I talked yesterday on the phone (about an hour after she called me with the surgery date), and she had already spoken with Clare's cardiologist, pediatrician, and nephrologist to get the approval from them to proceed with surgery. She only needed me to sign a release with the endocrinologist before they would release any information. (Which took me about three minutes thanks to fax machines!) Everyone has given the thumbs up and is on board, so we are ready to go. I will get to talk with cardiac anesthesia on the 16th, but we have dealt with them (too) many times over the past six years, so I know they are usually well-familiar with WS and the associated anesthesia risks.
Clare will have to stay overnight on the cardiac floor following the procedure just to be on the safe side. She has had issues with anesthesia in the past (abnormal rhythms, cardioversions, blood pressure swings), but she was undergoing a catheterization each time, so the doctors were actually in her blood vessels and heart. When she had her fistula surgery eighteen months ago, she did great during the six-hour surgery with anesthesia. She had a lot of trouble post-surgery from the effects of so much anesthesia, though - high fever, vomiting, general yuckiness. The dentist assured me that this was a straightforward procedure, however, and Clare should not be under anesthesia that long. Hopefully an hour tops. So her recovery from the anesthesia should not be as bad. But I am glad they are keeping her overnight so the cardiac nurses and cardiologists can keep an eye on Clare post-surgery. If all goes as planned, she will be discharged the next morning.
I have our childcare lined up, and we are ready to go! Thankfully Clare is only in pain when we go near the tooth, so we are avoiding brushing that part of her mouth until after the surgery. Shawn and Clare are heading down to Kentucky on the Monday and Tuesday prior to her surgery to meet with Dr. Mervis, one of the WS experts in this country. So it's going to be a busy couple of weeks for Clare. Unfortunately, school break is not going to be so relaxing for her!
I will take Clare down to Boston on February 16 to do her pre-op day. This will give us the opportunity to meet with the team involved in the surgery and go over everything. I have been impressed so far with how on top of everything they are (as they should be, but you never know!). The surgical coordinator and I talked yesterday on the phone (about an hour after she called me with the surgery date), and she had already spoken with Clare's cardiologist, pediatrician, and nephrologist to get the approval from them to proceed with surgery. She only needed me to sign a release with the endocrinologist before they would release any information. (Which took me about three minutes thanks to fax machines!) Everyone has given the thumbs up and is on board, so we are ready to go. I will get to talk with cardiac anesthesia on the 16th, but we have dealt with them (too) many times over the past six years, so I know they are usually well-familiar with WS and the associated anesthesia risks.
Clare will have to stay overnight on the cardiac floor following the procedure just to be on the safe side. She has had issues with anesthesia in the past (abnormal rhythms, cardioversions, blood pressure swings), but she was undergoing a catheterization each time, so the doctors were actually in her blood vessels and heart. When she had her fistula surgery eighteen months ago, she did great during the six-hour surgery with anesthesia. She had a lot of trouble post-surgery from the effects of so much anesthesia, though - high fever, vomiting, general yuckiness. The dentist assured me that this was a straightforward procedure, however, and Clare should not be under anesthesia that long. Hopefully an hour tops. So her recovery from the anesthesia should not be as bad. But I am glad they are keeping her overnight so the cardiac nurses and cardiologists can keep an eye on Clare post-surgery. If all goes as planned, she will be discharged the next morning.
I have our childcare lined up, and we are ready to go! Thankfully Clare is only in pain when we go near the tooth, so we are avoiding brushing that part of her mouth until after the surgery. Shawn and Clare are heading down to Kentucky on the Monday and Tuesday prior to her surgery to meet with Dr. Mervis, one of the WS experts in this country. So it's going to be a busy couple of weeks for Clare. Unfortunately, school break is not going to be so relaxing for her!
Thursday, February 10, 2011
The Perfect Storm
There are some days when it's just one "problem" after another, and I am on overload at the end of the day and feel like I don't even know if I am coming or going. When Clare was younger, these days happened more often since she was in a more critical condition, so I am out of practice with dealing with them now!
Over the weekend, I noticed that one of Clare's back molars looked funny. Clare has had some cavities for almost a year now that we have been monitoring with our local pediatric dentist (who specializes in children with special needs) and the pediatric dentist at Children's Hospital (who would perform any necessary procedures in an OR setting at the hospital). Since anesthesia is very risky for individuals with Williams syndrome, we have been doing all we can to avoid having any dental work done. In November, Clare had a set of x-rays taken down at Children's, and we were cleared to just continue her care with our local dentist. The cavities had sealed themselves and none of the nerves were in danger. So when I saw that her molar looked black, at first, I thought it was just chocolate (shocker!). But Clare said it hurt when we brushed it, and the "chocolate" did not come off, so I made an appointment to have our dentist take a look. Which was today. And, sure enough, the pulp of the tooth is gone. So she needs a pulpectomy (kids' version of a root canal) and crown. As in yesterday (as the dentist put it). Clare is now at a dangerous point where bacteria getting into the bloodstream is a very real risk.
In addition to our normal running around, today was also allergy clinic day for Jamie (if you're a regular blog reader, you know what hell that is for me!), and we are at the end of Shawn being away for the week at a sales meeting. So my patience is thinner, my tolerance is lower, and my legs and back are killing me from shoveling slush and ice this week. And then I added phone calls to Clare's cardiologist and Boston dentist to my to-do list. We still had not heard back about Clare's echo results, so I wasn't even sure she was cleared to undergo anesthesia right now.
Clare's cardiologist, Dr. S, (finally!) called me back tonight. Right at dinner time. On my cell phone (we get almost no service at our house). So I left four kids at the table with hamburgers and pasta and raced out to answer the call and freeze my tushie, standing on the driveway (neglected to grab a coat or gloves in my rush to pick up before it went to voicemail) while I talked to the cardiologist. But I am not complaining. Really I am not because I was so glad to hear her voice.
The good news is that Clare is cleared for her dental surgery from a cardiac standpoint. She is still clinically stable, and her heart looks good compared to what it used to look like. Dr. S feels that Clare will tolerate the anesthesia well and, as long as cardiac anesthesiology is on board, she gives the thumbs up for the dental procedure. However, the bad news is that her pressures are creeping up again. Her aorta gradient and one of her pulmonary gradients are higher as well. Not dangerously so in that she needs to have something done right away, but we are at the point where her cardiologist is talking "cath." Yuck. Dr. S consulted with the cardiologist who handled Clare's care when she was cathed as a baby, and they agree that within the next 12 months or so, Clare really should undergo a cath. Primarily to get a more exact picture of what is going on in Clare's heart, but, most likely, to do a little work while they are in there. The plan right now is to do another echo in 6-9 months and then schedule a cath from there.
So there's my perfect storm. Too many things piled on top of each other in a chaotic day after a long week for me to think about. I am still waiting to hear back from the dentist at Children's to actually schedule a date. I really do not think the procedure itself is going to be a big deal. It's just more the trepidation of putting Clare under anesthesia combined with the fear that bacteria could get into Clare's bloodstream if this is not taken care of soon. Hopefully I'll hear something before the weekend.
Over the weekend, I noticed that one of Clare's back molars looked funny. Clare has had some cavities for almost a year now that we have been monitoring with our local pediatric dentist (who specializes in children with special needs) and the pediatric dentist at Children's Hospital (who would perform any necessary procedures in an OR setting at the hospital). Since anesthesia is very risky for individuals with Williams syndrome, we have been doing all we can to avoid having any dental work done. In November, Clare had a set of x-rays taken down at Children's, and we were cleared to just continue her care with our local dentist. The cavities had sealed themselves and none of the nerves were in danger. So when I saw that her molar looked black, at first, I thought it was just chocolate (shocker!). But Clare said it hurt when we brushed it, and the "chocolate" did not come off, so I made an appointment to have our dentist take a look. Which was today. And, sure enough, the pulp of the tooth is gone. So she needs a pulpectomy (kids' version of a root canal) and crown. As in yesterday (as the dentist put it). Clare is now at a dangerous point where bacteria getting into the bloodstream is a very real risk.
In addition to our normal running around, today was also allergy clinic day for Jamie (if you're a regular blog reader, you know what hell that is for me!), and we are at the end of Shawn being away for the week at a sales meeting. So my patience is thinner, my tolerance is lower, and my legs and back are killing me from shoveling slush and ice this week. And then I added phone calls to Clare's cardiologist and Boston dentist to my to-do list. We still had not heard back about Clare's echo results, so I wasn't even sure she was cleared to undergo anesthesia right now.
Clare's cardiologist, Dr. S, (finally!) called me back tonight. Right at dinner time. On my cell phone (we get almost no service at our house). So I left four kids at the table with hamburgers and pasta and raced out to answer the call and freeze my tushie, standing on the driveway (neglected to grab a coat or gloves in my rush to pick up before it went to voicemail) while I talked to the cardiologist. But I am not complaining. Really I am not because I was so glad to hear her voice.
The good news is that Clare is cleared for her dental surgery from a cardiac standpoint. She is still clinically stable, and her heart looks good compared to what it used to look like. Dr. S feels that Clare will tolerate the anesthesia well and, as long as cardiac anesthesiology is on board, she gives the thumbs up for the dental procedure. However, the bad news is that her pressures are creeping up again. Her aorta gradient and one of her pulmonary gradients are higher as well. Not dangerously so in that she needs to have something done right away, but we are at the point where her cardiologist is talking "cath." Yuck. Dr. S consulted with the cardiologist who handled Clare's care when she was cathed as a baby, and they agree that within the next 12 months or so, Clare really should undergo a cath. Primarily to get a more exact picture of what is going on in Clare's heart, but, most likely, to do a little work while they are in there. The plan right now is to do another echo in 6-9 months and then schedule a cath from there.
So there's my perfect storm. Too many things piled on top of each other in a chaotic day after a long week for me to think about. I am still waiting to hear back from the dentist at Children's to actually schedule a date. I really do not think the procedure itself is going to be a big deal. It's just more the trepidation of putting Clare under anesthesia combined with the fear that bacteria could get into Clare's bloodstream if this is not taken care of soon. Hopefully I'll hear something before the weekend.
Monday, February 07, 2011
Feeling Sorry For Myself Never Gets Me Anywhere
Clare and I went to see Disney on Ice: Princess Wishes last week. I took Clare last year, and she loved it. Every time we pass the hockey arena, she asks if the princesses are there. So when they came around again this year, I knew we were definitely going. Clare insisted on dressing up as Cinderella that night (she remembered seeing all the other little girls in their princess dresses last year, and she was not wearing one). She was so over-the-top with excitement to go. We had seats with friends of ours, so Clare was thrilled to be with her friends as well.
For me, watching Clare during the show was better than watching the show. She gasped, exclaimed, grinned, was enthralled by the show. Until the big, evil, fire-breathing dragon from Sleeping Beauty appeared on the ice. Fireworks exploded from its mouth and a line of fire blazed on the ice (actually pretty cool from a special effects viewpoint). In one instant, the enchantment was over. It was a hundred times worse than when Cinderella's magic wore off at midnight and her gorgeous carriage was just an old pumpkin again. All of a sudden, my princess was a quivering mess. Sitting on my lap, crying, hands over her ears, which eventually erupted into a full-blown hysterical fit. The evening ended with me carrying Clare out of the arena and into the icy night while she screamed bloody murder.
Clare fell asleep in the car almost immediately, and I cried the whole way home. The horrible part is that I was not crying for Clare. I did feel bad that the dragon scared the you-know-what out of her and put a sour note on the end of our otherwise-wonderful princess-y evening. And I do hope that this does not ruin her anticipation of going again next year. But I admit I was crying for me. For me. For poor, poor me who had to have a child who could not, at the age of almost-six, understand that the dragon was not real. A child whose hyperacussis made those fireworks sound like a thousand times louder than they really were. A child whose body is programmed in such a way that the adrenaline and cortisol rush of the "fight or flight" response lasts four hours in her little body. Four hours of stress hormones racing around her bloodstream, often causing her to become aggressive, hypervigilant, and over-reactive. Sometimes paralyzing her so that she cannot move. It really was a blessing that Clare exhausted herself out and fell asleep because once she is "triggered," it can take awhile for her body to maintain stability again.
So I cried the whole way home. Shawn came out to the garage, carried Clare in, and put her in her pajamas and into bed. He asked if I wanted to talk about it, but I was still so wrapped up in my self-misery and pity-party that I just wanted to go to bed myself.
Waking up to a new day usually helps me gain perspective. And having my little curly-haired girl crawl into bed, put her arms around me, and say, "I'm so sorry, Mommy," made my heart ache. I have challenges in my life. We all do. And, yes, sometimes I think my challenges are greater than other parents because Clare does have so many medical, developmental, and emotional issues and that puts me into my "poor me" state of mind. But then I realize that feeling sorry for myself never gets me anywhere. I cannot wallow in self-pity and spend the day in bed, which would be my preference some days. Something or someone will snap me out of my funk and make me focus, not on the challenges in my life, but on all the blessings. I am not a touchy-feely, mushy kind of girl. I loathe self-help books, Dr. Phil types, and other such devices. But I am finding these days that a dose of perspective, a thought to meditate on, and prayer can get me through. And all the hugs my children will give me!
For me, watching Clare during the show was better than watching the show. She gasped, exclaimed, grinned, was enthralled by the show. Until the big, evil, fire-breathing dragon from Sleeping Beauty appeared on the ice. Fireworks exploded from its mouth and a line of fire blazed on the ice (actually pretty cool from a special effects viewpoint). In one instant, the enchantment was over. It was a hundred times worse than when Cinderella's magic wore off at midnight and her gorgeous carriage was just an old pumpkin again. All of a sudden, my princess was a quivering mess. Sitting on my lap, crying, hands over her ears, which eventually erupted into a full-blown hysterical fit. The evening ended with me carrying Clare out of the arena and into the icy night while she screamed bloody murder.
Clare fell asleep in the car almost immediately, and I cried the whole way home. The horrible part is that I was not crying for Clare. I did feel bad that the dragon scared the you-know-what out of her and put a sour note on the end of our otherwise-wonderful princess-y evening. And I do hope that this does not ruin her anticipation of going again next year. But I admit I was crying for me. For me. For poor, poor me who had to have a child who could not, at the age of almost-six, understand that the dragon was not real. A child whose hyperacussis made those fireworks sound like a thousand times louder than they really were. A child whose body is programmed in such a way that the adrenaline and cortisol rush of the "fight or flight" response lasts four hours in her little body. Four hours of stress hormones racing around her bloodstream, often causing her to become aggressive, hypervigilant, and over-reactive. Sometimes paralyzing her so that she cannot move. It really was a blessing that Clare exhausted herself out and fell asleep because once she is "triggered," it can take awhile for her body to maintain stability again.
So I cried the whole way home. Shawn came out to the garage, carried Clare in, and put her in her pajamas and into bed. He asked if I wanted to talk about it, but I was still so wrapped up in my self-misery and pity-party that I just wanted to go to bed myself.
Waking up to a new day usually helps me gain perspective. And having my little curly-haired girl crawl into bed, put her arms around me, and say, "I'm so sorry, Mommy," made my heart ache. I have challenges in my life. We all do. And, yes, sometimes I think my challenges are greater than other parents because Clare does have so many medical, developmental, and emotional issues and that puts me into my "poor me" state of mind. But then I realize that feeling sorry for myself never gets me anywhere. I cannot wallow in self-pity and spend the day in bed, which would be my preference some days. Something or someone will snap me out of my funk and make me focus, not on the challenges in my life, but on all the blessings. I am not a touchy-feely, mushy kind of girl. I loathe self-help books, Dr. Phil types, and other such devices. But I am finding these days that a dose of perspective, a thought to meditate on, and prayer can get me through. And all the hugs my children will give me!
Sunday, January 30, 2011
Happy 8th Birthday, Jamie!
Eight years ago, Shawn and I welcomed our first child into this world. There were many times in our early married life that I thought we would never be able to have a baby as we struggled with some infertility. Then after going six days past my due date, laboring for 24 hours, waiting another agonizing 40 minutes after delivery (Jamie swallowed meconium upon birth, so the NICU team worked on him for a bit), I was in disbelief when I finally held my baby boy in my arms.Looking at you today, Jamie, I am in disbelief once again that you are that same sweet (BIG!) baby I held eight years ago. I cannot see any of that baby in you anymore. Now I can see glimpses of the youn
g man you are becoming. Your current passions are soccer, reading (and I love that you are engrossed in both Charlotte's Web and The Wizard of Oz - you are so like your mother and grandmother in that you read more than one book at a time!), Manchester Monarchs hockey, and Star Wars (particularly Star Wars Legos). You thrive at school, love to be active, and are better than I am at most puzzles and games. For the most part (*grin*), you are an attentive, patient older brother to all your little siblings. You and Violet especially have a beautiful bond, and you are so sweet to your baby sister.
We are so proud of you, James Michael, and we love you so much! Happy Birthday!
Wednesday, January 26, 2011
Time to Count
Clare had her visit with the pediatric nephrologist last week. And it was so-so news. The good news is that her kidney scan did not show a significant increase in the amount of calcified tissue in her kidneys compared to her scan six months ago and there was no evidence of kidney stones. The bad news is that the damage that has been done is permanent and that tissue will never function again. The good news is that Clare is still young and her kidneys have lots more growing to do. If we can halt the calcification process now, when she is an adult, a scan will barely show the calcified tissue. The bad news is that if we can't, Clare could face renal failure in the future. It was a lot to take in after a long day at the hospital.
The plan right now is to alter Clare's diet. Not what I wanted to hear from a selfish standpoint! She is on a restricted calcium and low sodium diet now. The sodium is not really a big deal since we are low sodium in our house to begin with. The calcium is another matter. She is not supposed to have more than 800 mg of calcium per day. Which is very tough considering that she used to get about 900-1200 mg from her milk intake alone! Never mind the yogurt, cream cheese, macaroni and cheese, cheese quesadillas, the list goes on and on and on. And now that I am scouring labels, I am finding that so many foods are fortified. For example, the pancakes Clare loves have 200 mg of calcium in them. She has her pancakes and a cup of milk for breakfast, and we are already at over 400 mg. So it's going to be tricky. It's going to take some more planning and figuring on my part. (Such as finding different pancakes for Clare - she eats them daily, so I buy frozen ones because I don't have time every morning to make them from scratch. Now I will find a way to make them where they are lower in calcium and sodium, make a whole batch on the weekend, and freeze them for the week.) It's going to take more forethought in meal planning than I give on most days. I plan my dinners out 1-2 weeks in advance, but breakfast and lunch are almost never planned. Yesterday, I had already planned on trying out a new Tex-Mex recipe for dinner and making cheese quesadillas for those who turned their nose up at my new food (which usually includes four little ones around the table). However, I did not think of that when I fed Clare her pancakes for breakfast, then after a tough day at school (she had been out of school for over two weeks due to doctor's appointments and snow days and is having some readjustment), I promised her macaroni and cheese and chocolate milk for lunch. Dinner comes along, and Clare is already over her calcium and sodium limit. Grrrr... I am sure eventually I won't even have to think twice about the combination of foods in a day, but for now, it's taking a lot to get there!
Clare will see the nephrologist again in March to test her urine and blood calcium again and see how the diet is working. If there is no improvement, then medication is the next option. However, medication for this in children with Williams syndrome is tricky in another way. They do not always absorb calcium properly in their bodies. By Clare's kidneys absorbing the calcium, it is keeping the calcium from being absorbed into her bloodstream and causing hypercalcemia (which can have its own list of symptoms). If the medication keeps the kidneys from absorbing the calcium, then she will have to be monitored to be sure that it does not cause hypercalcemia. It's a balancing act. So, as hard as it will be, I am focusing 100% on keeping Clare's diet in the limits we've been given. (As a medical note of interest, calcium likes to follow sodium around, so the theory with the low sodium diet is that if the amount of sodium going through the kidneys is lowered, then the amount of calcium following that sodium will be restricted, too.)
Also in March, Clare is going to have a vascular scan done of her renal arteries. Based on the renal ultrasound (which is not as good at looking at the renal arteries) and her blood pressure, the nephrologist feels she may have some stenosis in her renal arteries. If the vascular scan does show stenosis, then Clare will undergo a sedated MRA to determine how much stenosis. The vascular scan cannot do this and the MRA would be a one-shot deal, but we are choosing to go with the test that does not require sedation first. We don't put Clare under unless we know we have to! And, if there is stenosis, depending on what is seen on the MRA, we will discuss treatment options from there. Similar to her pulmonary arteries, she may need balloon dilations or stents to open up her renal arteries. For now, we continue praying that all this will work itself out and are grateful that Clare is as healthy as she is.
The plan right now is to alter Clare's diet. Not what I wanted to hear from a selfish standpoint! She is on a restricted calcium and low sodium diet now. The sodium is not really a big deal since we are low sodium in our house to begin with. The calcium is another matter. She is not supposed to have more than 800 mg of calcium per day. Which is very tough considering that she used to get about 900-1200 mg from her milk intake alone! Never mind the yogurt, cream cheese, macaroni and cheese, cheese quesadillas, the list goes on and on and on. And now that I am scouring labels, I am finding that so many foods are fortified. For example, the pancakes Clare loves have 200 mg of calcium in them. She has her pancakes and a cup of milk for breakfast, and we are already at over 400 mg. So it's going to be tricky. It's going to take some more planning and figuring on my part. (Such as finding different pancakes for Clare - she eats them daily, so I buy frozen ones because I don't have time every morning to make them from scratch. Now I will find a way to make them where they are lower in calcium and sodium, make a whole batch on the weekend, and freeze them for the week.) It's going to take more forethought in meal planning than I give on most days. I plan my dinners out 1-2 weeks in advance, but breakfast and lunch are almost never planned. Yesterday, I had already planned on trying out a new Tex-Mex recipe for dinner and making cheese quesadillas for those who turned their nose up at my new food (which usually includes four little ones around the table). However, I did not think of that when I fed Clare her pancakes for breakfast, then after a tough day at school (she had been out of school for over two weeks due to doctor's appointments and snow days and is having some readjustment), I promised her macaroni and cheese and chocolate milk for lunch. Dinner comes along, and Clare is already over her calcium and sodium limit. Grrrr... I am sure eventually I won't even have to think twice about the combination of foods in a day, but for now, it's taking a lot to get there!
Clare will see the nephrologist again in March to test her urine and blood calcium again and see how the diet is working. If there is no improvement, then medication is the next option. However, medication for this in children with Williams syndrome is tricky in another way. They do not always absorb calcium properly in their bodies. By Clare's kidneys absorbing the calcium, it is keeping the calcium from being absorbed into her bloodstream and causing hypercalcemia (which can have its own list of symptoms). If the medication keeps the kidneys from absorbing the calcium, then she will have to be monitored to be sure that it does not cause hypercalcemia. It's a balancing act. So, as hard as it will be, I am focusing 100% on keeping Clare's diet in the limits we've been given. (As a medical note of interest, calcium likes to follow sodium around, so the theory with the low sodium diet is that if the amount of sodium going through the kidneys is lowered, then the amount of calcium following that sodium will be restricted, too.)
Also in March, Clare is going to have a vascular scan done of her renal arteries. Based on the renal ultrasound (which is not as good at looking at the renal arteries) and her blood pressure, the nephrologist feels she may have some stenosis in her renal arteries. If the vascular scan does show stenosis, then Clare will undergo a sedated MRA to determine how much stenosis. The vascular scan cannot do this and the MRA would be a one-shot deal, but we are choosing to go with the test that does not require sedation first. We don't put Clare under unless we know we have to! And, if there is stenosis, depending on what is seen on the MRA, we will discuss treatment options from there. Similar to her pulmonary arteries, she may need balloon dilations or stents to open up her renal arteries. For now, we continue praying that all this will work itself out and are grateful that Clare is as healthy as she is.
Friday, January 21, 2011
Happy 2nd Birthday to my Baby!
Happy Birthday to my sweet TWO-YEAR OLD, Violet Grace!!This is always the year when you stop being my baby and start becoming a big girl. You have changed so much over the past year. You love baby dolls and purses. We often see you pushing your baby dolls around in the stroller with a purse over your arm full of all the essentials a mommy needs – phone, chap stick, bracelets, Lego men. You want
to be helpful and your two chores are dust busting under the dining room table and throwing any and all garbage away. You can be the best at picking up toys, but only when you want to and if you consider it fun.In the morning when I bring you downstairs, you have three questions for me - "Where's Dada?" (sleeping), "Where's mmm mmm?" (your milk which we promptly get from the fridge), and "Where's kitties?" (it's become your job to open the kitty door and call them upstairs). I am continually amazed at how different each child can be, and your favorite foods include bananas, fruit snacks, cheese quesadillas, and hummus with pita chips.
You love your older brothers and sister and want to be involved in all that they do (unfortunately for them sometimes!). However, you also enjoy the mornings when they are all at school. You play by yourself for at least an hour and love having the run of the house. You are still my Mama's girl, though, and most times, you are right by my side.I love you so much, sweet girl, and a big HAPPY BIRTHDAY to you!
Monday, January 17, 2011
What Has Clare Been Up To??
This is a VERY common question in our house these days! Clare is going through a... shall we say... challenging phase right now. If she is quiet for more than five minutes and we cannot physically see her at that moment, chances are, she's into something she's not supposed to be. (Like I just stopped her from squeezing all the gogurts out onto the kitchen table.) We talk a lot about impulse control, ask first, don't touch, quiet hands, blah, blah, blah. She can parrot everything back to us, but actually controlling herself is another matter. On the plus side, I have ample opportunity to practice the virtue of patience.
We were in our medical lull for a few months, but now it's been back-to-back doctor's appointments. Clare has been seeing the pediatric dentist at Children's Hospital Boston. Shortly before Christmas, her x-rays showed that, with her special toothpaste, her cavities have sealed themselves and were not near the nerves, and we have successfully avoided the OR to have the cavities filled (at least for right now). She can now follow up with our local pediatric dentist. As blessed as we are to be so close to Boston, no trip to Children's Hospital is short or easy, and the pediatric dental office has been the most grueling process so far when it comes to logistics. I am glad these monthly visits are over!
Almost five and a half years after her diagnosis, Clare finally went through the Williams Syndrome Clinic out of Children's Hospital Boston for the first time. We heard varying reports about the clinic and never felt particularly compelled one way or the other to take her. The one thing everyone agreed on was that it was a long, exhausting three-day process. However, after attending the WS convention this past summer and then Clare starting kindergarten, we agreed that it was now the time to bring Clare to the clinic. Due to the weather, Shawn ended up staying with Clare in a hotel in Boston for two nights. They were able to make it home the third night and ventured back out early the next morning. I am glad we waited a few years before doing the clinic because I doubt Clare's stamina could have lasted for the L-O-N-G three days (actually four total since she had the speech evaluation the Friday prior). Since Clare's medical care is very well-supervised, the clinic for her was primarily an evaluation of how she is doing in other areas. She was evaluated and tested with speech therapy, occupational therapy, physical therapy, audiology, behavioral psychology, and neuropsychology. Preliminary reports are that Clare is doing well as a whole (and tested well compared to other children with Williams syndrome). We have to wait a few more weeks for the full reports, which will then give us a chance to see what changes, if any, need to be made at school.
Clare also had her cardiology appointment and echocardiogram while at the WS Clinic. It has been nine months since her last echo (the longest stretch ever!), so we are anxiously awaiting the results. Due to the structure of the clinic, Clare's cardiologist did not review the echo prior to meeting with Clare and Shawn, so she could not relay the results immediately. Now, a week later, we still have not heard back from the cardiologist. (And, yes, we have called, e-mailed, and Shawn stopped in on their last day of clinic.) Part of my brain believes that Clare's heart remains stable and we can keep chugging along. She shows no symptoms at home of having any trouble and her blood pressure has been relatively under control (without any meds). However, the other part of me keeps saying that it has been over three years since Clare had a cath done, so our time has to be up soon. At some point in the future, Clare will need another open heart surgery to remove the existing stents in her pulmonary arteries and insert bigger ones. When the initial stents were inserted at five months old, the cardiologist predicted then that Clare could possibly get to the age of 10 before that would need to be done. It's hard to believe we are already over halfway to that point. So I will breathe much easier once we hear the echo results.
In new developments, I am taking Clare up to Children's Hospital at Dartmouth (about an hour north of us) to meet with her new doctor, a pediatric nephrologist. Clare had a renal scan performed last summer in Boston which showed calcium deposits in her kidneys. After that finding, Clare underwent multiple rounds of blood work and urine tests to monitor the calcium in her body. Her blood calcium levels have been slightly above the normal range, so she is considered to be borderline hypercalcemic. Her urine tests showed that she is excreting calcium in her urine as well,. Many children with WS have problems with hypercalcemia (for some reason, individuals with WS have trouble absorbing calcium properly). Clare was borderline hypercalcemic when she was a toddler, but was always asymptomatic, so we never did anything about it. Now, however, since the calcium is showing up in her blood, urine, and kidneys, it's time to do something. Clare's endocrinologist did another round of blood work and urine tests a couple weeks ago (since he had to test her thyroid levels, do it all with one stick!), and I have a CD of Clare's renal scan from last summer to bring with us. Clare will have another scan (for comparison) tomorrow, then we will meet a few hours later with the nephrologist to discuss the results and what treatment, if any, is necessary. I am just praying that we do not have to alter Clare's diet too much. Being a limited food eater, dairy is a huge component of Clare's diet - she gets the majority of her calories from milk, macaroni and cheese, cream cheese, and yogurt!
I will be glad to get all these appointments behind us and return to our schedule. Due to the clinic, snow days, and holidays, Clare will miss almost two weeks of school. We are all craving our routine!
We were in our medical lull for a few months, but now it's been back-to-back doctor's appointments. Clare has been seeing the pediatric dentist at Children's Hospital Boston. Shortly before Christmas, her x-rays showed that, with her special toothpaste, her cavities have sealed themselves and were not near the nerves, and we have successfully avoided the OR to have the cavities filled (at least for right now). She can now follow up with our local pediatric dentist. As blessed as we are to be so close to Boston, no trip to Children's Hospital is short or easy, and the pediatric dental office has been the most grueling process so far when it comes to logistics. I am glad these monthly visits are over!
Almost five and a half years after her diagnosis, Clare finally went through the Williams Syndrome Clinic out of Children's Hospital Boston for the first time. We heard varying reports about the clinic and never felt particularly compelled one way or the other to take her. The one thing everyone agreed on was that it was a long, exhausting three-day process. However, after attending the WS convention this past summer and then Clare starting kindergarten, we agreed that it was now the time to bring Clare to the clinic. Due to the weather, Shawn ended up staying with Clare in a hotel in Boston for two nights. They were able to make it home the third night and ventured back out early the next morning. I am glad we waited a few years before doing the clinic because I doubt Clare's stamina could have lasted for the L-O-N-G three days (actually four total since she had the speech evaluation the Friday prior). Since Clare's medical care is very well-supervised, the clinic for her was primarily an evaluation of how she is doing in other areas. She was evaluated and tested with speech therapy, occupational therapy, physical therapy, audiology, behavioral psychology, and neuropsychology. Preliminary reports are that Clare is doing well as a whole (and tested well compared to other children with Williams syndrome). We have to wait a few more weeks for the full reports, which will then give us a chance to see what changes, if any, need to be made at school.
Clare also had her cardiology appointment and echocardiogram while at the WS Clinic. It has been nine months since her last echo (the longest stretch ever!), so we are anxiously awaiting the results. Due to the structure of the clinic, Clare's cardiologist did not review the echo prior to meeting with Clare and Shawn, so she could not relay the results immediately. Now, a week later, we still have not heard back from the cardiologist. (And, yes, we have called, e-mailed, and Shawn stopped in on their last day of clinic.) Part of my brain believes that Clare's heart remains stable and we can keep chugging along. She shows no symptoms at home of having any trouble and her blood pressure has been relatively under control (without any meds). However, the other part of me keeps saying that it has been over three years since Clare had a cath done, so our time has to be up soon. At some point in the future, Clare will need another open heart surgery to remove the existing stents in her pulmonary arteries and insert bigger ones. When the initial stents were inserted at five months old, the cardiologist predicted then that Clare could possibly get to the age of 10 before that would need to be done. It's hard to believe we are already over halfway to that point. So I will breathe much easier once we hear the echo results.
In new developments, I am taking Clare up to Children's Hospital at Dartmouth (about an hour north of us) to meet with her new doctor, a pediatric nephrologist. Clare had a renal scan performed last summer in Boston which showed calcium deposits in her kidneys. After that finding, Clare underwent multiple rounds of blood work and urine tests to monitor the calcium in her body. Her blood calcium levels have been slightly above the normal range, so she is considered to be borderline hypercalcemic. Her urine tests showed that she is excreting calcium in her urine as well,. Many children with WS have problems with hypercalcemia (for some reason, individuals with WS have trouble absorbing calcium properly). Clare was borderline hypercalcemic when she was a toddler, but was always asymptomatic, so we never did anything about it. Now, however, since the calcium is showing up in her blood, urine, and kidneys, it's time to do something. Clare's endocrinologist did another round of blood work and urine tests a couple weeks ago (since he had to test her thyroid levels, do it all with one stick!), and I have a CD of Clare's renal scan from last summer to bring with us. Clare will have another scan (for comparison) tomorrow, then we will meet a few hours later with the nephrologist to discuss the results and what treatment, if any, is necessary. I am just praying that we do not have to alter Clare's diet too much. Being a limited food eater, dairy is a huge component of Clare's diet - she gets the majority of her calories from milk, macaroni and cheese, cream cheese, and yogurt!
I will be glad to get all these appointments behind us and return to our schedule. Due to the clinic, snow days, and holidays, Clare will miss almost two weeks of school. We are all craving our routine!
Wednesday, January 12, 2011
My Little Friend
No matter what I am doing in the kitchen, Violet is always right there with me. Right now I am obviously on the laptop, and she immediately pushed a chair right next to mine. She is standing on her chair scribbling on a scrap paper next to me as I type. (And proclaiming "Ta da!" after everything she scribbles so I can properly admire it.) When I am cooking, a chair gets pushed over to the counter or stove so Violet can see what I am doing. This often involves looking at all the utensils in the drawer or reorganizing my Keurig caddy. Sometimes it means going through the spices or examining Clare's bag of bite blocks and mouth exercise toys or rearranging the vitamins and prescription bottles. Whatever it is, it ALWAYS involves a mess, makes my chore or project even longer, and answering over and over, "What's this, Mama? What's this, Mama?" It also is one of the sweetest parts of my day.
Each of my babies seem clingier than the last. I don't know if that is really true or just my perception because my days are busier and there are many times I would love them to be less clingy! Violet has been very mommy-attached since day one (as daddy, aunts, and grandparents can attest to!). When I had kidney surgery over a year ago, we weren't sure if Violet would survive unscathed. Leaving her in the childcare room at the gym was a nightmare for months. Looking back, Violet has come a long way in being more independent. On those two mornings a week when the three older kids are in school, Violet actually enjoys her independence from me and her older siblings. We have about an hour to ourselves between drop-offs and pick-ups, and Violet loves to go off and play by herself. I can hear her singing to herself and talking to her baby dolls. As clingy as she seems to be sometimes, I do believe that she is a child secure in the love and presence of her mommy which enables her to play independently for longer periods of time than her siblings were at almost two years old.
Whatever the psychology behind it, my little friend and I are going to have our worlds re-adjusted in about five months when the baby comes, so we are enjoying these days together.
Each of my babies seem clingier than the last. I don't know if that is really true or just my perception because my days are busier and there are many times I would love them to be less clingy! Violet has been very mommy-attached since day one (as daddy, aunts, and grandparents can attest to!). When I had kidney surgery over a year ago, we weren't sure if Violet would survive unscathed. Leaving her in the childcare room at the gym was a nightmare for months. Looking back, Violet has come a long way in being more independent. On those two mornings a week when the three older kids are in school, Violet actually enjoys her independence from me and her older siblings. We have about an hour to ourselves between drop-offs and pick-ups, and Violet loves to go off and play by herself. I can hear her singing to herself and talking to her baby dolls. As clingy as she seems to be sometimes, I do believe that she is a child secure in the love and presence of her mommy which enables her to play independently for longer periods of time than her siblings were at almost two years old.
Whatever the psychology behind it, my little friend and I are going to have our worlds re-adjusted in about five months when the baby comes, so we are enjoying these days together.
Thursday, January 06, 2011
Abundance
Last week, I was surrounded by children, toys, presents, candy, boxes, bags, and garbage, garbage, and more garbage. We were unexpectedly snowed in down in RI at the beginning of the week and missed garbage day. After Christmas is not a good time to miss garbage day! Between regular household trash and all the wrappings and boxes from Christmas, it started to line the garage walls, coming up into the mudroom, and paper and recyclable refuse had its own little corner in the kitchen. By the end of the week, Shawn started parking in the driveway so the trash could pile in his spot in the garage. We truly were overwhelmed with abundance!
In my wildest imaginings, I never pictured myself as a stay-at-home mom of four (soon to be five) children. Growing up, babysitting was a necessary evil to earn some money. I entered college as a double science major/pre-med and still entertained my fantasy of becoming a forensic pathologist. Even after I realized during my sophomore year that science was not my true love and switched majors, I still yearned for academia and a career. I loved history and starting dreaming about higher education, scholarly theses, and college professorships. I started dating Shawn in my sophomore year. No lightning bolt struck me, no voice of God in my head telling me he was the one, but everything did change. A few months after I graduated with my history degree, we were married.
Looking back at my life, it amazes me to see the pieces fall into place. (Some of them at least!) Switching majors, graduating with a degree that I was questioned about again and again, "What are you going to do with a history degree??", accepting a job at a local insurance company which then relocated me to New Hampshire. There were times when I did wonder what I was doing and what path was I on. But Shawn and I were in this together, and that's all that really mattered to me. Now I know why I only had a job and not a career. Shortly before Jamie was born, I quit working completely. I enjoyed my job, but I did not think twice about leaving it. I have never missed working one day since I had my children. I am glad I did not spend all that time and money pursuing degrees and careers that might cause an internal struggle of career versus motherhood. I have never felt shortchanged or that I gave anything up when I chose to become a stay-at-home mom. I know now that THIS is what I am supposed to do, where I am supposed to be, who I am.
So, on this celebration of the birthday of my dear husband, I want to wish Shawn a very happy birthday. I cannot imagine my life now without you and this abundance of life, joy, and love that surrounds us. I love you! Our quiver is indeed full!
“Behold, children are a gift of the Lord; the fruit of the womb is a reward. Like arrows in the hand of a warrior, so are the children on one’s youth. How blessed is the man whose quiver is full of them; they shall not be ashamed, when they speak with their enemies in the gate.”
--Psalm 127:3-5
In my wildest imaginings, I never pictured myself as a stay-at-home mom of four (soon to be five) children. Growing up, babysitting was a necessary evil to earn some money. I entered college as a double science major/pre-med and still entertained my fantasy of becoming a forensic pathologist. Even after I realized during my sophomore year that science was not my true love and switched majors, I still yearned for academia and a career. I loved history and starting dreaming about higher education, scholarly theses, and college professorships. I started dating Shawn in my sophomore year. No lightning bolt struck me, no voice of God in my head telling me he was the one, but everything did change. A few months after I graduated with my history degree, we were married.
Looking back at my life, it amazes me to see the pieces fall into place. (Some of them at least!) Switching majors, graduating with a degree that I was questioned about again and again, "What are you going to do with a history degree??", accepting a job at a local insurance company which then relocated me to New Hampshire. There were times when I did wonder what I was doing and what path was I on. But Shawn and I were in this together, and that's all that really mattered to me. Now I know why I only had a job and not a career. Shortly before Jamie was born, I quit working completely. I enjoyed my job, but I did not think twice about leaving it. I have never missed working one day since I had my children. I am glad I did not spend all that time and money pursuing degrees and careers that might cause an internal struggle of career versus motherhood. I have never felt shortchanged or that I gave anything up when I chose to become a stay-at-home mom. I know now that THIS is what I am supposed to do, where I am supposed to be, who I am.
So, on this celebration of the birthday of my dear husband, I want to wish Shawn a very happy birthday. I cannot imagine my life now without you and this abundance of life, joy, and love that surrounds us. I love you! Our quiver is indeed full!
“Behold, children are a gift of the Lord; the fruit of the womb is a reward. Like arrows in the hand of a warrior, so are the children on one’s youth. How blessed is the man whose quiver is full of them; they shall not be ashamed, when they speak with their enemies in the gate.”
--Psalm 127:3-5
Tuesday, January 04, 2011
Enlightenment
With his allowance, Jamie purchased a booklight for himself at the dollar store a few weeks before Christmas. Since the boys share a room, on nights when Simon lost the privilege of having reading time in bed (which actually happens quite frequently!), Jamie was allowed to use his booklight to read in bed when all the room lights were shut off.
Simon coveted that booklight. Jamie is very possessive of his little light and kept it in a safe place so his younger siblings could not touch it or, more aptly, break it. Simon worked diligently for weeks on filling up his sticker chart solely for the purpose of possessing a booklight. (Simon and Clare earn a selection from the dollar store once their sticker chart is complete in lieu of getting an allowance.)
Yesterday was the big day in which Simon became the proud owner of his own booklight. And his older brother obviously inducted him into the Secret Society of Booklight Owners. Today in the car, I overheard Simon telling Clare: "You know what Jamie told me? Jamie told me that when Mom comes in the room and says 'lights out,' when she leaves, that's when we can turn on our booklights and continue reading with our booklights!"
Simon coveted that booklight. Jamie is very possessive of his little light and kept it in a safe place so his younger siblings could not touch it or, more aptly, break it. Simon worked diligently for weeks on filling up his sticker chart solely for the purpose of possessing a booklight. (Simon and Clare earn a selection from the dollar store once their sticker chart is complete in lieu of getting an allowance.)
Yesterday was the big day in which Simon became the proud owner of his own booklight. And his older brother obviously inducted him into the Secret Society of Booklight Owners. Today in the car, I overheard Simon telling Clare: "You know what Jamie told me? Jamie told me that when Mom comes in the room and says 'lights out,' when she leaves, that's when we can turn on our booklights and continue reading with our booklights!"
Friday, December 31, 2010
Judgement-Free Zone
Shawn and I decided to cancel our gym membership for 2011 and purchase an elliptical for the home instead. Over the year, for the amount we were paying for our membership plus childcare (while I worked out), the cost of the elliptical was considerably less. There were a slew of other reasons why the convenience of having an in-home machine was better for our family. Plus we figured that if the big ole machine was sitting smack-dab in our bedroom, we would feel guilty not using it and it would motivate us to exercise more.
This morning, Shawn broke in our machine. In a slightly different atmosphere than what he was used to at the gym. His lovely wife lounged in bed, sipping her coffee and reading her latest book, How to Tuck in a Superhero by Rachel Balducci (HIGHLY RECOMMENDED to those moms of boys out there!). His two equally-lovely little girls were perched on the side of the bed watching Daddy exercise and offering words of encouragement. (I had put on a show for them to watch, but Shawn was apparently much more interesting.)
"Dada doing? Dada doing?" (from Violet)
"What are you doing, Daddy? Is that your exercise machine? What's in your water bottle? Why are you breathing like that?" (from Clare)
The one-sided conversations continued for the entire length of the workout. Towards the end, Clare was standing alongside the elliptical, moving her arms and legs like Shawn was and she mimicked the huffing and puffing perfectly. I'm thinking that tomorrow, we're going to be locked out of the bedroom during muscle hour.
This morning, Shawn broke in our machine. In a slightly different atmosphere than what he was used to at the gym. His lovely wife lounged in bed, sipping her coffee and reading her latest book, How to Tuck in a Superhero by Rachel Balducci (HIGHLY RECOMMENDED to those moms of boys out there!). His two equally-lovely little girls were perched on the side of the bed watching Daddy exercise and offering words of encouragement. (I had put on a show for them to watch, but Shawn was apparently much more interesting.)
"Dada doing? Dada doing?" (from Violet)
"What are you doing, Daddy? Is that your exercise machine? What's in your water bottle? Why are you breathing like that?" (from Clare)
The one-sided conversations continued for the entire length of the workout. Towards the end, Clare was standing alongside the elliptical, moving her arms and legs like Shawn was and she mimicked the huffing and puffing perfectly. I'm thinking that tomorrow, we're going to be locked out of the bedroom during muscle hour.
Tuesday, December 07, 2010
Charity Case
I am experiencing "all-day" sickness in the first trimester of this pregnancy. I have had some level of "morning" sickness in all my pregnancies, but it always seems to get worse. I remember with Violet's pregnancy, I actually vomited frequently, which I have not done this time. So I don't know if the sickness gets worse or if it just gets harder because each pregnancy finds us a much busier family! In either case, I am slowly starting to feel better, but am still very tired by the middle of the day and the act of creating meals is very difficult for me. The mere thought of chopping up vegetables or touching raw meat makes me gag. There are nights when I cannot even stand the smell of Shawn cooking dinner, so I stay far out of the odor's reach in my bedroom until all remnants of dinner are cleaned up. Thankfully I can usually manage breakfast for the kids and, as long as lunch is sandwiches (which are usually somewhat odorless), I am okay. Shawn has been awesome about picking up my dinner slack, so we've been chugging along fairly well. Until the week before Thanksgiving.
Shawn began a new job at the end of October, which involved four weeks of training. One week prior to Thanksgiving week and three weeks after. Three weeks in a row! I paled at the thought of three weeks by myself with the four kids. That week before Thanksgiving, the kids lived on cereal, pancakes, and mac & cheese. We did one night of Burger King (them, not me) and I thought I would throw up. How was I going to survive?
I hate asking for help. With a passion. I like to be independent. I like to know that I can do this by myself. Be strong. Be this cool mother of four kids who can handle anything thrown her way. But, in reality, I really could use a little help. Shawn is a big contributor in the school drop-offs and pick-ups since he normally works out of the home. A friend offered to bring Jamie home every day from school. I felt so bad about the inconvenience for my friend, but even that one thing made a huge difference. It meant one less trip getting kids in and out of the car and allowed Violet to actually have an afternoon nap. Then another friend organized some meals for me. Another huge help. It was a comfort to know that not every night would be cereal or pancakes for the kids. And, on those nights I just was not up to making dinner, I did not feel so bad doing something simple because there would be other nights where a prepared (more balanced!) meal would be brought to our door.
It took me a long time to get over the guilt of accepting help from people who have equally busy lives. (And I still feel a tad guilty because it's not like the kids would be dead of starvation by the time Shawn comes back home.) But then I read a great article in Faith and Family magazine (and I apologize that now I cannot find the magazine and give the author to proper credit). It was about a mother who had to rely on help from others after her husband left her. She spoke to those out there who are in a position to help those in need and to those who needed to accept help. She basically stated it was my Catholic duty to allow others to help me. That by doing so, I was helping those people enact corporal works of mercy in a very real, livable way. We can't all volunteer at the soup kitchen and feed people. We can't all set up a prison ministry or visit nursing homes and hospitals. These days, (even when not sick and single-momming it for a few weeks) it takes everything I have to keep my own children clothed, fed, happy, and healthy. But I can cook extra food one night for a family who just had a new baby. And I can babysit for a friend so she can volunteer at her daughter's school. And I wouldn't want those people feeling guilty about accepting help from me, so I need to stop feeling that way about others. So to all those who have helped out while Shawn has been gone, a big thank you from me and you are one step closer to heaven!
Shawn began a new job at the end of October, which involved four weeks of training. One week prior to Thanksgiving week and three weeks after. Three weeks in a row! I paled at the thought of three weeks by myself with the four kids. That week before Thanksgiving, the kids lived on cereal, pancakes, and mac & cheese. We did one night of Burger King (them, not me) and I thought I would throw up. How was I going to survive?
I hate asking for help. With a passion. I like to be independent. I like to know that I can do this by myself. Be strong. Be this cool mother of four kids who can handle anything thrown her way. But, in reality, I really could use a little help. Shawn is a big contributor in the school drop-offs and pick-ups since he normally works out of the home. A friend offered to bring Jamie home every day from school. I felt so bad about the inconvenience for my friend, but even that one thing made a huge difference. It meant one less trip getting kids in and out of the car and allowed Violet to actually have an afternoon nap. Then another friend organized some meals for me. Another huge help. It was a comfort to know that not every night would be cereal or pancakes for the kids. And, on those nights I just was not up to making dinner, I did not feel so bad doing something simple because there would be other nights where a prepared (more balanced!) meal would be brought to our door.
It took me a long time to get over the guilt of accepting help from people who have equally busy lives. (And I still feel a tad guilty because it's not like the kids would be dead of starvation by the time Shawn comes back home.) But then I read a great article in Faith and Family magazine (and I apologize that now I cannot find the magazine and give the author to proper credit). It was about a mother who had to rely on help from others after her husband left her. She spoke to those out there who are in a position to help those in need and to those who needed to accept help. She basically stated it was my Catholic duty to allow others to help me. That by doing so, I was helping those people enact corporal works of mercy in a very real, livable way. We can't all volunteer at the soup kitchen and feed people. We can't all set up a prison ministry or visit nursing homes and hospitals. These days, (even when not sick and single-momming it for a few weeks) it takes everything I have to keep my own children clothed, fed, happy, and healthy. But I can cook extra food one night for a family who just had a new baby. And I can babysit for a friend so she can volunteer at her daughter's school. And I wouldn't want those people feeling guilty about accepting help from me, so I need to stop feeling that way about others. So to all those who have helped out while Shawn has been gone, a big thank you from me and you are one step closer to heaven!
Wednesday, November 24, 2010
Wednesday, November 10, 2010
Revision and Reality
Things have been moving along with amending Clare's IEP and adding some services. We had a very successful meeting with her special education team, despite the nervous pit in my stomach and talking too fast at the beginning of the meeting. Her kindergarten teacher, special education teacher, and therapists all agreed that Clare is very behind academically compared to the rest of her class. Socially, she is doing a great job adjusting to kindergarten and interacting with her peers. But while her classmates are writing letters and words and learning how to read, Clare has only learned to write two letters and can only recognize about five letters (although she can rote spell her name out loud, she is inconsistent when it comes to actually recognizing the individual letters in her name). In our opinion, we have not seen any progress in Clare academically. One of the ABA specialists for the school was at the meeting as well, and she agreed that ABA would be a great way to help Clare learn her letters and numbers and is eager to start working with Clare. We have another meeting scheduled at the end of this week to formally amend Clare's IEP to include more academic goals and add ABA services. I am excited to see what progress Clare makes after beginning ABA services. And, after this meeting, I felt like we were finally working as a team to help Clare, and it is not her parents versus her teachers. I definitely felt much better leaving the meeting!
With all the concern over Clare's academic progress, I find myself sinking back into a Williams syndrome hole of pity at times. I have often said I wish we could put Clare back into her special preschool bubble, but that is for my sake, not hers. In that bubble, I know the other parents aren't looking at me wondering what the heck is up with that girl. In this new mainstreamed life, I am not so confident that the other parents aren't asking those questions. In reality, they probably could care less, but I still feel like we scream DIFFERENT!
Clare went to her first kindergarten "girls only" birthday party. It was a pony party at a barn, so I figured there would be some riding involved. Clare was beside herself with excitement about the birthday party and riding a horse. She was wound up by the time we arrived at the party and was running around everywhere. The other girls at the party were a little more subdued, but I couldn't fault Clare her excitement. The owner of the barn was a little gruff and had so many rules for the girls - no running, no screaming, no yelling, no feeding the horses, don't walk behind the horses, etc. I could barely remember all the rules, never mind expect Clare to remember them. When it came time to riding the ponies, I asked the woman if I could walk beside Clare in the ring (there was no one doing this, just someone leading the pony). She told me that was not possible, so I explained that Clare has some balance issues. She basically cut me off and said, "She'll be fine, we've done this before." And Clare was fine. She did a great job and loved every minute of it! She couldn't wait for her turn again. I, on the other hand, fought back tears and had to walk away for a moment before I really lost it. A couple of parents asked me if I was okay. My neighbor (whose daughter is in Clare's class) was very sweet and gave me a hug and told me that Clare was loving it and doing fine (she was the only parent there who knows about Clare). I know I looked like a crazy mom crying over my daughter riding a horse, but I was so full of mixed emotions. Scared of letting go and trusting that Clare would be okay (in the hands of a stranger who brushed my concerns aside). The realization that, although Clare had a great time at the party, none of the girls really played with her, and she was my buddy throughout the party. And joy that Clare loved every minute of the party.
I have to remind myself that it's not my perception of Clare being left out that counts - it's HER perception that really matters. And she does not feel left out. Maybe she will later in her life. I don't know. But right now, she enjoys being in the moment and does not worry about what others think. Clare does not hide her emotions. If she is happy, you know it. Excited, doubly so. And upset, triple! I know I could take a few lessons from Clare.
With all the concern over Clare's academic progress, I find myself sinking back into a Williams syndrome hole of pity at times. I have often said I wish we could put Clare back into her special preschool bubble, but that is for my sake, not hers. In that bubble, I know the other parents aren't looking at me wondering what the heck is up with that girl. In this new mainstreamed life, I am not so confident that the other parents aren't asking those questions. In reality, they probably could care less, but I still feel like we scream DIFFERENT!
Clare went to her first kindergarten "girls only" birthday party. It was a pony party at a barn, so I figured there would be some riding involved. Clare was beside herself with excitement about the birthday party and riding a horse. She was wound up by the time we arrived at the party and was running around everywhere. The other girls at the party were a little more subdued, but I couldn't fault Clare her excitement. The owner of the barn was a little gruff and had so many rules for the girls - no running, no screaming, no yelling, no feeding the horses, don't walk behind the horses, etc. I could barely remember all the rules, never mind expect Clare to remember them. When it came time to riding the ponies, I asked the woman if I could walk beside Clare in the ring (there was no one doing this, just someone leading the pony). She told me that was not possible, so I explained that Clare has some balance issues. She basically cut me off and said, "She'll be fine, we've done this before." And Clare was fine. She did a great job and loved every minute of it! She couldn't wait for her turn again. I, on the other hand, fought back tears and had to walk away for a moment before I really lost it. A couple of parents asked me if I was okay. My neighbor (whose daughter is in Clare's class) was very sweet and gave me a hug and told me that Clare was loving it and doing fine (she was the only parent there who knows about Clare). I know I looked like a crazy mom crying over my daughter riding a horse, but I was so full of mixed emotions. Scared of letting go and trusting that Clare would be okay (in the hands of a stranger who brushed my concerns aside). The realization that, although Clare had a great time at the party, none of the girls really played with her, and she was my buddy throughout the party. And joy that Clare loved every minute of the party.
I have to remind myself that it's not my perception of Clare being left out that counts - it's HER perception that really matters. And she does not feel left out. Maybe she will later in her life. I don't know. But right now, she enjoys being in the moment and does not worry about what others think. Clare does not hide her emotions. If she is happy, you know it. Excited, doubly so. And upset, triple! I know I could take a few lessons from Clare.
Wednesday, October 06, 2010
Settling In
We have a month of school under our belt and are fairly well-settled into our school routines. As much as I miss the laziness of summer mornings (when I didn't have to drink my cup of coffee while running around the kitchen making breakfasts, packing lunches, and getting kids dressed and out the door to school), I love having a routine to our day. I love knowing that there will be chaos for about two hours until Jamie and Clare are at school, then we are more leisurely for a couple hours, followed by the lunch rush, then another break during the "quiet time" in our house before all four kids are together again in the afternoon for the pre-dinner rowdiness. It's all nice and predictable, and I am confident I can get through the crazy parts because I know those quieter times are coming.
We have received Jamie's progress report, and it was superior. He enjoys his new teacher, is thrilled that his class includes some new students (last year, there were only 11 children in his first grade), and is excited about learning to play the recorder this year. He chose a yellow recorder (which is actually quite ugly!) and likes to study the accompanying book so he can figure out new notes to play before he learns them in music class. I am still interested in getting Jamie involved in piano lessons, but I want to see what the indoor soccer schedule is like before we commit to another activity. The fall outdoor recreational league has a few more weeks left, so indoor is still a month away.
I attended the Curriculum Night at Simon's preschool last night. The teacher went into more detail about the day's schedule, the themes of each morning, the activities the children could look forward to. I know Simon is doing well in school. He loves it! There are still children who sob as they enter the classroom, but Simon is so eager to go and asks every day if it's a school day. The children have paper hand prints on the wall and, whenever they do a kind deed, they get to put a sticker on their "Helping Hand." Proud mama saw last night that Simon had four stickers - the most in his class! We have our challenging moments with Simon at home, but I am glad that, at school, he is that sweet boy I know is in there somewhere! Simon is looking forward to his first chance to be the Star of the Day (special helper at school), which happens to coincide on October 28, the Feast of St. Simon and the preschool's Halloween party. (And Jamie's school's Pie and Bingo Night - Simon believes his amazing parents planned all this just for his feast day when the other kids only got to choose a special dessert on their feast day. You try explaining coincidence to a 3-year old.)
Clare loves kindergarten. She is making new friends and has been invited to her first birthday party (a "pony party" where she will get to ride a horse for the first time - she cannot wait!). I wish mom and dad were as enamored with kindergarten. After my panic attack following the Open House, we formulated our plan. I spent 40 minutes on the phone with a fellow WS-mom and received so much good advice. That led us to do three major things - send a formal letter to the school requesting some evaluations and testing (among other assessments, the district bypassed giving Clare the kindergarten assessment since she had an IEP - which, now I know, was a mistake to just okay that), make an appointment for Clare to do the three-day Williams Syndrome Clinic out of Children's Hospital Boston in November, and finalize our plans to take Clare back to Dr. Mervis in Louisville, Kentucky over February break. Shawn also talked to Dr. Mervis over the phone, since February is a long way away and we need to see how Clare is doing now. She was able to give him some insight in where Clare should be academically as opposed to where the school expected her to be. So we have our appointments with the WS-experts scheduled, and we are waiting to hear back from Clare's school about a meeting date with her special education team to discuss Clare's progress and where to go from here.
After hearing Dr. Mervis' thoughts and talking to other parents, I am much calmer about the status of Clare's education, but I still feel there is more we can be doing for her. At home, our primary academic focus is to engage Clare in wanting to learn her alphabet and be excited about recognizing letters. I purchased an alphabet music CD, alphabet charts, and Leap Frog's Letter Factory DVD (thanks for the recommendation!). I hope that by immersing Clare in a variety of ways (auditory, visual, and tactile), we can make some progress. Clare learns differently than typical kids do. I see this every day, especially since Simon could recognize every upper case letter by the age of 2.5 and can recognize all the lower case ones a year later (and he learned this by us reading little ABC books together - nothing fancy or creative). That is our main point to the school - that Clare learns differently and needs different strategies to help her learn. This is where I think Clare's IEP, and the school, is failing her right now. There is nothing in her IEP to address her alphabet. When I question that, the answer I keep receiving is that it is part of the standard kindergarten curriculum, so it does not need to be in her IEP. When I questioned the special education teacher again about this, she stated that Clare will be "exposed" (her word) to it in the curriculum so I shouldn't worry. I argued that exposed does not mean Clare will learn it. Clare is exposed to Mandarin Chinese when she watches Ni Hao, Kai-lan but she certainly is not learning Chinese. So the next step is a meeting at the school, and we will stay tuned!
We have received Jamie's progress report, and it was superior. He enjoys his new teacher, is thrilled that his class includes some new students (last year, there were only 11 children in his first grade), and is excited about learning to play the recorder this year. He chose a yellow recorder (which is actually quite ugly!) and likes to study the accompanying book so he can figure out new notes to play before he learns them in music class. I am still interested in getting Jamie involved in piano lessons, but I want to see what the indoor soccer schedule is like before we commit to another activity. The fall outdoor recreational league has a few more weeks left, so indoor is still a month away.
I attended the Curriculum Night at Simon's preschool last night. The teacher went into more detail about the day's schedule, the themes of each morning, the activities the children could look forward to. I know Simon is doing well in school. He loves it! There are still children who sob as they enter the classroom, but Simon is so eager to go and asks every day if it's a school day. The children have paper hand prints on the wall and, whenever they do a kind deed, they get to put a sticker on their "Helping Hand." Proud mama saw last night that Simon had four stickers - the most in his class! We have our challenging moments with Simon at home, but I am glad that, at school, he is that sweet boy I know is in there somewhere! Simon is looking forward to his first chance to be the Star of the Day (special helper at school), which happens to coincide on October 28, the Feast of St. Simon and the preschool's Halloween party. (And Jamie's school's Pie and Bingo Night - Simon believes his amazing parents planned all this just for his feast day when the other kids only got to choose a special dessert on their feast day. You try explaining coincidence to a 3-year old.)
Clare loves kindergarten. She is making new friends and has been invited to her first birthday party (a "pony party" where she will get to ride a horse for the first time - she cannot wait!). I wish mom and dad were as enamored with kindergarten. After my panic attack following the Open House, we formulated our plan. I spent 40 minutes on the phone with a fellow WS-mom and received so much good advice. That led us to do three major things - send a formal letter to the school requesting some evaluations and testing (among other assessments, the district bypassed giving Clare the kindergarten assessment since she had an IEP - which, now I know, was a mistake to just okay that), make an appointment for Clare to do the three-day Williams Syndrome Clinic out of Children's Hospital Boston in November, and finalize our plans to take Clare back to Dr. Mervis in Louisville, Kentucky over February break. Shawn also talked to Dr. Mervis over the phone, since February is a long way away and we need to see how Clare is doing now. She was able to give him some insight in where Clare should be academically as opposed to where the school expected her to be. So we have our appointments with the WS-experts scheduled, and we are waiting to hear back from Clare's school about a meeting date with her special education team to discuss Clare's progress and where to go from here.
After hearing Dr. Mervis' thoughts and talking to other parents, I am much calmer about the status of Clare's education, but I still feel there is more we can be doing for her. At home, our primary academic focus is to engage Clare in wanting to learn her alphabet and be excited about recognizing letters. I purchased an alphabet music CD, alphabet charts, and Leap Frog's Letter Factory DVD (thanks for the recommendation!). I hope that by immersing Clare in a variety of ways (auditory, visual, and tactile), we can make some progress. Clare learns differently than typical kids do. I see this every day, especially since Simon could recognize every upper case letter by the age of 2.5 and can recognize all the lower case ones a year later (and he learned this by us reading little ABC books together - nothing fancy or creative). That is our main point to the school - that Clare learns differently and needs different strategies to help her learn. This is where I think Clare's IEP, and the school, is failing her right now. There is nothing in her IEP to address her alphabet. When I question that, the answer I keep receiving is that it is part of the standard kindergarten curriculum, so it does not need to be in her IEP. When I questioned the special education teacher again about this, she stated that Clare will be "exposed" (her word) to it in the curriculum so I shouldn't worry. I argued that exposed does not mean Clare will learn it. Clare is exposed to Mandarin Chinese when she watches Ni Hao, Kai-lan but she certainly is not learning Chinese. So the next step is a meeting at the school, and we will stay tuned!
Friday, September 17, 2010
Mainstreaming is NOT for Wimps
I attended the open house at Clare's school. I admit I was not in the best frame of mind going there since I had two sick kids at home, a husband suffering an allergy attack, and I myself had just gotten over a virus and was still pretty wiped out. Yet I did not want to miss Clare's first open house in her new school. I could manage the hour. Or so I thought.
Clare's kindergarten teacher passed out the children's folders of work completed in their first nine days of school. Included in the folder was an outline of what they would be working on literacy-wise in their first twelve weeks of kindergarten. As I quickly thumbed through the pages, I mentally thought "skip this, skip this, skip this, Clare is not there yet." It was all about lower case letter recognition and formation. Clare does not even recognize her upper case letters (except C, for obvious reasons), never mind writing any of them. How is she going to start learning lower case?
The teacher described their day, what they are working on, learning to sight read words, writing letters, writing their names, and simple math concepts. When she said the word "math," my brain went into panic mode again. Math? Clare can rote count to ten, but still has difficulty looking at objects and counting them. She often loses her place or just continues to rote count, even when she's passed the number of objects. Forget about math - she does not recognize or write any numbers. At this point, I admit I tuned the teacher out for the most part and concentrated instead on not crying. Which involves a lot of jaw-clenching, biting the inside of my cheek, and looking at whatever is hanging from the ceiling.
At the beginning of her presentation, the teacher had quickly introduced one of the reading specialists for the school. Aah... there was someone I would love to talk to. So after the presentation was complete, I made a beeline for this woman. I introduced myself and explained that I knew Clare would not be reading by the end of kindergarten. So what happens then? I babbled some stuff about her IEP, getting some extra reading services, blah, blah, blah. The woman was very kind, but she looked at me as if I was neurotic. As in, what is wrong with this mother who nine days into kindergarten is already freaking out that her daughter cannot read? I told her I knew I was jumping the gun a bit, but I wanted to give Clare the best chance to keep up with her classmates the best I could. I told her how we purchased an alphabet and phonics music program to work on with Clare at home. Clare is not really even interested in learning her letters, so her private speech therapist and I thought a program based on music would spark her interest. At this point, the kind lady (who really was kind, but who obviously thought I was a fruitcake and was just placating me by this point) told me that she really only worked with students in grades 1-5, that she had many students who needed help, and if Clare needed help once she was in first grade, she would see her then. Then she told me that she had met Clare briefly because her son was in Clare's kindergarten class and that she thought Clare was a doll. She then excused herself to talk to the teacher about her own child.
Now I really wanted to cry. I had no idea this woman was in the classroom as a parent, not as a specialist. The kindergarten teacher had introduced her to the class, so I assumed she was there to answer any questions about reading. Now she would have this idea in her head of what kind of parent she thought I was. (Add to that my already sensitive self-consciousness over Clare's school speech therapist witnessing both Clare and Simon having a temper tantrum, complete with hitting in each other, in the school hallway two days ago.)
Mainstreaming... that's the term for what we are doing with Clare. Inclusion. There's another term. My term is "trying to be as normal as we can get." But none of it's normal. None of it's typical. None of it's easy. I have so many doubts now about whether Clare really can be included. I know deep down in my heart she can, she will, and I feel (hope, wish, want) this is what is best for her. And I know we are only nine days into the process. I just never knew it would be this hard. I want to put Clare back into her safe, little, special ed preschool bubble - where she loved school, the teachers loved her, I had no idea where Clare stood skills-wise as opposed to the rest of her classmates and it didn't matter because Clare was progressing as Clare needed to progress. Not as the teachers needed her to progress or how I needed her to progress.
I had a good cry in the car on the way home from the open house. In the morning, Shawn and I discussed it, and I had another good cry. I hope all the crying and feeling sorry for myself is now out of my system for the time being, and we can start figuring out what we're going to do about all this mainstreaming stuff.
Clare's kindergarten teacher passed out the children's folders of work completed in their first nine days of school. Included in the folder was an outline of what they would be working on literacy-wise in their first twelve weeks of kindergarten. As I quickly thumbed through the pages, I mentally thought "skip this, skip this, skip this, Clare is not there yet." It was all about lower case letter recognition and formation. Clare does not even recognize her upper case letters (except C, for obvious reasons), never mind writing any of them. How is she going to start learning lower case?
The teacher described their day, what they are working on, learning to sight read words, writing letters, writing their names, and simple math concepts. When she said the word "math," my brain went into panic mode again. Math? Clare can rote count to ten, but still has difficulty looking at objects and counting them. She often loses her place or just continues to rote count, even when she's passed the number of objects. Forget about math - she does not recognize or write any numbers. At this point, I admit I tuned the teacher out for the most part and concentrated instead on not crying. Which involves a lot of jaw-clenching, biting the inside of my cheek, and looking at whatever is hanging from the ceiling.
At the beginning of her presentation, the teacher had quickly introduced one of the reading specialists for the school. Aah... there was someone I would love to talk to. So after the presentation was complete, I made a beeline for this woman. I introduced myself and explained that I knew Clare would not be reading by the end of kindergarten. So what happens then? I babbled some stuff about her IEP, getting some extra reading services, blah, blah, blah. The woman was very kind, but she looked at me as if I was neurotic. As in, what is wrong with this mother who nine days into kindergarten is already freaking out that her daughter cannot read? I told her I knew I was jumping the gun a bit, but I wanted to give Clare the best chance to keep up with her classmates the best I could. I told her how we purchased an alphabet and phonics music program to work on with Clare at home. Clare is not really even interested in learning her letters, so her private speech therapist and I thought a program based on music would spark her interest. At this point, the kind lady (who really was kind, but who obviously thought I was a fruitcake and was just placating me by this point) told me that she really only worked with students in grades 1-5, that she had many students who needed help, and if Clare needed help once she was in first grade, she would see her then. Then she told me that she had met Clare briefly because her son was in Clare's kindergarten class and that she thought Clare was a doll. She then excused herself to talk to the teacher about her own child.
Now I really wanted to cry. I had no idea this woman was in the classroom as a parent, not as a specialist. The kindergarten teacher had introduced her to the class, so I assumed she was there to answer any questions about reading. Now she would have this idea in her head of what kind of parent she thought I was. (Add to that my already sensitive self-consciousness over Clare's school speech therapist witnessing both Clare and Simon having a temper tantrum, complete with hitting in each other, in the school hallway two days ago.)
Mainstreaming... that's the term for what we are doing with Clare. Inclusion. There's another term. My term is "trying to be as normal as we can get." But none of it's normal. None of it's typical. None of it's easy. I have so many doubts now about whether Clare really can be included. I know deep down in my heart she can, she will, and I feel (hope, wish, want) this is what is best for her. And I know we are only nine days into the process. I just never knew it would be this hard. I want to put Clare back into her safe, little, special ed preschool bubble - where she loved school, the teachers loved her, I had no idea where Clare stood skills-wise as opposed to the rest of her classmates and it didn't matter because Clare was progressing as Clare needed to progress. Not as the teachers needed her to progress or how I needed her to progress.
I had a good cry in the car on the way home from the open house. In the morning, Shawn and I discussed it, and I had another good cry. I hope all the crying and feeling sorry for myself is now out of my system for the time being, and we can start figuring out what we're going to do about all this mainstreaming stuff.
Wednesday, September 15, 2010
Facebook Makes Us Lazy
"Facebook makes us lazy." -- the wise, wise Kerry F.
Lazy, impersonal, idle, procrastinator, the list goes on and on.
When I read Kerry's words, it instantly hit me that she was right - Facebook makes us lazy. I am extremely vulnerable to being sucked into the vacuum of Facebook as soon as I click the link on my Favorites tab. I don't think there's anything wrong with Facebook or other social sites in general, but I believe that Facebook makes us lazy when it comes to our personal relationships.
I saw a good friend today for the first time in about two years. Put it this way - she had never met Violet (who is almost 20 months old). She lives about twenty minutes away, we have children the same age (we have older children with the same name!), and she has a daughter with heart disease as well. We should get together more often. As we parted today, she commented, "Thank goodness for Facebook." And she was right as well. This is where Facebook has some value - we have been able to stay in touch, keep somewhat up-to-date on each other's lives, and discuss books (a passion we share). But it also made me sad that sites such as Facebook make it so easy to stay connected via the internet that we don't make more of an effort to stay connected in person. To sit across from each other in a room and catch up while our children get to know each other by working on puzzles together (and sweet puppies shower us with affection!). No amount of status updates can keep a true friendship going. I am guilty of getting so swept up in my busy life with busy schedules and lots of busy things to do that I don't stop for one morning to forego all that busy-ness and just BE. I am glad we both made the effort today to see each other finally!
I feel as if I am at a turning point in my life in some small way (getting all philosophical on you now). I have been evaluating my life, my values, my priorities, my reactions and emotions, and trying to take stock of what's really important and of true value in my life. There is nothing earth-shattering I need to change, but there are lots of little things that I want to work on. Having fun and unwinding on Facebook is all fine and good, but it has its place and I want to make sure it's a small place in my life and not let it be a poor substitute for my life.
Lazy, impersonal, idle, procrastinator, the list goes on and on.
When I read Kerry's words, it instantly hit me that she was right - Facebook makes us lazy. I am extremely vulnerable to being sucked into the vacuum of Facebook as soon as I click the link on my Favorites tab. I don't think there's anything wrong with Facebook or other social sites in general, but I believe that Facebook makes us lazy when it comes to our personal relationships.
I saw a good friend today for the first time in about two years. Put it this way - she had never met Violet (who is almost 20 months old). She lives about twenty minutes away, we have children the same age (we have older children with the same name!), and she has a daughter with heart disease as well. We should get together more often. As we parted today, she commented, "Thank goodness for Facebook." And she was right as well. This is where Facebook has some value - we have been able to stay in touch, keep somewhat up-to-date on each other's lives, and discuss books (a passion we share). But it also made me sad that sites such as Facebook make it so easy to stay connected via the internet that we don't make more of an effort to stay connected in person. To sit across from each other in a room and catch up while our children get to know each other by working on puzzles together (and sweet puppies shower us with affection!). No amount of status updates can keep a true friendship going. I am guilty of getting so swept up in my busy life with busy schedules and lots of busy things to do that I don't stop for one morning to forego all that busy-ness and just BE. I am glad we both made the effort today to see each other finally!
I feel as if I am at a turning point in my life in some small way (getting all philosophical on you now). I have been evaluating my life, my values, my priorities, my reactions and emotions, and trying to take stock of what's really important and of true value in my life. There is nothing earth-shattering I need to change, but there are lots of little things that I want to work on. Having fun and unwinding on Facebook is all fine and good, but it has its place and I want to make sure it's a small place in my life and not let it be a poor substitute for my life.
Tuesday, September 14, 2010
Left Behind
IEP goal: By June 2011, Clare will be able to ascend stairs with a reciprocal pattern without a rail and descend stairs with a reciprocal pattern with one rail with verbal cues.
There is a lot of hurrying that goes on in our house. Hurrying to get out the door to bring three kids to three different schools. Hurrying to pick children back up, make lunch, and get the little ones down for naps before it's time to get Jamie from school. Hurrying to make it to soccer practice on time (since Jamie's new coach is a little bit of a... drill sergeant). Hurrying to clean up, take baths, brush teeth, tuck everyone in. There are also a lot of stairs in our house, so a good portion of this hurrying is done going up and down the stairs. Even when we are not in a rush, the boys naturally fly past Clare on the stairs, and I often find myself doing the same. I will brush past Clare as she slowly makes her way down the garage staircase, gripping the handrail one foot down the second to join then onto the next step. I buckle Violet into her car seat, buckle Simon in, then I will go back to offer Clare a hand to hurry her descent down the stairs.
The other day, I was going down to the basement to switch some laundry from the washer to the dryer. Clare was ahead of me making her way down to the playroom. I went to pass her so I could get my chore done when I realized what I was doing. Was I in that much of a rush to get to the laundry that I could not wait for two minutes while Clare navigated the stairs? Did we always have to rush past Clare, leaving her behind by herself? Would she forever be last, everyone passing her by without a second thought?
I know - heavy thoughts on walking down the stairs. But it reminded me that there is value in taking our time. To Clare, she could slide down the stairs on her bottom, making it from top to bottom in about 20 seconds (and sounding like tap-dancing hippos doing so). But she is working so hard at home and at school to ascend and descend stairs by herself. Right now, she does so by holding the railing with one hand and carefully doing her one step with both feet at a time. Her next goal will be to do it reciprocally (as in one foot on one step, the opposite foot to the next step, you get the picture). Then working her way to going upstairs without holding a rail, and downstairs only holding the rail (right now, she is very unsure about going downstairs without holding a rail and someone's hand - she will do it, but she goes very cautiously). The ultimate goal someday is that Clare can go up and down stairs carrying her schoolbooks.
It still gives me some heartache when I think of all the things that the majority of our bodies do and learn naturally, but that Clare has to work so hard at learning. My heartache is for her that it just can't come easy for her. But just as there is value in taking our time doing something, there is also so much value in working hard to accomplish something. Even something as mundane as walking up and down the stairs. I know Clare is going to be left behind in some way or another time and time again. But I don't have to do that to her. I can walk with her down the stairs and hold her hand to make her descent easier for her. Or I can walk behind her, be patient, and have the chance to marvel at her determination in doing this on her own.
There is a lot of hurrying that goes on in our house. Hurrying to get out the door to bring three kids to three different schools. Hurrying to pick children back up, make lunch, and get the little ones down for naps before it's time to get Jamie from school. Hurrying to make it to soccer practice on time (since Jamie's new coach is a little bit of a... drill sergeant). Hurrying to clean up, take baths, brush teeth, tuck everyone in. There are also a lot of stairs in our house, so a good portion of this hurrying is done going up and down the stairs. Even when we are not in a rush, the boys naturally fly past Clare on the stairs, and I often find myself doing the same. I will brush past Clare as she slowly makes her way down the garage staircase, gripping the handrail one foot down the second to join then onto the next step. I buckle Violet into her car seat, buckle Simon in, then I will go back to offer Clare a hand to hurry her descent down the stairs.
The other day, I was going down to the basement to switch some laundry from the washer to the dryer. Clare was ahead of me making her way down to the playroom. I went to pass her so I could get my chore done when I realized what I was doing. Was I in that much of a rush to get to the laundry that I could not wait for two minutes while Clare navigated the stairs? Did we always have to rush past Clare, leaving her behind by herself? Would she forever be last, everyone passing her by without a second thought?
I know - heavy thoughts on walking down the stairs. But it reminded me that there is value in taking our time. To Clare, she could slide down the stairs on her bottom, making it from top to bottom in about 20 seconds (and sounding like tap-dancing hippos doing so). But she is working so hard at home and at school to ascend and descend stairs by herself. Right now, she does so by holding the railing with one hand and carefully doing her one step with both feet at a time. Her next goal will be to do it reciprocally (as in one foot on one step, the opposite foot to the next step, you get the picture). Then working her way to going upstairs without holding a rail, and downstairs only holding the rail (right now, she is very unsure about going downstairs without holding a rail and someone's hand - she will do it, but she goes very cautiously). The ultimate goal someday is that Clare can go up and down stairs carrying her schoolbooks.
It still gives me some heartache when I think of all the things that the majority of our bodies do and learn naturally, but that Clare has to work so hard at learning. My heartache is for her that it just can't come easy for her. But just as there is value in taking our time doing something, there is also so much value in working hard to accomplish something. Even something as mundane as walking up and down the stairs. I know Clare is going to be left behind in some way or another time and time again. But I don't have to do that to her. I can walk with her down the stairs and hold her hand to make her descent easier for her. Or I can walk behind her, be patient, and have the chance to marvel at her determination in doing this on her own.
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