Yesterday Roo and I were at the hospital for her blood draw. When she was born with TMD (Transient Myeloproliferative Disorder), she had daily blood draws to check her white blood cell counts and other factors. At one point during our 2 month stay in the NICU, the Hematologist (we had 3 who rotated days) in the department that day told me I would need to bring Roo in up to 3 times a week for additional blood draws after she was released. Three times a week! Then over time, and as she continued to make progress and her overall health got better, but before we left the NICU, the doctors told me she should come every other month for a blood draw. After feeling relieved at the change in that schedule, I got worried. How could we possibly have gone so quickly from needing to be tested multiple times a week to every other month? Were they sure they had the right patient? Even every other month was no breeze, though, especially given an infant with a G-tube and multiple, timed meds, plus a 1st grader to consider as well. But we did go back, every other month, for at least a year (my mind is foggier now), and thankfully, every time her counts were normal. Then after a year, we were able to go to every 3 months, then eventually every 6 months and finally, annually. At age six, she was technically released from being a patient of the Hematology/Oncology Clinic because her counts had been consistently in the normal range for years, even with many pouts of petechiae (tiny dots on her face and chest from broken blood vessels, usually in her case caused by crying or coughing), and a post fever rash that her Pediatrician thought might indicate that something was going haywire in her blood.
It's always a great thing to be released from a specialty clinic, even if the thought of that is daunting. When she was 2, she was released from Cardiology. She was not born with a heart defect but she had complications from the TMD and a small hole. After doing follow up testing at age two and seeing that the small hole had formed a membrane and there were no other cardiac concerns, she was released. I shook the Cardiologist's hand, thanked him for his care and support for her and wished him a nice life. I did the same with the Hematologist when Roo turned 6, but here we are again going annually.
Add to the plot is the need for thyroid screening twice a year. She takes Synthroid daily and has since she was a newborn. I have an arrangement with her Endocrinologist to tack on a CBC with diff every time he writes an order for her thyroid labs, just to be on the safe side. Last year her WBC (white blood cell count) and MCV (mean corpuscular volume or volume of red blood cells) were off. Her WBC was lower than normal and her MCV was higher than normal. Because of this I contacted Hem/Onc and they told me to bring her in. She was fine otherwise but those lab results earned us another visit. After her check-up and a discussion of the lab results, it was recommended that I bring her back again a year later. That brings us to this week. Thankfully this time around her WBC is in the normal range and her MCV, although slightly elevated, is not concerning because it's coming down and is close to the normal range. It was again recommended that I bring her back in a year from now. So she went from a "graduate" of the clinic to back on the patient rolls again, but I'm not complaining. I'll take her to a Hem/Onc clinic every year I'm on this earth if that helps to keep her healthy.
But, as the title indicates, there is a toll on me every time I walk through the door of the clinic. They are truly wonderful people there and I don't mind the inevitable long wait time given the severity of what most of their other patients are facing. What I mind is my own internal workings, my inner demons that give me a bout of PTSD for want of a better description every time we cross that threshold. The day before our appointment each and every time I have a case of the "what ifs," what if she has developed full blown leukemia, what will that do to her, what further complications will that cause, and will she survive? It's not that I don't have faith and it's not that I am the type of person that always fears the worst. It's just that the memories made during her first few months out of my womb, and the overwhelming stress on my psyche, are seared into my brain.
I am so very thankful for how far she has come, and I can't imagine what families go through day in day out for years with their medically fragile children. But, all my fears, sorrow and struggles to cope come back to me in a flash when we walk into that clinic.
Thursday, March 17, 2011
Monday, March 14, 2011
Walking a fine line
Marisa went to an inclusive Montessori preschool where she was loved and supported by great staff, great parents, and a great group of kids. She certainly had issues there, especially being overly physical with some of the kids, but overall it was a great two years, and I was very sad to move her on from that loving environment out into the big world. We had two choices to consider for Kindergarten, our church school, which Nadia went to from K-8, or our public, neighborhood school. If I had placed her at our church school I would have had one blissful year with both kids at the same location, but alas, that was not to be. Nadia graduated from 8th grade last year and moved on out into the bigger world herself.
I chose the public school for Kindergarten for several reasons. It was a half-day program and our church school was full-day. The K teacher at our church school is a lovely woman but I could sense that she wasn't sure if she could handle having Roo in her class (big red flag!); and our school district promised me what I call the Holy Grail of Special Education : placement in the regular classroom in our neighborhood school with supports and services brought into the classroom to Roo. I had fought long and hard for this, attended multiple transition to Kindergarten and IEP workshops,and did everything I could think of just shy of finding a local disabilities rights attorney to make sure my child would be included with her typical peers. Our school district maintains several "program" classes, including a self-contained class in a grade school not far from our home, but not in our neighborhood. I know many of the families who have had kids in that class and they are lovely families with great kids, but I was not going to agree to have that as Marisa's placement. Even if I weren't a supporter of inclusion, the idea of placing a kid with a speech delay and challenging behaviors into a classroom of K through 5th graders with the same issues, just did not appeal to me. I knew it would not be right for her and that she would not make adequate progress in that environment. So, I pushed ahead with letting the district know exactly what I expected in terms of her placement and that I knew our rights and the law. They did inform me that behavior would be the factor that would determine whether or not she could remain in the regular classroom, and I said I would cross that bridge if and when we got to it.
We made it 2 months in the regular classroom at our neighborhood school. I won't bash the school or the staff there. They did try to support her, and I know that at least some of them even grew to love her in the short time she was there. The Principal was truly awesome and I stayed in contact with her for a while after we left, just to let her know the progress Marisa was making at home with me. The problem was that my district did not provide her with the additional support she needed to be successful in that environment. Just prior to the 4th IEP meeting in 2 months, all dealing with behavioral issues, I submitted a letter, cc'd to the director of special ed for the district and the school Principal, formally requesting a one on one aid to help Marisa meet the goals on her behavioral support plan. In the letter I quoted from case law that specifically states that behavior alone cannot be used as an excuse to pull a child out of an inclusive setting. My request was denied, I think on a technicality, and when that happened I could see the writing on the wall and could sense the uphill battle facing me if I tried to go further. I knew the district wanted to remove Marisa and place her in the self-contained classroom. So, rather than let that happen, I homeschooled her for the remainder of the year, and I don't regret that for a second.
Now I am thinking that sensory dysfunction played a role in her inability to thrive in the regular classroom last year. That and not having enough one on one time with someone qualified to work successfully with her. She just could not self-regulate enough to be able to keep herself together in that setting, and the school was unable to provide her with the support she needed. We didn't (still don't) have the money to go into a drawn out legal battle with our district, even though I believe the law would have been on our side.
I know Inclusion can and does work for many children, and it is the right thing to do. But for my sweet girl, bogged down with too many factors that make sitting still and being quiet in a seat in a large and exciting classroom, full day inclusion just isn't the best option.
I chose the public school for Kindergarten for several reasons. It was a half-day program and our church school was full-day. The K teacher at our church school is a lovely woman but I could sense that she wasn't sure if she could handle having Roo in her class (big red flag!); and our school district promised me what I call the Holy Grail of Special Education : placement in the regular classroom in our neighborhood school with supports and services brought into the classroom to Roo. I had fought long and hard for this, attended multiple transition to Kindergarten and IEP workshops,and did everything I could think of just shy of finding a local disabilities rights attorney to make sure my child would be included with her typical peers. Our school district maintains several "program" classes, including a self-contained class in a grade school not far from our home, but not in our neighborhood. I know many of the families who have had kids in that class and they are lovely families with great kids, but I was not going to agree to have that as Marisa's placement. Even if I weren't a supporter of inclusion, the idea of placing a kid with a speech delay and challenging behaviors into a classroom of K through 5th graders with the same issues, just did not appeal to me. I knew it would not be right for her and that she would not make adequate progress in that environment. So, I pushed ahead with letting the district know exactly what I expected in terms of her placement and that I knew our rights and the law. They did inform me that behavior would be the factor that would determine whether or not she could remain in the regular classroom, and I said I would cross that bridge if and when we got to it.
We made it 2 months in the regular classroom at our neighborhood school. I won't bash the school or the staff there. They did try to support her, and I know that at least some of them even grew to love her in the short time she was there. The Principal was truly awesome and I stayed in contact with her for a while after we left, just to let her know the progress Marisa was making at home with me. The problem was that my district did not provide her with the additional support she needed to be successful in that environment. Just prior to the 4th IEP meeting in 2 months, all dealing with behavioral issues, I submitted a letter, cc'd to the director of special ed for the district and the school Principal, formally requesting a one on one aid to help Marisa meet the goals on her behavioral support plan. In the letter I quoted from case law that specifically states that behavior alone cannot be used as an excuse to pull a child out of an inclusive setting. My request was denied, I think on a technicality, and when that happened I could see the writing on the wall and could sense the uphill battle facing me if I tried to go further. I knew the district wanted to remove Marisa and place her in the self-contained classroom. So, rather than let that happen, I homeschooled her for the remainder of the year, and I don't regret that for a second.
Now I am thinking that sensory dysfunction played a role in her inability to thrive in the regular classroom last year. That and not having enough one on one time with someone qualified to work successfully with her. She just could not self-regulate enough to be able to keep herself together in that setting, and the school was unable to provide her with the support she needed. We didn't (still don't) have the money to go into a drawn out legal battle with our district, even though I believe the law would have been on our side.
I know Inclusion can and does work for many children, and it is the right thing to do. But for my sweet girl, bogged down with too many factors that make sitting still and being quiet in a seat in a large and exciting classroom, full day inclusion just isn't the best option.
Sunday, March 13, 2011
Behavior is communication
I am at the beginning of a quest to determine to what extent Roo's behavioral challenges have to do with sensory processing. She has had issues for quite a while now with "non-compliance," being too physical with other children, running away from caregivers, etc. The difficult thing when a child has an underlying, and highly complicating, condition like Down syndrome (or Autism), is figuring out exactly when behaviors are sensory related and which are "learned" behaviors that developed in response to something affecting them, externally or internally. What I know now (wish I had known years ago!!!), is that parental or other caregiver response to a challenging behavior can reinforce it and turn it into a learned behavior. Once learned, whether or not it was initially sensory related, the behavior becomes more difficult to modify. Most behaviors manifest when a child is trying to obtain or to avoid something. Behavior is Communication is a mantra I didn't coin but do try to take to heart. The problem is that I am often confused by what exactly my darling now 8 year old is trying to communicate with her behavior.
When I went to pick Roo up on Friday to head off to the Speech Clinic, her aid told me she was not willing to work much at all with her that day. She said she was trying to introduce new concepts to her and that she became more non-compliant than usual. Not her words, but the gist of it. I told her that used to happen when I was homeschooling her last year. We'd be going along okay and then I'd try to move forward and she would dig in her heels and flat out refuse to do the work. This would go on for a day or two and then something would eventually click with her and we'd start to move forward. I recognize that she was trying to communicate with her behavior that the work was hard for her and she didn't want to try it. When that happens, I know (and now her aid knows) that it will take extra coaxing and lots of patience to get her going again. The great news about her aid is how much she has invested herself in helping Roo. I can tell that she loves her and wants the very best for her. Thank you God!
It is still often challenging to take Roo out by myself to a store or someplace with tons of distractions and stimuli. A few years ago I was talking with a mom of a little girl with Down syndrome a year younger than Roo. I mentioned in passing that we had finally started going to Starbuck's together and that it was going okay. She couldn't believe that it was so hard to go out with Roo by myself because she and her daughter did that often. Well, as with all our children, everyone is different, and what works well for some doesn't always for others. Now I'm starting to wonder if the root cause of Roo's less than desirable behavior when we would go to the mall or some other highly stimulating environment is that it was just too much for her. Too much noise, too much visual stimulation, just too much of everything bombarding her eyes, ears, etc. Put her in a big, open space like a mall and all she wants to do is dart away and go sprinting down through the middle. The silver lining in that is that there is hardly any fat on that little body! But, it makes for moments of sheer panic if I have to sprint off after her. My knees are not at all what they used to be!
I need to write a post on Inclusion because I have tons of thoughts on it, but will save that for another day. I truly believe educating kids with disabilities with their typical peers to the maximum extent possible is the best practice, and the right thing to do; but placement isn't one size fits all, and for my little darling, time spent out of the classroom, one on one with her loving aid, working on concepts at her pace and cognitive level is the best thing for her. Her team at school values her and does their best to give her time each day with her classmates, but I know the classroom environment is just too darn stimulating for her, in all ways imaginable, for her to be able to self-regulate enough to stay in the classroom the amount of time the other kids do. I am at the beginning of this journey, though, and am hoping that with lots of support, information, and assistance from people who know about sensory dysfunction, that we can all help Roo learn to help herself deal with what is overwhelming to her in her environment.
I attended Marisa's ISP planning meeting last Monday. It's called an ISP or Individual Services Plan instead of IEP because she is in a private school and does not receive the same amount/type of services she would in the public system. At the meeting, after hearing the difficulty her SLP and OT had in doing assessments on her, and after discussing her many behavioral challenges and sensory needs, her first grade teacher (love her!) closed the meeting by sharing that she believes Marisa is the best thing that has happened to her class this year. She said the kids love her and that they have grown in compassion and acceptance of differences so much thanks to getting to know her. After I wiped the tears of gratitude from my eyes, I left knowing that even the darkest days are no match to what I know is right for my beloved child.
When I went to pick Roo up on Friday to head off to the Speech Clinic, her aid told me she was not willing to work much at all with her that day. She said she was trying to introduce new concepts to her and that she became more non-compliant than usual. Not her words, but the gist of it. I told her that used to happen when I was homeschooling her last year. We'd be going along okay and then I'd try to move forward and she would dig in her heels and flat out refuse to do the work. This would go on for a day or two and then something would eventually click with her and we'd start to move forward. I recognize that she was trying to communicate with her behavior that the work was hard for her and she didn't want to try it. When that happens, I know (and now her aid knows) that it will take extra coaxing and lots of patience to get her going again. The great news about her aid is how much she has invested herself in helping Roo. I can tell that she loves her and wants the very best for her. Thank you God!
It is still often challenging to take Roo out by myself to a store or someplace with tons of distractions and stimuli. A few years ago I was talking with a mom of a little girl with Down syndrome a year younger than Roo. I mentioned in passing that we had finally started going to Starbuck's together and that it was going okay. She couldn't believe that it was so hard to go out with Roo by myself because she and her daughter did that often. Well, as with all our children, everyone is different, and what works well for some doesn't always for others. Now I'm starting to wonder if the root cause of Roo's less than desirable behavior when we would go to the mall or some other highly stimulating environment is that it was just too much for her. Too much noise, too much visual stimulation, just too much of everything bombarding her eyes, ears, etc. Put her in a big, open space like a mall and all she wants to do is dart away and go sprinting down through the middle. The silver lining in that is that there is hardly any fat on that little body! But, it makes for moments of sheer panic if I have to sprint off after her. My knees are not at all what they used to be!
I need to write a post on Inclusion because I have tons of thoughts on it, but will save that for another day. I truly believe educating kids with disabilities with their typical peers to the maximum extent possible is the best practice, and the right thing to do; but placement isn't one size fits all, and for my little darling, time spent out of the classroom, one on one with her loving aid, working on concepts at her pace and cognitive level is the best thing for her. Her team at school values her and does their best to give her time each day with her classmates, but I know the classroom environment is just too darn stimulating for her, in all ways imaginable, for her to be able to self-regulate enough to stay in the classroom the amount of time the other kids do. I am at the beginning of this journey, though, and am hoping that with lots of support, information, and assistance from people who know about sensory dysfunction, that we can all help Roo learn to help herself deal with what is overwhelming to her in her environment.
I attended Marisa's ISP planning meeting last Monday. It's called an ISP or Individual Services Plan instead of IEP because she is in a private school and does not receive the same amount/type of services she would in the public system. At the meeting, after hearing the difficulty her SLP and OT had in doing assessments on her, and after discussing her many behavioral challenges and sensory needs, her first grade teacher (love her!) closed the meeting by sharing that she believes Marisa is the best thing that has happened to her class this year. She said the kids love her and that they have grown in compassion and acceptance of differences so much thanks to getting to know her. After I wiped the tears of gratitude from my eyes, I left knowing that even the darkest days are no match to what I know is right for my beloved child.
Thursday, March 3, 2011
Eight years ago today.....
I guess I'll have to consider myself an occasional blogger. Had such high hopes of posting tidbits every day or at least every other, but that is just not happening. Oh well. What has been happening lately is that my little Roo Bug has been growing up before her family's eyes. Eight years ago today, at 10:54 pm, in a labor & delivery room at Meridian Park Hospital in suburban Portland, my life changed forever. It's funny that such a little bitty newborn baby girl (5 lbs/7 oz), who slipped into the world with a short labor and relatively easy delivery (okay so there was still plenty of pain but it was worth it), could have turned my world upside down, made me question if God hated me (low moments, sad to say), given me more stress than I thought could be possible in life, and yet prove to be one of the brightest stars in my own personal universe with the ability to make me rise above complacency and drive me, and others who have met her to a much broader worldview, more compassion, and greater zeal for those with challenges, the vulnerable, often lonely, and all too often under-served people with disabilities all around us.
My darling Marisa opened up a world to me that I had barely glimpsed before. I don't think I was ever, in any way, callous towards people with disabilities. I just did not take note of them. They and their families lived on the fringes of my little corner of the world. I knew a few families who had kids with Down syndrome, but only in passing. When Marisa was born, my thought of what it meant to have Down syndrome was that she would have some characteristic facial features and would need help with learning. I didn't have the slightest clue regarding the broad range of medical complications and also the broad range of abilities seen in what I now call the "spectrum" of Down syndrome. In her first two months out of the safety of my womb, I learned more medical vocabulary and met more medical specialists, social workers, case managers, lactation consultants, the list goes on and on, than I would probably have met in my life otherwise. The vast majority of these new people in our lives were totally supportive and respectful towards my new child. I did receive looks and/or comments implying pity now and then, but that wasn't the norm. Most of the professionals who worked with Marisa her first few years could not have done a better job of showing with their words and deeds that she deserved the best care regardless of her underlying diagnosis. I am so thankful for that!
So, fast forward to today. Today Marisa and I brought 3 dozen little pink frosted doughnuts (special ordered from Starbucks) to share with her classmates and teachers. A chorus of Happy Birthdays rang out as she walked into the school building. Her family took her to her favorite restaurant and she ate a Happy Cake Pancake for her birthday dinner, followed up by a slice of ice cream cake at home. Needless to say it's back to a more balanced diet tomorrow! I'm planning an all class party for her as soon as I figure out when and where. Basically life is good, especially if you're 8 years old.
I can't say it has been easy, and I also can't say there haven't been times when I have failed miserably as a parent and at times have not deserved her; but I thank God every day for the little, wonderful person born 8 years ago today.
My darling Marisa opened up a world to me that I had barely glimpsed before. I don't think I was ever, in any way, callous towards people with disabilities. I just did not take note of them. They and their families lived on the fringes of my little corner of the world. I knew a few families who had kids with Down syndrome, but only in passing. When Marisa was born, my thought of what it meant to have Down syndrome was that she would have some characteristic facial features and would need help with learning. I didn't have the slightest clue regarding the broad range of medical complications and also the broad range of abilities seen in what I now call the "spectrum" of Down syndrome. In her first two months out of the safety of my womb, I learned more medical vocabulary and met more medical specialists, social workers, case managers, lactation consultants, the list goes on and on, than I would probably have met in my life otherwise. The vast majority of these new people in our lives were totally supportive and respectful towards my new child. I did receive looks and/or comments implying pity now and then, but that wasn't the norm. Most of the professionals who worked with Marisa her first few years could not have done a better job of showing with their words and deeds that she deserved the best care regardless of her underlying diagnosis. I am so thankful for that!
So, fast forward to today. Today Marisa and I brought 3 dozen little pink frosted doughnuts (special ordered from Starbucks) to share with her classmates and teachers. A chorus of Happy Birthdays rang out as she walked into the school building. Her family took her to her favorite restaurant and she ate a Happy Cake Pancake for her birthday dinner, followed up by a slice of ice cream cake at home. Needless to say it's back to a more balanced diet tomorrow! I'm planning an all class party for her as soon as I figure out when and where. Basically life is good, especially if you're 8 years old.
I can't say it has been easy, and I also can't say there haven't been times when I have failed miserably as a parent and at times have not deserved her; but I thank God every day for the little, wonderful person born 8 years ago today.
Tuesday, February 1, 2011
Who defines quality of life?
I read a lot of blogs written by moms and dads of kids with Down syndrome. It's a form of therapy for me to see the lovely faces of the (usually) smiling kiddos, surrounded by their loved ones, going about their very "normal" lives. If I can ever get my act together, I'll post pix to this blog and make it more public so others can see my lovely kiddo too. She really is a charmer.
I posted recently about her behavioral challenges. That is a big issue in our lives, but only one small portion of who she is and what her life is about. She is also friendly, a dog lover, obsessed with Veggie Tales, enamored of anything pink, up for adventure at all times, a great hiking companion, an ever improving talker and reader; and someone who will brighten your day at the drop of a hat. I could go on, but then I'd be boasting. I know other moms and dads out there are pleased with their own lists of what their kids can do too. And, when I say that, I do not mean only the so-called abilities of their children. All children offer something to the world, no matter how complicated their lives seem to be to outsiders looking in.
We've all been reading more and more on the topic of the high rate of abortions in prenatally diagnosed babies with Down syndrome. Up to 90 percent is the latest statistic I've seen. What this suggests is that there are far too many expectant parents out there who do not have a clue what Down syndrome is and how it can affect the child the mother is carrying. They have no knowledge of the broad range of "abilities" in this community, and they will miss out on the many gifts their child will bring to them, no matter what. This also suggests an EPIC FAIL (otherwise known as a total failure, or a failure of spectacular proportions) on the part of the medical establishment to offer accurate information and supportive advice to the parents when delivering the prenatal diagnosis. What is wrong with this picture? Why aren't doctors and other caregivers trained to understand that the diagnosis of Down syndrome is absolutely not a reason to terminate? I won't even go there in terms of prenatal diagnoses that mean certain death, and/or extremely, medically fragile and complicated lives. If you believe abortion is wrong, then it is wrong in all cases, no matter what. If you believe a mother should have the right to choose, then by all means, make damn sure she has the information and support with which to make an informed choice.
I cannot speak to what it would feel like to receive a prenatal diagnosis. I had an ultrasound at 20 weeks that appeared "normal" and then, later, out popped little Miss, 9 days early, ready and willing to give me the education I needed to be her Mom, and opening my heart to all others in this world who come into the world with extra struggles.
I'm so tired of hearing of parents who terminate because they just know they couldn't handle a child with "special needs." Trust me, every child has "special needs." They will all test us, challenge us in ways we could not have imagined before becoming parents, and break our hearts at times. To try to shelter yourself from "imperfection," is to refuse to live, to refuse to embrace what it is to be fully alive.
I would not trade my child for anything, well, make that both my children, even the so-called typical one (!); and I would not change them if I could. What I would change is the culture around us that sends out a message that we can somehow live lives free from challenges, filled with "perfect" children, and never having to face an uphill battle. That is a fairy tale that none of us have actually experienced, and it's time to move on and to embrace human diversity in all its many, wondrous forms. We are truly all wonderfully made.
I posted recently about her behavioral challenges. That is a big issue in our lives, but only one small portion of who she is and what her life is about. She is also friendly, a dog lover, obsessed with Veggie Tales, enamored of anything pink, up for adventure at all times, a great hiking companion, an ever improving talker and reader; and someone who will brighten your day at the drop of a hat. I could go on, but then I'd be boasting. I know other moms and dads out there are pleased with their own lists of what their kids can do too. And, when I say that, I do not mean only the so-called abilities of their children. All children offer something to the world, no matter how complicated their lives seem to be to outsiders looking in.
We've all been reading more and more on the topic of the high rate of abortions in prenatally diagnosed babies with Down syndrome. Up to 90 percent is the latest statistic I've seen. What this suggests is that there are far too many expectant parents out there who do not have a clue what Down syndrome is and how it can affect the child the mother is carrying. They have no knowledge of the broad range of "abilities" in this community, and they will miss out on the many gifts their child will bring to them, no matter what. This also suggests an EPIC FAIL (otherwise known as a total failure, or a failure of spectacular proportions) on the part of the medical establishment to offer accurate information and supportive advice to the parents when delivering the prenatal diagnosis. What is wrong with this picture? Why aren't doctors and other caregivers trained to understand that the diagnosis of Down syndrome is absolutely not a reason to terminate? I won't even go there in terms of prenatal diagnoses that mean certain death, and/or extremely, medically fragile and complicated lives. If you believe abortion is wrong, then it is wrong in all cases, no matter what. If you believe a mother should have the right to choose, then by all means, make damn sure she has the information and support with which to make an informed choice.
I cannot speak to what it would feel like to receive a prenatal diagnosis. I had an ultrasound at 20 weeks that appeared "normal" and then, later, out popped little Miss, 9 days early, ready and willing to give me the education I needed to be her Mom, and opening my heart to all others in this world who come into the world with extra struggles.
I'm so tired of hearing of parents who terminate because they just know they couldn't handle a child with "special needs." Trust me, every child has "special needs." They will all test us, challenge us in ways we could not have imagined before becoming parents, and break our hearts at times. To try to shelter yourself from "imperfection," is to refuse to live, to refuse to embrace what it is to be fully alive.
I would not trade my child for anything, well, make that both my children, even the so-called typical one (!); and I would not change them if I could. What I would change is the culture around us that sends out a message that we can somehow live lives free from challenges, filled with "perfect" children, and never having to face an uphill battle. That is a fairy tale that none of us have actually experienced, and it's time to move on and to embrace human diversity in all its many, wondrous forms. We are truly all wonderfully made.
Thursday, January 20, 2011
The quiet desperation of behavioral challenges
One of the reasons I haven't been posting, and may not get this blog off the ground at all, is that I've been working quite a bit on trying to figure out why little one's behavior is so challenging at times, and what to do to support her at those moments. Last school year, both when she was in public school briefly, and when I homeschooled her, I was going down the path of trying to figure out, and then get her diagnosed if necessary, with ADHD. This year my thinking has changed and now I'm researching SPD - Sensory Processing Disorder. The two conditions share some symptoms and manifestations, but they are treated differently. Some day when I have time maybe I'll write more on this, but for now, I'd like to focus on what dealing with either of these potential conditions, in addition to Down syndrome, has done to my daughter, myself and other people in her life. We have good days, great days in fact at times, and then we'll go through a pattern of frustrating, non-compliant, achingly awful days. Those days I struggle with horrible thoughts at times, wondering why I am stuck in this life, why she can't just do better, and how much I want to flee the situation, if even for a little while. The other day, after a rough day at school, with multiple instances of running away from her aid and others, then inability to work at all at Speech therapy, then a breakdown at Yoga class; I just wanted to get out and away. I thought about leaving for a while when my husband got home, but it was pouring rain and I ended up just staying home and dealing with it. It's funny because my husband said, "Why don't you go to (a local restaurant/bar) and have a drink?" I think he was kidding! I haven't even been in a real bar in decades and don't intend to start having a drink for relaxation and falling off the deep end of the slippery slope! I don't think it's wise to "medicate" borderline depression with alcohol, but I know he meant well!
When Marisa was in preschool, a 2 day/week Early Intervention program, she was placed as the only girl in a class with 6 boys, several of whom had some pretty severe "behaviors." I questioned the placement at the time and was told that's all they had to offer. Things were going along okay and then suddenly, towards the end of the school year, her teacher (who had also been her Case Manager since she was 2 months old) informed me that Marisa had been overly aggressive towards several of the kids in the class. She was concerned that Marisa had an underlying behavioral disorder. This came as a complete shock to me because, although she could be somewhat rough at home, and often pushed, pinched, or otherwise got into our personal space, she had never been what I would term overly aggressive. This happened on two days in the classroom. I went in to observe 2 days and during that time Marisa did nothing negative at all towards the other kids. Another ESD employee, a man whose specialty is working with kids with challenging behaviors observed as well and he and I came to the conclusion that the aggressive behavior was just, in his terms, "a blip." After that, though, I severed ties with ESD. I did not want to continue to have her in that classroom. One thing that is very well documented in people with Down syndrome is their great (and sadly often to their detriment) skill at modeling behavior. I know some of the boys in that class had aggressive tendencies, and although I do not judge them, I had to get her out of there. She spent 2 more years in preschool but at a wonderful Montessori, not close to home but well worth the drive. She continued to have behavioral challenges, mostly personal space issues (not so much aggressive tendencies) and non-compliance, but that particular Montessori accepts kids with disabilities and the staff, kids and parent community were truly wonderful. Marisa thrived there overall. Her lead teacher has much experience with ADHD and she agreed with me that we might be adding on that diagnosis.
Cut to what is going on now. Right now I can't even remember who or what clued me in to the possibility that we are dealing with Sensory issues and not ADHD. I'm going to a workshop next month on supporting kids with SPD, and have lots of resources to look through to help determine whether or not it is present. The more I read and hear about it, though, the more it seems to fit, including even the incident in Early Intervention. Kids with SPD tend to be either over-responsive, or under-responsive (Sensory Seeking) to certain sensations. It's not generally black or white with these kids and they may share symptoms of being either under or over-responsive. There is a whole checklist of sensory symptoms and I need to sit down and consider it carefully in terms of how my daughter fits the profile. I checked with a specialist online and asked if a person could have a mild case of SPD because Marisa shows clear signs of some of the symptoms but doesn't fit at all with others. The therapist told me yes, you can have mild SPD and still be affected by it.
I like the saying "Behavior is Communication." I heard if from a wonderful behaviorist, David Pitonyak. He spoke at our local support group's annual inclusion conference a couple of years ago. I agree with him that the way we present ourselves, in good and no so good ways, is a form of communication. I think Marisa is trying to communicate her sensitivity to certain stimuli and am sad that it has taken me so long to realize that! One of the problems with having a diagnosed developmental disability is that there can also be factors in place that go unrecognized. Only fairly recently have doctors and therapists recognized that people with Down syndrome can also be on the Austism Spectrum, or have ADHD. It is known that people with Down syndrome often have sensory issues, but it's hard to figure out to what degree and how best to treat them.
So as I continue on this quest to figure out the best way to support my daughter, I've been having a tough time keeping up with every other matter in an already complicated life. There is still good news in all of this, though. Marisa is often times a funny, sunny, charming, loving and very bright individual. As low as I slide some days when all seems dark, I am comforted by the fact that her behavioral challenges are just one piece of her wonderful persona. She reminds me daily why I will never fail to fight for what she needs. She is worth all the effort.
When Marisa was in preschool, a 2 day/week Early Intervention program, she was placed as the only girl in a class with 6 boys, several of whom had some pretty severe "behaviors." I questioned the placement at the time and was told that's all they had to offer. Things were going along okay and then suddenly, towards the end of the school year, her teacher (who had also been her Case Manager since she was 2 months old) informed me that Marisa had been overly aggressive towards several of the kids in the class. She was concerned that Marisa had an underlying behavioral disorder. This came as a complete shock to me because, although she could be somewhat rough at home, and often pushed, pinched, or otherwise got into our personal space, she had never been what I would term overly aggressive. This happened on two days in the classroom. I went in to observe 2 days and during that time Marisa did nothing negative at all towards the other kids. Another ESD employee, a man whose specialty is working with kids with challenging behaviors observed as well and he and I came to the conclusion that the aggressive behavior was just, in his terms, "a blip." After that, though, I severed ties with ESD. I did not want to continue to have her in that classroom. One thing that is very well documented in people with Down syndrome is their great (and sadly often to their detriment) skill at modeling behavior. I know some of the boys in that class had aggressive tendencies, and although I do not judge them, I had to get her out of there. She spent 2 more years in preschool but at a wonderful Montessori, not close to home but well worth the drive. She continued to have behavioral challenges, mostly personal space issues (not so much aggressive tendencies) and non-compliance, but that particular Montessori accepts kids with disabilities and the staff, kids and parent community were truly wonderful. Marisa thrived there overall. Her lead teacher has much experience with ADHD and she agreed with me that we might be adding on that diagnosis.
Cut to what is going on now. Right now I can't even remember who or what clued me in to the possibility that we are dealing with Sensory issues and not ADHD. I'm going to a workshop next month on supporting kids with SPD, and have lots of resources to look through to help determine whether or not it is present. The more I read and hear about it, though, the more it seems to fit, including even the incident in Early Intervention. Kids with SPD tend to be either over-responsive, or under-responsive (Sensory Seeking) to certain sensations. It's not generally black or white with these kids and they may share symptoms of being either under or over-responsive. There is a whole checklist of sensory symptoms and I need to sit down and consider it carefully in terms of how my daughter fits the profile. I checked with a specialist online and asked if a person could have a mild case of SPD because Marisa shows clear signs of some of the symptoms but doesn't fit at all with others. The therapist told me yes, you can have mild SPD and still be affected by it.
I like the saying "Behavior is Communication." I heard if from a wonderful behaviorist, David Pitonyak. He spoke at our local support group's annual inclusion conference a couple of years ago. I agree with him that the way we present ourselves, in good and no so good ways, is a form of communication. I think Marisa is trying to communicate her sensitivity to certain stimuli and am sad that it has taken me so long to realize that! One of the problems with having a diagnosed developmental disability is that there can also be factors in place that go unrecognized. Only fairly recently have doctors and therapists recognized that people with Down syndrome can also be on the Austism Spectrum, or have ADHD. It is known that people with Down syndrome often have sensory issues, but it's hard to figure out to what degree and how best to treat them.
So as I continue on this quest to figure out the best way to support my daughter, I've been having a tough time keeping up with every other matter in an already complicated life. There is still good news in all of this, though. Marisa is often times a funny, sunny, charming, loving and very bright individual. As low as I slide some days when all seems dark, I am comforted by the fact that her behavioral challenges are just one piece of her wonderful persona. She reminds me daily why I will never fail to fight for what she needs. She is worth all the effort.
Wednesday, January 12, 2011
New Year, new lease on life
Not sure what happened back in October that made me take such a long break, other than the sheer craziness of the succession of fall holidays with added errands to run, parties to go to, shopping to be done, Christmas programs to attend, etc., etc. We had good days and not so good days, but were able to do most of what we had hoped to do, such as attend Christmas Eve Mass as a family finally. Spouse plays guitar sometimes at Mass and he was up front with the other musicians, but Nadia, Marisa, Grandpa (My Dad) and I had good seats, and were able to worship together along with a huge crowd of people we know and people who just showed up for the special occasion. We made it to Marisa's first Christmas Program at her new school and she did a great job. Her aid really showed us what a gift she is with the program. Her kids go to a different school and they had a performance the same night as Marisa's. Her kids also had an afternoon performance, so she arranged to go to that so she could be there to see Marisa perform in the evening. She does things like that and endears herself to me more and more the more I get to know her.
Now that we've recycled the 2010 calendars and hung up the 2011 ones, I look forward to gradually making some positive changes in my life and home environment. I've been steadily sorting, cleaning, donating and generally downsizing the stuff in and around our home. I got through most of the stacks of papers sitting on my dining room table (my home office area) before the holidays and am trying not to let too much accumulate there now. My goal is to have a place for everything and everything in its place early on this year, so I can take a deep breath and enjoy the absence of clutter, in my life and hopefully in my brain as well! I'm trying new recipes and focusing on adding more healthy ingredients to our daily meals. I cooked a big batch of kale for dinner this evening and true to form, big Sis didn't go near it, Spouse just "tried" it, and Marisa said "Yummy!" She is truly my best eater. I loved it too.
I'm also trying to not be so busy all the time this year. I love getting together with my friends but am trying to limit that to just a couple of times a week instead of meeting someone somewhere every single day. Being at home more by myself allows me to work on the multitude of small projects around the house and offers me the time to work on the book I'm writing. I've been enjoying some major down time this week so far, but will probably be feeling antsy by next week and asking for more coffee dates once again.
I've been using a friend's light box to combat my self-diagnosed bout of SAD, and it seems to be working. I've used it for a week now, in the morning while I do computer stuff, and I haven't been quite as tired or felt as overwhelmed lately. That's the good news. The bad news is that if I am convinced it really, truly works, I'll have to spring that budget item on Spouse and listen to his groan. Oh well.
Here's too more good days than bad, and making small adjustments here and there that lead to a happy New Year.
Now that we've recycled the 2010 calendars and hung up the 2011 ones, I look forward to gradually making some positive changes in my life and home environment. I've been steadily sorting, cleaning, donating and generally downsizing the stuff in and around our home. I got through most of the stacks of papers sitting on my dining room table (my home office area) before the holidays and am trying not to let too much accumulate there now. My goal is to have a place for everything and everything in its place early on this year, so I can take a deep breath and enjoy the absence of clutter, in my life and hopefully in my brain as well! I'm trying new recipes and focusing on adding more healthy ingredients to our daily meals. I cooked a big batch of kale for dinner this evening and true to form, big Sis didn't go near it, Spouse just "tried" it, and Marisa said "Yummy!" She is truly my best eater. I loved it too.
I'm also trying to not be so busy all the time this year. I love getting together with my friends but am trying to limit that to just a couple of times a week instead of meeting someone somewhere every single day. Being at home more by myself allows me to work on the multitude of small projects around the house and offers me the time to work on the book I'm writing. I've been enjoying some major down time this week so far, but will probably be feeling antsy by next week and asking for more coffee dates once again.
I've been using a friend's light box to combat my self-diagnosed bout of SAD, and it seems to be working. I've used it for a week now, in the morning while I do computer stuff, and I haven't been quite as tired or felt as overwhelmed lately. That's the good news. The bad news is that if I am convinced it really, truly works, I'll have to spring that budget item on Spouse and listen to his groan. Oh well.
Here's too more good days than bad, and making small adjustments here and there that lead to a happy New Year.
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