I have a terrible flaw. Well, I have many flaws, but one of my worst is that I am constantly making comparisons and, far too often, I allow those comparisons to dominate my thinking. Lately, it has been about the progress Gabriel makes, in school, relationships, life. I see other kids with Down Syndrome making such huge gains, and pass him up in terms of academic skills, and social skills, and it breaks my heart. Then I torture myself near daily with self doubt about whether I am doing right by him. This was going to be a new week for us. I had everything planned to get us back on track after some very difficult months. So, of course, that plan went right out the window first thing this morning. Gabriel got up and went to make his usual breakfast of Life cereal and milk, only to discover we were out of milk. We were out of a lot of things, as it turned out. The important thing is that Gabriel is a boy for whom structure and routine is obsessively important. We simply could NOT get on with our day until he had his cereal and milk, so off to the grocery store we went.
It was good trip, he was extremely helpful in selecting fruits and vegetables and finding the things we need. We were chatting and productive. Then, when we went back to one aisle to grab something I had forgotten, I met a kind lady who, in the course of two minutes altered my entire way of thinking, and shifted me back to the track I should have been on. I think I was on it once, but I had lost my way.
The conversation was short. She said to me "Your daughter is beautiful." I smiled and said "Thank you. His name is Gabriel." She apologized for calling him a girl and I told her it was not a problem, since I was the one who chose to keep his hair long. Then she told me "My daughter was like your son," and as she got tears in her eyes, she added "I miss her so much." Her daughter had lived to the age of 44. We both fought back tears and we hugged. She told me how smart she thought Gabriel was, and how impressed she was with his clear speech. She said her daughter had always had trouble with speech. Her daughter, of course, was born in a different era. In all likelihood, her daughter was hampered more by lack of support and services, than she was by her extra chromosome. None of that really matters, though. All that matter is that she loved her daughter so much, and she didn't have her here anymore. Despite the improved health outcomes for people with Down Syndrome, it is possible, even likely, that I too, will outlive my son. So does it really matter is he is learning as quickly as the others? Does it matter if he faces more challenges? I don't think so anymore. As long as I make sure he knows every day how loved he is. (I am ashamed to admit I have not been good at that over the last couple of months). What matters is that I have him here, with me, NOW.
I wish I had asked her name. I owe her my thanks for reminding me to enjoy him, enjoy our life together, here and now. I needed to stop letting all my anxiety over what-may-be dictate so much of our daily life, and she finally gave me the kick I needed to get my head back on straight. So tomorrow, we have a dentist appointment and school. Whatever school work we get done will be good enough, because we can start again the next day. Together.
Showing posts with label Special Needs. Show all posts
Showing posts with label Special Needs. Show all posts
Monday, April 21, 2014
Monday, November 19, 2012
Angels on Stage
It is difficult to find time to blog on the weekends, so I think I will combine all my weekend gratitude into Monday's posts from now on. Today I want to share with every possible person I can reach, how an organization called Angels on Stage has changed my family.
Angels on Stage is a theatre troupe serving kids with special needs. The kids who perform with AoS run the gamut in terms of challenges. There are kids with neuromuscular disease, kids with Down Syndrome, kids on all areas of the Autism spectrum . . . you name it. I've met parents whose child was afraid to leave the house, but is now learning public speaking and becoming independent. Many of these kids would never have been given a role in a typical theater production. AoS not only gives them the opportunity, it provides the support they need to succeed, and more. They provide buddy coaches, each of whom is a gift to our kids, and the staff is such a unique group of people who have backgrounds in both theater and special education. They create an atmosphere in which all the kids, no matter the challenges, can thrive.
There is a song that they sing at the end of every practice, and also at the end of each show. It starts with just one Angel standing alone singing the words "If just one person believes in you. Deep enough and strong enough believes in you. Hard enough and long enough, it stands to reason that someone else will think 'If he can do it, maybe I can do it" making it two . . ." and then a second angel comes out and they sing the second refrain together . . . and then a third comes out to sing, then fourth. Then they all come out to finish the song "And when all those people believe in you . . . It stands to reason that you yourself will start to see what everybody sees in you. And maybe even you, can believe in you too." (And now I pause because I can't even type the words without crying. Good golly am I hot mess of sentimentality.) This is now our fourth season with AoS and I still cry every single time I hear them sing that. What makes that song so powerful is the fact that it is an absolute truth, and it is personified in this organization.
The people who put AoS together and who work so hard to support and teach and inspire our kids, do absolutely believe. While much of the world looks at kids with special needs through the lens of disability, these people look at our kids through a lens of possibility. They believe with their whole hearts that these kids can do amazing things, and their faith translates into their faith, and they make magic. The truly do.
My own experience with AoS began when Gabriel joined in their second season. It was such a joy to see him up there, dancing and singing as a jungle boy in Jungle Book! I cried through all the performances, not just for my Peanut, but for all those kids. They truly blew me away! They embraced the opportunity with such fervor and such joy. It is a miraculous thing to watch kids who, in every day interactions, may seem inhibited, insecure, (and to some, even incapable) get up on a stage in front of a packed theatre and declare "Here I am! Look what I can do!" The following season they put on an amazing production of Aladdin that, again, just left the audience in awe. That year was also the year my oldest son was dealing with bullying and his self esteem took a horrible beating. It was at our last practice of the season, when all the Angels get to take a turn and go on stage and shine, doing whatever they wanted to share, that the light bulb went off and I realized that I should have had Nick in this all along. I realized I had been doing Nick a great disservice. My view and understanding of his challenges with Asperger's was colored by his brother's Down Syndrome. I failed to see how difficult Asperger's truly can be because it wasn't the same glaringly obvious challenges that come with Down Syndrome. When I finally "got it" and realized how much he could benefit from the safety and acceptance that AoS provided, I asked him if he would like to join, and he was very hesitant. He was afraid and he didn't think he could get on a stage, so I told him "That's the best part of Angels. It is not about the production, it's about YOU. So if you join and come have fun at the practices and at the end of the season, when it is time to perform onstage, if you still don't want to, you don't have to." So he reluctantly agreed.
That next season the play was Alice in Wonderland, all three of my boys were Angels, and Nick asked for a role that had no lines. (He was a Card). We made it through the season and at Tech week (the week leading up to show weekend when we have dress rehearsals every night), as they closed out each rehearsal that week, they asked Nick if he would like to be one of the first 3 kids to step out and sing "Just One Person" and he declined every night. But he told the production manager he would try on show night. Friday night they had the first performance, and they all come out and performed their roles and left us all in tears. Then an Angel came out to start singing Just One Person. Then the second Angel came out. And then Nick. Holding a microphone and singing on stage in front of a packed theatre. I don't think there are words to describe what a huge victory that was for him. I'm quite sure no parent was crying as hard as I was. Now AoS is beginning its fifth season (and our fourth with them), and this year Nick auditioned for and got the speaking role he wanted, and he is showing more confidence and reclaiming his self esteem. Gabriel and Elijah are both also making enormous gains in their confidence and their abilities.
That is what AoS does. They take kids who so many see as "disabled" and from whom many don't expect much, and they believe in them with their whole hearts and they inspire these kids to believe in what they can do, and together, they give these kids wings to fly higher than anyone ever thought possible. I get to spend every Saturday morning surrounded by and working with all of these extraordinary people. I am so deeply grateful to all of them for what they have done for my boys, and I am so glad that I can now be a part of the AoS family by volunteering and helping out during practice. These people have become my family. They have helped to nurture my children, and they have nurtured me. They have made sure I never again feel alone on this journey of "special needs parenting" and for that I can never ever thank them sufficiently.
I am going to end this post with a request, which is not something I would normally do, but this is more than important to me. Please share this. Share it with everyone you know. If someone happens to read this who has the resources to help this organization grow by supporting us financially, or becoming a board member, or in any other way, please consider doing so. The staff and volunteers put their whole hearts into this, they are motivated by pure love for kids who have a rockier path, and they deserve all the support in the world. You can find out more at angelsonstage.org and if you will be in the San Jose area next March, please come see our kids perform. You won't be disappointed. Thank you.
And Thank YOU, Nina, Matt, De, Pam, Judy, Unc,V, Melanie, Sher, and everyone else at AoS. You all are the angels, and I thank God for you every day. You give my children a safe place to be their unique selves and you celebrate them for who they are. That is a gift beyond measure, and all I can say is thank you and I love you.
Angels on Stage is a theatre troupe serving kids with special needs. The kids who perform with AoS run the gamut in terms of challenges. There are kids with neuromuscular disease, kids with Down Syndrome, kids on all areas of the Autism spectrum . . . you name it. I've met parents whose child was afraid to leave the house, but is now learning public speaking and becoming independent. Many of these kids would never have been given a role in a typical theater production. AoS not only gives them the opportunity, it provides the support they need to succeed, and more. They provide buddy coaches, each of whom is a gift to our kids, and the staff is such a unique group of people who have backgrounds in both theater and special education. They create an atmosphere in which all the kids, no matter the challenges, can thrive.
There is a song that they sing at the end of every practice, and also at the end of each show. It starts with just one Angel standing alone singing the words "If just one person believes in you. Deep enough and strong enough believes in you. Hard enough and long enough, it stands to reason that someone else will think 'If he can do it, maybe I can do it" making it two . . ." and then a second angel comes out and they sing the second refrain together . . . and then a third comes out to sing, then fourth. Then they all come out to finish the song "And when all those people believe in you . . . It stands to reason that you yourself will start to see what everybody sees in you. And maybe even you, can believe in you too." (And now I pause because I can't even type the words without crying. Good golly am I hot mess of sentimentality.) This is now our fourth season with AoS and I still cry every single time I hear them sing that. What makes that song so powerful is the fact that it is an absolute truth, and it is personified in this organization.
The people who put AoS together and who work so hard to support and teach and inspire our kids, do absolutely believe. While much of the world looks at kids with special needs through the lens of disability, these people look at our kids through a lens of possibility. They believe with their whole hearts that these kids can do amazing things, and their faith translates into their faith, and they make magic. The truly do.
My own experience with AoS began when Gabriel joined in their second season. It was such a joy to see him up there, dancing and singing as a jungle boy in Jungle Book! I cried through all the performances, not just for my Peanut, but for all those kids. They truly blew me away! They embraced the opportunity with such fervor and such joy. It is a miraculous thing to watch kids who, in every day interactions, may seem inhibited, insecure, (and to some, even incapable) get up on a stage in front of a packed theatre and declare "Here I am! Look what I can do!" The following season they put on an amazing production of Aladdin that, again, just left the audience in awe. That year was also the year my oldest son was dealing with bullying and his self esteem took a horrible beating. It was at our last practice of the season, when all the Angels get to take a turn and go on stage and shine, doing whatever they wanted to share, that the light bulb went off and I realized that I should have had Nick in this all along. I realized I had been doing Nick a great disservice. My view and understanding of his challenges with Asperger's was colored by his brother's Down Syndrome. I failed to see how difficult Asperger's truly can be because it wasn't the same glaringly obvious challenges that come with Down Syndrome. When I finally "got it" and realized how much he could benefit from the safety and acceptance that AoS provided, I asked him if he would like to join, and he was very hesitant. He was afraid and he didn't think he could get on a stage, so I told him "That's the best part of Angels. It is not about the production, it's about YOU. So if you join and come have fun at the practices and at the end of the season, when it is time to perform onstage, if you still don't want to, you don't have to." So he reluctantly agreed.
That next season the play was Alice in Wonderland, all three of my boys were Angels, and Nick asked for a role that had no lines. (He was a Card). We made it through the season and at Tech week (the week leading up to show weekend when we have dress rehearsals every night), as they closed out each rehearsal that week, they asked Nick if he would like to be one of the first 3 kids to step out and sing "Just One Person" and he declined every night. But he told the production manager he would try on show night. Friday night they had the first performance, and they all come out and performed their roles and left us all in tears. Then an Angel came out to start singing Just One Person. Then the second Angel came out. And then Nick. Holding a microphone and singing on stage in front of a packed theatre. I don't think there are words to describe what a huge victory that was for him. I'm quite sure no parent was crying as hard as I was. Now AoS is beginning its fifth season (and our fourth with them), and this year Nick auditioned for and got the speaking role he wanted, and he is showing more confidence and reclaiming his self esteem. Gabriel and Elijah are both also making enormous gains in their confidence and their abilities.
That is what AoS does. They take kids who so many see as "disabled" and from whom many don't expect much, and they believe in them with their whole hearts and they inspire these kids to believe in what they can do, and together, they give these kids wings to fly higher than anyone ever thought possible. I get to spend every Saturday morning surrounded by and working with all of these extraordinary people. I am so deeply grateful to all of them for what they have done for my boys, and I am so glad that I can now be a part of the AoS family by volunteering and helping out during practice. These people have become my family. They have helped to nurture my children, and they have nurtured me. They have made sure I never again feel alone on this journey of "special needs parenting" and for that I can never ever thank them sufficiently.
I am going to end this post with a request, which is not something I would normally do, but this is more than important to me. Please share this. Share it with everyone you know. If someone happens to read this who has the resources to help this organization grow by supporting us financially, or becoming a board member, or in any other way, please consider doing so. The staff and volunteers put their whole hearts into this, they are motivated by pure love for kids who have a rockier path, and they deserve all the support in the world. You can find out more at angelsonstage.org and if you will be in the San Jose area next March, please come see our kids perform. You won't be disappointed. Thank you.
And Thank YOU, Nina, Matt, De, Pam, Judy, Unc,V, Melanie, Sher, and everyone else at AoS. You all are the angels, and I thank God for you every day. You give my children a safe place to be their unique selves and you celebrate them for who they are. That is a gift beyond measure, and all I can say is thank you and I love you.
Monday, April 2, 2012
Autism Awareness Day; Celebrate your child! Or not.
Maybe I am living in a bubble. Maybe I just choose myopia. Maybe I have enough conflict in other areas, that I choose to ignore conflict I don't want to see. I am really very sad and disappointed that, in reading through the myriad posts and links and articles today, I am finding so much conflict and anger and dissention in the Autism community. I hadn't realized there was such a groundswell of opposition to Autism Speaks or that the idea of "celebrating" our kids could be so offensive to some in the Autism community. I know that the roads we walk are not always the same. I know Autism is different from Down Syndrome in that regard, that there is so much greater variance among those born with it. I do know my son was born with it. Maybe I would feel differently if he were on the other end of the spectrum, and not high functioning. Maybe I would be angry, and believe with my whole heart that something was done to him. But that is not my path. My path is what my path is, and I celebrate my son because I love him exactly how he is. I hurt when he hurts and wish he didn't have to struggle, but doesn't every parent experience that to some degree? Does anyone's child, neurotypical or not, have an easy, challenge-free life?
My path includes Autism and Down Syndrome and medical fragility. Vaccines did not cause my son's condition, but what if it had? If I had been told you can vaccinate your son, but he will forever walk this path as a result? What if, knowing that I could save him, I risk the life of my other child? My middle son is a veteran of four different hospitals, his early years defined by medical challenges and immune deficiencies. So maybe I could have saved one son from challenges and heartbreak, but I would have put another son in grave danger at the same time. So, I admittedly have a very hard time empathizing with the more vociferous anti-vaccine voices out there. As alone as the special needs path can sometimes feel, the truth is that we are all interconnected, and a decision like the one to vaccine or not is not made in a vacuum, and it has real word consequences beyond our own bubbles.
Of course, I have a husband who grew up with all the same challenges as my oldest son, but no diagnosis, so when I hear that the rate of Autism is now 1 in 88, my mind doesn't automatically look for a villain in the form of needles. I think that makes sense, because our generation had so many kids go without a diagnosis. They have been there all along. We just didn't see them. Which is why I choose to celebrate, instead of being angry. Because so may people now can look at my boys, all three of my amazing, wonderfully non-typical, special needs boys, and SEE them for who they are. If I could take away one son's Autism, or the other's extra chromosomes, I might make their life easier, but I would lose the very special things I love about them, and they would not be richer for it. So I will celebrate their differences, and I will celebrate their struggles, and I will celebrate the very amazing victories bourne of those struggles. Our path may not be well paved and easy to follow, but it is adorned with amazing grace and beauty, and I wouldn't want to be anywhere else.
My path includes Autism and Down Syndrome and medical fragility. Vaccines did not cause my son's condition, but what if it had? If I had been told you can vaccinate your son, but he will forever walk this path as a result? What if, knowing that I could save him, I risk the life of my other child? My middle son is a veteran of four different hospitals, his early years defined by medical challenges and immune deficiencies. So maybe I could have saved one son from challenges and heartbreak, but I would have put another son in grave danger at the same time. So, I admittedly have a very hard time empathizing with the more vociferous anti-vaccine voices out there. As alone as the special needs path can sometimes feel, the truth is that we are all interconnected, and a decision like the one to vaccine or not is not made in a vacuum, and it has real word consequences beyond our own bubbles.
Of course, I have a husband who grew up with all the same challenges as my oldest son, but no diagnosis, so when I hear that the rate of Autism is now 1 in 88, my mind doesn't automatically look for a villain in the form of needles. I think that makes sense, because our generation had so many kids go without a diagnosis. They have been there all along. We just didn't see them. Which is why I choose to celebrate, instead of being angry. Because so may people now can look at my boys, all three of my amazing, wonderfully non-typical, special needs boys, and SEE them for who they are. If I could take away one son's Autism, or the other's extra chromosomes, I might make their life easier, but I would lose the very special things I love about them, and they would not be richer for it. So I will celebrate their differences, and I will celebrate their struggles, and I will celebrate the very amazing victories bourne of those struggles. Our path may not be well paved and easy to follow, but it is adorned with amazing grace and beauty, and I wouldn't want to be anywhere else.
Monday, February 20, 2012
The great thing about the Pity Party
If you read my last post, I had kind of a crappy day on Friday. I got over it, and we are all in a better place today, and it actually started to get better not long after I wrote that post. I got to spend the evening with some of my favorite moms, who let me know, it wasn't a table for one. Sometimes it may feel that way, but I was reminded that I am never ever alone. It's reassuring to find out there is nothing wrong with me for wanting to cry sometimes, and that there is nothing wrong with me for admitting that this journey is not always sunshine, rainbows and unicorns, and that others read my vents and are grateful to know they too, are not alone.
More importantly though, I reminded that I am so lucky and grateful to be travelling this road. If it weren't for the fact that my children have special needs, I wouldn't have crossed paths, and developed deep friendships with, some of the most wonderful, kind, loving and inspiring people. I simply cannot imagine my life without them. They bring such a depth of joy, and love to this life. So yeah, sometime it sucks, big time. But the upside is that most of the time, I am surrounded and supported by so much love. Not just for me, but for my children. That my boys are loved and cherished by my family and me unconditionally is a given. That they can be cherished and valued by others who truly see them is such a great gift.
Tonight I get to hang out with those same moms, only tonight we get to celebrate our amazing kids, and plan for them, and it will be a happy occasion. And in just a couple of weeks, we are going to sit in a theater, and share tears of pride as our very special kids get on a stage and shine a light that tells the world how special they truly are. No one will be happier or prouder of their kids than we will be that weekend. And that joy is only intensified by our recent moments of "this sucks." It is precisely because it is sometimes so very hard, because we can share that difficulty, that the intensity of joy during the moment of accomplishment are so much deeper.
One of my favorite movies is Parenthood, and one of my favorite scenes is when the Grandmother explains why she prefers the roller coaster to the carousel. "Up, down, up, down. Oh, what a ride! I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited and so thrilled all together! Some didn't like it. They went on the merry-go-round. Nothing. I like the roller coaster. You get more out of it."
I love the roller coaster too. Always have been a roller coaster kind of girl! Maybe there was a reason for that. "Pity Party" days just come with the ride, and my fellow roller coaster enthusiasts get that. I now they, like me, will gladly take the down days because the thrills and unadulterated JOY that come with it are completely worth the bad days. The best thing about the roller coaster is that it is more fun with friends, and I have been blessed with so many wonderful people with whom to share the ride. Today, we are flying high, but when the next drop comes, we will be ready, and we won't be riding alone.
More importantly though, I reminded that I am so lucky and grateful to be travelling this road. If it weren't for the fact that my children have special needs, I wouldn't have crossed paths, and developed deep friendships with, some of the most wonderful, kind, loving and inspiring people. I simply cannot imagine my life without them. They bring such a depth of joy, and love to this life. So yeah, sometime it sucks, big time. But the upside is that most of the time, I am surrounded and supported by so much love. Not just for me, but for my children. That my boys are loved and cherished by my family and me unconditionally is a given. That they can be cherished and valued by others who truly see them is such a great gift.
Tonight I get to hang out with those same moms, only tonight we get to celebrate our amazing kids, and plan for them, and it will be a happy occasion. And in just a couple of weeks, we are going to sit in a theater, and share tears of pride as our very special kids get on a stage and shine a light that tells the world how special they truly are. No one will be happier or prouder of their kids than we will be that weekend. And that joy is only intensified by our recent moments of "this sucks." It is precisely because it is sometimes so very hard, because we can share that difficulty, that the intensity of joy during the moment of accomplishment are so much deeper.
One of my favorite movies is Parenthood, and one of my favorite scenes is when the Grandmother explains why she prefers the roller coaster to the carousel. "Up, down, up, down. Oh, what a ride! I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited and so thrilled all together! Some didn't like it. They went on the merry-go-round. Nothing. I like the roller coaster. You get more out of it."
I love the roller coaster too. Always have been a roller coaster kind of girl! Maybe there was a reason for that. "Pity Party" days just come with the ride, and my fellow roller coaster enthusiasts get that. I now they, like me, will gladly take the down days because the thrills and unadulterated JOY that come with it are completely worth the bad days. The best thing about the roller coaster is that it is more fun with friends, and I have been blessed with so many wonderful people with whom to share the ride. Today, we are flying high, but when the next drop comes, we will be ready, and we won't be riding alone.
Friday, February 17, 2012
Pity Party, Table for One
Got the notification for Elijah's IEP meeting. I noticed, among the usual attendees, the speech therapist was added. Elijah originally qualified for SpEd because of speech, so it's not a shock to see her there, but he had not needed speech services this year. He had continued in SpEd because other learning issues had presented themselves. It seems now that speech is once again an issue. No big deal really. His speech is clear enough that anyone can understand him, but her name on the notice compelled me to have a quick conversation with his teacher after school today. That conversation only solidified something I've known for awhile, yet suddenly is more than I want to handle at the moment. Elijah isn't just a bit behind. His challenges aren't going to right themselves with just a bit more time. Something in his brain isn't wired the way a typical learner's brain is wired, and we can't just "re-wire' him.
I KNOW this is small potatoes. I KNOW how lucky I am that he is healthy, and active and I KNOW how blessed we are. I AM so grateful for him, and I DON'T want to change anything about him, or his brothers. Well, ok, I admit it would be nice if his sound system had a setting other than loud and "omigosh, the neighbors are going to think I'm abusing him" - but other than that, I don't want to change anything about any of my kids. I just wish that one of them didn't have to look forward to a path filled with challenges. I wish just one of my kids could have a typical learning experience. I wish things didn't have to be so much harder for them.
I know I need to get over myself, quit whining and put on my big girl panties and all that. Yada yada yada. I will. Later today, with a nice bottle of wine and my fellow Special Needs Moms. But for now, I just don't have the energy or the inclination to find the silver lining, or bask in the joy of life lessons, and pretend that life is always all rainbows and unicorns. Sometimes, being the mom of three kids with special needs just plain sucks. Today is one of those days. Tomorrow will be better. Tomorrow I get to spend the day with 100 other parents walking my same journey and I will find strength in our shared challenges. But for today, I just need to vent. And have a glass of wine.
I KNOW this is small potatoes. I KNOW how lucky I am that he is healthy, and active and I KNOW how blessed we are. I AM so grateful for him, and I DON'T want to change anything about him, or his brothers. Well, ok, I admit it would be nice if his sound system had a setting other than loud and "omigosh, the neighbors are going to think I'm abusing him" - but other than that, I don't want to change anything about any of my kids. I just wish that one of them didn't have to look forward to a path filled with challenges. I wish just one of my kids could have a typical learning experience. I wish things didn't have to be so much harder for them.
I know I need to get over myself, quit whining and put on my big girl panties and all that. Yada yada yada. I will. Later today, with a nice bottle of wine and my fellow Special Needs Moms. But for now, I just don't have the energy or the inclination to find the silver lining, or bask in the joy of life lessons, and pretend that life is always all rainbows and unicorns. Sometimes, being the mom of three kids with special needs just plain sucks. Today is one of those days. Tomorrow will be better. Tomorrow I get to spend the day with 100 other parents walking my same journey and I will find strength in our shared challenges. But for today, I just need to vent. And have a glass of wine.
Monday, January 9, 2012
Heartbroken
Today is Elijah's birthday, and he is turning 6! I am so happy for my little boy who is growing up so fast. He is such a sweet little man. We had a little celebration for him at school, then I came home, where Gabriel and I baked a cake that is now in the oven. Presents are wrapped and we are going to have a great day.
But I have been fighting tears all morning. Actually got to cry on Hunny's shoulder a bit, but apparently not enough, because tears are flowing again as I write this. Why, one may ask, would a mom be sad on the occasion of her son's birthday? Well, yesterday at his birthday party, (an event for which I'll post pics later!), I was confronted with a reality I have always known was coming, and was nonetheless utterly unprepared for. While confirming an upcoming playdate, one of Elijah's friends rejected his brother. He very clearly expressed his desire that Gabe not be included. He didn't do it maliciously, he wasn't trying to be mean, and if Gabe had heard, he wouldn't have realized it. But I did. And it hurts. Enough that I'm crying the day after.
One of the hardest parts of choosing to homeschool, and sticking with it, is knowing that he doesn't get the daily bonding and friendship-building that comes with traditional school. Yeah, we have him involved in other activities so he gets socialization. But it's not the same as going to school everyday and seeing the same friends everyday. I guess I was secretly hoping that as Elijah started school, and his classmates were exposed to Gabriel, that, somehow, they would become Gabriel's friends, too. Maybe they will. But the sting of that first real rejection really stings. And I'm left questioning the wisdom of my choices. Is the academic advantages of homeschooling worth the cost of relationships? I'm not so sure today. I look into his beautiful face and wonder "What is the right thing to do?"
He just finished his writing assignment, and crawled onto my lap and is cuddling me as I type. God I love this boy! I guess he is telling me it's ok. Really, how can I look into this face and not know everything is going to be ok:
So, I'll leave this here and go take the cake out of the oven and celebrate my youngest, and save the tears for the next time.
And to those who would say I'm whining about my choices, all I can say "eff you." Sometimes having kids with special needs is extremely hard, and sometimes it hurts deeply. It's okay for me to say so. If you don't get that, then the problem is with you.
But I have been fighting tears all morning. Actually got to cry on Hunny's shoulder a bit, but apparently not enough, because tears are flowing again as I write this. Why, one may ask, would a mom be sad on the occasion of her son's birthday? Well, yesterday at his birthday party, (an event for which I'll post pics later!), I was confronted with a reality I have always known was coming, and was nonetheless utterly unprepared for. While confirming an upcoming playdate, one of Elijah's friends rejected his brother. He very clearly expressed his desire that Gabe not be included. He didn't do it maliciously, he wasn't trying to be mean, and if Gabe had heard, he wouldn't have realized it. But I did. And it hurts. Enough that I'm crying the day after.
One of the hardest parts of choosing to homeschool, and sticking with it, is knowing that he doesn't get the daily bonding and friendship-building that comes with traditional school. Yeah, we have him involved in other activities so he gets socialization. But it's not the same as going to school everyday and seeing the same friends everyday. I guess I was secretly hoping that as Elijah started school, and his classmates were exposed to Gabriel, that, somehow, they would become Gabriel's friends, too. Maybe they will. But the sting of that first real rejection really stings. And I'm left questioning the wisdom of my choices. Is the academic advantages of homeschooling worth the cost of relationships? I'm not so sure today. I look into his beautiful face and wonder "What is the right thing to do?"
He just finished his writing assignment, and crawled onto my lap and is cuddling me as I type. God I love this boy! I guess he is telling me it's ok. Really, how can I look into this face and not know everything is going to be ok:
So, I'll leave this here and go take the cake out of the oven and celebrate my youngest, and save the tears for the next time.
And to those who would say I'm whining about my choices, all I can say "eff you." Sometimes having kids with special needs is extremely hard, and sometimes it hurts deeply. It's okay for me to say so. If you don't get that, then the problem is with you.
Thursday, April 21, 2011
I'm Still Working On It
This week, we finally signed the IEP for Nicholas. It's official. I have three kids in Special Ed. For anyone reading this who hasn't heard the term IEP, it stand for Individualized Education Plan, and every child in SpEd has one. It lays out the qualifications, and goals for the child for the year. Ever year, we meet, go over the progress, and rewrite the goals.
The decision of the IEP team, in Nick's case, is to send him to a different school in the district for 5th grade, so that he can participate in a program for kids with high functioning Autism and Aspergers. It is a Special Day class, he will not be mainstreamed. The program is wonderful and I know he is going to thrive there. I am even hopeful he will make some real friends. On the whole, this is a good thing. Yet, when I went to sign the paperwork, I just wanted to cry.
I'm not even sure why. We are so blessed. I have more than one friend whose children have had to fight just to live. My friends deal with brain tumors, and leukemia, and liver cancer. My kids have it so easy in comparison. But I still want to cry, and I feel guilty for feeling that way.
I know in my head how lucky we are. I know in my head that while it won't necessarily be easy, they will be okay and happy. My heart just hasn't quite got the message yet. It still feels the sting of seeing my son in tears after being teased and bullied. It feels the sting of judgment and assumption that comes when others look at my kids and don't see them for who they are. It feels the sting when I can see in people's eyes that they see labels and stereotypes instead of people: "Down Syndrome" Autistic" "weirdo" . . . the r-word.
I am grateful. I am, truly, grateful that my children are healthy, and don't have to fight the battles other children do. But in my heart, that's not enough. I want them to be seen for who they are, accepted as is, included and valued for their unique gifts. It's not too much to ask is it?
Or maybe, I just need to focus less on what the world thinks, and spend more energy on being grateful for the privilege of being their mom, and for their health and all the love and support that surround us. Maybe I just need to get over myself and my hangups. I'm trying.
I hope my stronger friends, whose children have real fights to fight, will forgive me, and be patient with me. I look up to you, and want to be more like you.
I'm still a work in progress.
Wednesday, March 30, 2011
See Me
SEE me.
I am creative.
I am funny.
I am affectionate.
I am curious.
I am capable.
I am smart.
I am artistic.
I am fun.
I am kind.
I am silly.
I am serious.
I am thoughtful.
I am aware.
SEE me.
I am a learner.
I am a dancer.
I am a gymnast.
I am a musician.
I am an athlete.
I am a story teller.
I am an artist.
I am a scientist.
I am a singer.
I am an actor.
I am a writer.
I am a boy.
I am a son.
I am a brother.
I am a friend.
SEE me.
I am not Down Syndrome.
I am not Autism.
I am not retarded.
I am not weird.
I am not limited.
I am not disabled.
I am not what you think.
See ME.
I am worthy.
I am full of wondrous possibilities.
I am amazing.
See. Me.
Wednesday, February 3, 2010
Sarah Palin Sure Loves to Talk
Her latest diatribe is against Rahm Emanuel, for his ignorant use of the R-word. Let's be clear, Rahm Emanuel is an ass. I hope he gets fired. He deserves every ounce of criticism he gets.
But not from Sarah Palin. Sarah Palin is the biggest of hypocrites, and her feigned outrage is completely hollow. She will jump on the bandwagon to criticize someone for the use of a word, and she'll trot her poor son Trig out, when it suits her, to promote her own self. But what, exactly has she done for the DS community, other than give birth to another member? Nothing.
Has she sponsored or fought for any legislation? No. Although, I guess that's hard to do when you quit your job halfway through. Has she fought to increase funding for research or programs? No. Has she participated in any of the nationwide Buddy Walks to raise awareness? No. Has she come to any conferences and given a speech? No. I was at the last NDSC Conference, and she was nowhere to be seen. One would think, given her state of voluntary unemployment, she might have the time to squeeze in an appearance or two to help promote awareness, research and programs. She seems to have enough time to speak to foreign audiences about what she perceives as failures in this President, and she seems to have enough time to speak at "Tea Parties." She has enough time to pontificate on the evils of providing healthcare to everyone, conveniently using Trig as a tool to manipulate opinion. Heck, she's been able to squeeze in writing a book (I use the term "writing" loosely) and promote it at book signings all over the country.
Here's a novel idea Ms.Palin. You want those of us in the DS community to take you seriously, perhaps you should consider engaging, instead of using your son's diagnosis as a convenient prop in your endless quest of self-promotion. You're mighty good at talking the talk. Why don't you wipe off some of that lipstick and walk the walk. I, for one, am not holding my breath. Given that you willingly put his life at risk to go make a speech, I personally don't think you hold your son in as high regard as the rest of us. It's a damn shame, really. Trig has such great potential, if he only had a mother who was interested in being his advocate, even when it's not to her benefit.
But not from Sarah Palin. Sarah Palin is the biggest of hypocrites, and her feigned outrage is completely hollow. She will jump on the bandwagon to criticize someone for the use of a word, and she'll trot her poor son Trig out, when it suits her, to promote her own self. But what, exactly has she done for the DS community, other than give birth to another member? Nothing.
Has she sponsored or fought for any legislation? No. Although, I guess that's hard to do when you quit your job halfway through. Has she fought to increase funding for research or programs? No. Has she participated in any of the nationwide Buddy Walks to raise awareness? No. Has she come to any conferences and given a speech? No. I was at the last NDSC Conference, and she was nowhere to be seen. One would think, given her state of voluntary unemployment, she might have the time to squeeze in an appearance or two to help promote awareness, research and programs. She seems to have enough time to speak to foreign audiences about what she perceives as failures in this President, and she seems to have enough time to speak at "Tea Parties." She has enough time to pontificate on the evils of providing healthcare to everyone, conveniently using Trig as a tool to manipulate opinion. Heck, she's been able to squeeze in writing a book (I use the term "writing" loosely) and promote it at book signings all over the country.
Here's a novel idea Ms.Palin. You want those of us in the DS community to take you seriously, perhaps you should consider engaging, instead of using your son's diagnosis as a convenient prop in your endless quest of self-promotion. You're mighty good at talking the talk. Why don't you wipe off some of that lipstick and walk the walk. I, for one, am not holding my breath. Given that you willingly put his life at risk to go make a speech, I personally don't think you hold your son in as high regard as the rest of us. It's a damn shame, really. Trig has such great potential, if he only had a mother who was interested in being his advocate, even when it's not to her benefit.
Wednesday, August 26, 2009
Random Tales From the Motherhood Trail
So I'm trying to potty train Elijah and Gabe at the same time. Oh joy. I have to tip my hat to you moms of twins and triplets or more. On the first really serious keep-them-at-home-and-naked-and-make-them-drink-too-much-water day of our adventure, I started with the method that had worked so magically with Nicholas. Potty presents!!! They each had their own basket full of goodies haphazardly wrapped in brightly colored tissue, and told them they could have one each time they went on the potty. As it turns out, this is the same day they both suddenly developed bladders of steel. I made them start drinking water, and kept them drinking, but when we went to sit . . . nada. I basically spent the first, oh, three hours of my day going up and down the hall putting kids on the potty every 10 minutes, and I have to tell ya, it's wayyy more exhausting than it sounds. Eventually, we went in, Elijah sat down first and "Hallelujah!" there was pee!!! Never thought I'd ever get that excited about a bodily fluid. So, after much excitement and celebratory high fives, Elijah gets down and Gabey gets on, and . . . nothing. Elijah, being the helper that he is (I'll have to have a whole separate post about this new phase), he says to his brother, "Gabey, you got to pwess you bewwy button! Dat make it go!" Alas, Gabey's button wasn't registering quite yet. He did get his first success shortly thereafter, and had only one accident that day. I ended the day very excited at the prospect of moving out of diapers. The next day I got them their first new underwear, which was a fun diversion for all of a day. Turns out I have to check the enthusiasm a bit.
It's been fun watching how Elijah's brain works. Whereas Nick, at the same stage thought "Cool, I get presents for going potty. I can do that." Elijah thought "JACKPOT!" He very quickly turned the training into a tool for aquiring new things. He would ask for a present for the slightest amount of production. He'd go for about a second and a half, and then give me this wide-eyed look and say "It stopped. Now I got to get a potty pwesent!" Then he'd go right back to the potty, and if it didn't happen, he'd say "I think I need some wa-ter" and go drink some more. I ran out of potty presents that day. I made an emergency shopping trip that night while they were in bed and bought every cheap toy from ever dollar store bin in the area. Nick's rewards lasted much longer, but he isn't the manipulator Elijah is turning out to be. Eventually we had to turn to M-n-Ms (thank you Godmommy!) They are cheaper and last longer, but Elijah is still doing his best to finagle as many M-n-Ms has he can. Gabe, on the other hand has pretty much decided it was fun for awhile , but now he's over it and may I have my diaper back please? ~~sigh~~
School started and Gabe still has to wear the diapers to school because he has no bowel control, but I sent the M-n-Ms and they will work with him there, and when he gets home, I make him run around sans britches. He will get there. It's just going to take a while longer. Elijah is basically there, he just needs to work on the bowel control. He has the pee mastered, but he's still working the M-n-Ms to the best of his ability. He also started saying, when he sits down and nothing happens immediately, "Just give it few seconds." Gee, I wonder where he learned that?
When they are both finally done, and I can cross diapers off my to do list forever, I am throwing one big party. Who wants to come?
It's been fun watching how Elijah's brain works. Whereas Nick, at the same stage thought "Cool, I get presents for going potty. I can do that." Elijah thought "JACKPOT!" He very quickly turned the training into a tool for aquiring new things. He would ask for a present for the slightest amount of production. He'd go for about a second and a half, and then give me this wide-eyed look and say "It stopped. Now I got to get a potty pwesent!" Then he'd go right back to the potty, and if it didn't happen, he'd say "I think I need some wa-ter" and go drink some more. I ran out of potty presents that day. I made an emergency shopping trip that night while they were in bed and bought every cheap toy from ever dollar store bin in the area. Nick's rewards lasted much longer, but he isn't the manipulator Elijah is turning out to be. Eventually we had to turn to M-n-Ms (thank you Godmommy!) They are cheaper and last longer, but Elijah is still doing his best to finagle as many M-n-Ms has he can. Gabe, on the other hand has pretty much decided it was fun for awhile , but now he's over it and may I have my diaper back please? ~~sigh~~
School started and Gabe still has to wear the diapers to school because he has no bowel control, but I sent the M-n-Ms and they will work with him there, and when he gets home, I make him run around sans britches. He will get there. It's just going to take a while longer. Elijah is basically there, he just needs to work on the bowel control. He has the pee mastered, but he's still working the M-n-Ms to the best of his ability. He also started saying, when he sits down and nothing happens immediately, "Just give it few seconds." Gee, I wonder where he learned that?
When they are both finally done, and I can cross diapers off my to do list forever, I am throwing one big party. Who wants to come?
Wednesday, August 19, 2009
Seven Years Ago Today
After months alternating between fear and anticipation, and 15 hours of labor, I met my miracle. He was born at 9:05 am, and weighed exactly seven pounds. Although he made it to 38 weeks and was a healthy weight, he still was whisked away from me before I could hold him. For seven hours, I had no idea what was happening with my baby boy. I was taken to my room, and my only distraction was news coverage of a massive fire that had broken out at the newly built Santana Row shopping complex. And a nurse aptly named Charity. Charity came and sat on my bed and wrapped her arms around me and just let me sob. She stayed with me for quite awhile, and came back often. She got me through the longest seven hours of my life. Finally, at 4:00 in the afternoon, I was able to go to the NICU and see my beautiful Gabriel George. His heart wasn't working properly and he couldn't keep his oxygen levels up. Over the next ten days, we met with cardiologists, and Gabe and I worked very very hard to establish nursing. Not easy when your baby is too tired to wake up and has the muscle tone of a rag doll, which is exactly how he felt when we held him. After ten days, we were allowed to take him home, along with several boxes of oxygen and extra cannulas. Seven months later he had surgery to repair his heart.
And now, seven years later, he is the most amazing little human I have ever known. He loves music and dance. He loves his brothers, and has a particularly tight bond with his baby brother. If I dare show up to pick him up from school without Elijah, the first words out of his mouth are "Mommy? Where zha-zha?" He has no shortage of self esteem. He is quite in love with himself, really. He will dance in front of the turned off TV and watch himself in the reflection all day long if I let him. This June he performed in his seventh recital.
He loves going to school, and is on the cusp of reading.
There really aren't words sufficient to describe the love we share. He is an amazing miracle and I am so grateful he is mine.
I am, without a doubt, the luckiest mom in the whole world.
And now, seven years later, he is the most amazing little human I have ever known. He loves music and dance. He loves his brothers, and has a particularly tight bond with his baby brother. If I dare show up to pick him up from school without Elijah, the first words out of his mouth are "Mommy? Where zha-zha?" He has no shortage of self esteem. He is quite in love with himself, really. He will dance in front of the turned off TV and watch himself in the reflection all day long if I let him. This June he performed in his seventh recital.
He loves going to school, and is on the cusp of reading.
There really aren't words sufficient to describe the love we share. He is an amazing miracle and I am so grateful he is mine.
I am, without a doubt, the luckiest mom in the whole world.
Wednesday, January 7, 2009
Better Late Than Never: Buddy Walk '08!
I promised to put up pictures from the Buddy Walk 3 months ago, but my camera got dropped and met its maker, somehow in the process corrupting a file on the card, so we couldn't download them. No reader could find the pics. My awesome super genius hunny figured out a way to get them onto his work computer, so now we finally have them YAYYY! To recap - this year's Buddy Walk was a success in terms of turnout, despite the downpours of rain - which I actually quite enjoyed, as opposed to the heat of years past. Fundraising was down, but that was to be expected. The best part was having Sharkie , the San Jose Sharks mascot there! Gabriel and Nicholas even made it onto the local news!!! (Not sure if the link is still good, but if it is, you can see the segment here. Gabriel and Robert are at 1:42, and Nick is at 2:20 into the video.)Sharkie helped our team lead off the walk, and both Nick and Gabe loved him! Elijah was a bit timid, what with him being terrified of his own shadow and all. So, I'll stop blathering now, as I know all you really care about are the pictures. Enjoy!
Here is Gabriel with Sharkie:
Getting ready to start the walk, with storm clouds looming in the not-so-distant distance:
The Firefighters came and brought an engine for the kids to explore. The kids loved this more than the bounce houses!
He make look like he's all cuteness and light, but behind the precocious smile lies the heart of a true troublemaker. I can't fathom where he gets it!
My Sweet Peanut. Dontcha just want to eat him up? This kid melts my heart daily.
This is my amazing wonder woman friend, Marcie, and her beautiful daughter Maddie. We're hoping to be related by marriage someday. =)
Friday, June 27, 2008
So cute, your heart will explode!
Yeah, yeah - I know. All moms think their kid is The. Cutest. But none of them have my Peanut to show! Today was the dress rehearsal for his recital tomorrow, and I have to say, he and his girlfriend ROCKED THE HOUSE! And the pictures they let me take after - Ooohhhh, melt me like buttah!!!! Don't say I didn't warn you.
Sunday, June 1, 2008
How Education is Failing our Kids
We now know more about what happened in the classroom of Alex, the Kindergarten student who was voted out of class (see my post below). Having a better understanding of the thought process the teacher went through, I still support her removal from the classroom, and I think her return should be contingent upon receiving some training in dealing with children with special needs, but I no longer feel as outraged as I did. The incident that happened in Florida is indicative of a much bigger problem within our school system.
Anyone who knows me can tell you there isn't a bigger or louder cheerleader for public schools. I am the public schools. I am a first grade teacher at heart. It is my passion. It was my career before children and I had never intended to take a break from doing what I loved, but I was forced to put my career on hold by the demands of having a child with Down syndrome. This year I returned to teaching part time by working as a sub. As much as I would love to work full time, it's just not an option yet, so working as a substitute is the compromise. When I pull together my experiences as a substitute teacher and combine them with my experiences as a special needs mother, I can see a clear picture of one of the biggest challenges facing our teachers, and one of the principle failings of our system. Five year old Alex wasn't a victim of a mean-hearted teacher. He was a victim of a system that has failed to prepare that teacher to meet his needs.
Let me say, the vast majority of teachers I have had the pleasure of working with, are incredibly talented, hard-working, passionate people. Teachers do the hardest work, and bear the brunt of criticism for failures that are not theirs. This is not a criticism of the teachers in our system. It is a criticism of a system that fails to give them the tools and training they need to meet the needs of children who are not neurotypical. One might counter that with "That's why we have Special Education teachers" and that, to an extent, is true. But the shortage of skilled SpEd teachers practically guarantees that no teacher with a SpEd credential will teach in a mainstream classroom. Teachers who have gone though the extra training to earn Master's degrees in SpEd will almost always end up teaching Special Day Class, rather than a mainstream class with special needs kids fully included. For the children, like my son Gabriel, who are placed in a SDC with a trained teacher, this is exactly what they need. I have no concerns at all about my son's education because he has a highly trained and very experienced teacher. He understands my son's unique learning needs, his unique behavior patterns, his triggers and his motivators, he knows how to individualize my son's education, and how to manage the individualized plans of all his very diverse group of students. My son is in extremely good hands.
So where does that leave the students who have special needs but are not in a classroom with a SpEd teacher? That depends. There are mainstream teachers who have the right personality and teaching style to adapt to a wider array of learning needs, and there are mainstream teachers who, of their own accord, have sought out learning opportunities to better understand children with special needs. But training in addressing special needs, and managing IEPs (Individualized Education Plans - all SpEd students have one) is not mandatory beyond the cursory one semester course of the credentials process. So chances are, if you have a child with Asperger's like Alex or Nick, or a child with ADHD, or any one of a number of special needs, at one point or another you will be faced with a teacher who, though skilled and successful at teaching neurotypical kids, is not a good fit for your child. An unfortunate consequence to that is that the rest of the students also suffer when a mainstream educator is asked to make special accommodations they are not trained to make.
So what can be done? It isn't reasonable to expect that all teachers should go out and get degrees in SpEd, but they should have access to some training. What I would like to see is the creation of a special education liaison/advocate to work with and train teachers as they need it. It would be the job of the liaison to manage the IEPs of kids in mainstream classrooms, and provide training and support for the teachers. Students are typically assigned their classrooms at the end of the previous year. The advocate, at the start of the new year, would meet with the teachers who will be receiving students with IEPs, and provide some "basic" training; what behaviors they are likely to see, what kind of classroom set up will best support that students' needs, what kind of discipline works and what doesn't, what kind of coping mechanisms will help the student stay on task, what kind of teaching style does the student best respond to, and what does not. For Nicholas, his teachers need to know he is easily overstimulated by sights and sounds, so the classroom should be neat and not over-decorated. He should be seated near the front and desks should be facing forward. Nick requires routine and structure, so he needs to be warned in advance of any change in schedule, and subs should be given information to help him adjust to a change in teacher. For children with ADHD, or Sensory Integration Disorder, the needs are different. A liaison would be able to support the teachers and give them the information and tools they need to meet all the different needs. Once the school year is under way, the liaison would be responsible for monitoring the progress, by observing the classrooms, and meeting regularly with the teachers to find out what they need, and meeting with the students and parents to find out what they need, and working with the teacher and the family to make sure the learning environment supports them all.
Perhaps, the next generation of educational reforms will pull back the focus on testing and start putting the focus where it needs to be: supporting the interaction between students and teacher, and providing the tools necessary to make that interaction the best it can be every single day. One can hope.
Tangential to the topic, I hope more parents will start to see the Special Education classes for what they are - a service provided by highly qualified, specially trained professionals who are passionate and hard-working and have our children's best interests at heart. I have always had a difficult time hearing from parents within the Down syndrome community who fight for full mainstreaming of their very special needs child and then scream and shout because of all the difficulties with the teacher - the teacher who does not have the training or background to meet those special needs. The problem isn't with the teachers. It is with the misplaced expectation and the misunderstanding of what SpEd is for.
I've got my flamesuit on and I fully expect to catch hell for that view, but there it is.
Anyone who knows me can tell you there isn't a bigger or louder cheerleader for public schools. I am the public schools. I am a first grade teacher at heart. It is my passion. It was my career before children and I had never intended to take a break from doing what I loved, but I was forced to put my career on hold by the demands of having a child with Down syndrome. This year I returned to teaching part time by working as a sub. As much as I would love to work full time, it's just not an option yet, so working as a substitute is the compromise. When I pull together my experiences as a substitute teacher and combine them with my experiences as a special needs mother, I can see a clear picture of one of the biggest challenges facing our teachers, and one of the principle failings of our system. Five year old Alex wasn't a victim of a mean-hearted teacher. He was a victim of a system that has failed to prepare that teacher to meet his needs.
Let me say, the vast majority of teachers I have had the pleasure of working with, are incredibly talented, hard-working, passionate people. Teachers do the hardest work, and bear the brunt of criticism for failures that are not theirs. This is not a criticism of the teachers in our system. It is a criticism of a system that fails to give them the tools and training they need to meet the needs of children who are not neurotypical. One might counter that with "That's why we have Special Education teachers" and that, to an extent, is true. But the shortage of skilled SpEd teachers practically guarantees that no teacher with a SpEd credential will teach in a mainstream classroom. Teachers who have gone though the extra training to earn Master's degrees in SpEd will almost always end up teaching Special Day Class, rather than a mainstream class with special needs kids fully included. For the children, like my son Gabriel, who are placed in a SDC with a trained teacher, this is exactly what they need. I have no concerns at all about my son's education because he has a highly trained and very experienced teacher. He understands my son's unique learning needs, his unique behavior patterns, his triggers and his motivators, he knows how to individualize my son's education, and how to manage the individualized plans of all his very diverse group of students. My son is in extremely good hands.
So where does that leave the students who have special needs but are not in a classroom with a SpEd teacher? That depends. There are mainstream teachers who have the right personality and teaching style to adapt to a wider array of learning needs, and there are mainstream teachers who, of their own accord, have sought out learning opportunities to better understand children with special needs. But training in addressing special needs, and managing IEPs (Individualized Education Plans - all SpEd students have one) is not mandatory beyond the cursory one semester course of the credentials process. So chances are, if you have a child with Asperger's like Alex or Nick, or a child with ADHD, or any one of a number of special needs, at one point or another you will be faced with a teacher who, though skilled and successful at teaching neurotypical kids, is not a good fit for your child. An unfortunate consequence to that is that the rest of the students also suffer when a mainstream educator is asked to make special accommodations they are not trained to make.
So what can be done? It isn't reasonable to expect that all teachers should go out and get degrees in SpEd, but they should have access to some training. What I would like to see is the creation of a special education liaison/advocate to work with and train teachers as they need it. It would be the job of the liaison to manage the IEPs of kids in mainstream classrooms, and provide training and support for the teachers. Students are typically assigned their classrooms at the end of the previous year. The advocate, at the start of the new year, would meet with the teachers who will be receiving students with IEPs, and provide some "basic" training; what behaviors they are likely to see, what kind of classroom set up will best support that students' needs, what kind of discipline works and what doesn't, what kind of coping mechanisms will help the student stay on task, what kind of teaching style does the student best respond to, and what does not. For Nicholas, his teachers need to know he is easily overstimulated by sights and sounds, so the classroom should be neat and not over-decorated. He should be seated near the front and desks should be facing forward. Nick requires routine and structure, so he needs to be warned in advance of any change in schedule, and subs should be given information to help him adjust to a change in teacher. For children with ADHD, or Sensory Integration Disorder, the needs are different. A liaison would be able to support the teachers and give them the information and tools they need to meet all the different needs. Once the school year is under way, the liaison would be responsible for monitoring the progress, by observing the classrooms, and meeting regularly with the teachers to find out what they need, and meeting with the students and parents to find out what they need, and working with the teacher and the family to make sure the learning environment supports them all.
Perhaps, the next generation of educational reforms will pull back the focus on testing and start putting the focus where it needs to be: supporting the interaction between students and teacher, and providing the tools necessary to make that interaction the best it can be every single day. One can hope.
Tangential to the topic, I hope more parents will start to see the Special Education classes for what they are - a service provided by highly qualified, specially trained professionals who are passionate and hard-working and have our children's best interests at heart. I have always had a difficult time hearing from parents within the Down syndrome community who fight for full mainstreaming of their very special needs child and then scream and shout because of all the difficulties with the teacher - the teacher who does not have the training or background to meet those special needs. The problem isn't with the teachers. It is with the misplaced expectation and the misunderstanding of what SpEd is for.
I've got my flamesuit on and I fully expect to catch hell for that view, but there it is.
Wednesday, May 28, 2008
Heartbreaking
In an elementary school in Florida last week, the unthinkable happened. A five year old boy was humiliated and demeaned in front of his class . . . by his teacher. The little boy's name is Alex, and Alex is currently being evaluated for Asperger's, an Autism Spectrum Disorder. His teacher decided the best way to deal with Alex's behavior challenges was to make him stand in front of his classmates, then call on each one in turn to tell Alex what they disliked about him, and in the end called a class vote to remove him from class. Fourteen of his classmates voted him out. Two children voted to let him stay. He was then sent to the nurse's office until his mother came to get him.
This story at once deeply saddens me and infuriates me. I am both a teacher and a mother, and I cannot comprehend what thought process led to this woman thinking that this was in any way an acceptable way to deal with children, much less a child who has special needs. How did she not see the damage she was inflicting, not only on Alex, but on the entire class? What lesson did she teach these children about how we treat each other as human beings? What lesson did she teach them about understanding those who are different than we are? Instead of teaching them about patience and compassion, she taught them that it is okay to ridicule and demean. Instead of teaching them acceptance, she taught them to exclude and ostracize. What a terrible legacy to leave her students.
And what about Alex. I cried when I read this because it does hit so close to home. People who know little about Asperger's will often look at a child and see someone who is bothersome or annoying. I know my son wants more than anything just to have friends. He longs to fit in and be accepted, but it is a growing challenge for him to connect to other kids in meaningful ways, though he tries very hard to do just that. Children with Asperger's lack the kind of social cues that come naturally to the rest of us, such as the ability to read facial expression or body language. They don't perceive subtleties in tone. They don't get sarcasm. Children with Aspergers thrive on structure and routine and often have difficulties coping with changes to routine. Alex and his family had only moved to the area this January, a huge change that can be very difficult for children like Alex.
Children with Aspergers often have an intense interest in a very narrow range of subjects, and have uncommon knowledge about their preferred subjects. This can cause difficulties on the playground or in group settings when the child literally cannot switch tracks to engage in another type of play, and cannot understand why others don't want to play the same way s/he does. The child will often talk a lot about the favorite subject, with one-sided conversations being common. They don't know how to give and take in conversation. For Nick, when he gets started talking about pirates he simply cannot turn it off until every last thought is out of his head and verbalized. This can take a long time! In a social situation, this can create barriers to forming friendships.
Children with Asperger's very often also have symptoms of sensory integration disfunction. They have heightened sensitivity and can easily become overstimulated by loud noises, bright lights, or textures. When Nick is overwhelmed by his environment, it affects his ability to focus and follow along. I imagine much of little Alex's behavior problems can be attributed to this.
Reading stories like Alex's makes me anxious for Nick. Thus far, we have been blessed with truly remarkable teachers who see Nick for who he is and know how to support him and guide him. But I fear that will not always be the case. It is going to be challenging enough for him to navigate the often treacherous waters of social interaction with his peers, without having to worry that a teacher might someday also be one of his tormentors.
Little Alex should never have been treated that way, no matter what behavior challenges he presented. Nor should his peers have been taught that it is okay to treat others in this fashion. I can only hope that this teacher is no longer allowed to teach, and that Alex finds the kind of teacher he deserves; one who will nurture and support him, not belittle and demean him because he is different. Isn't that what all children deserve?
If you are interested in signing a petition to have this teacher removed, you can go here, where you will also find a link to the story.
This story at once deeply saddens me and infuriates me. I am both a teacher and a mother, and I cannot comprehend what thought process led to this woman thinking that this was in any way an acceptable way to deal with children, much less a child who has special needs. How did she not see the damage she was inflicting, not only on Alex, but on the entire class? What lesson did she teach these children about how we treat each other as human beings? What lesson did she teach them about understanding those who are different than we are? Instead of teaching them about patience and compassion, she taught them that it is okay to ridicule and demean. Instead of teaching them acceptance, she taught them to exclude and ostracize. What a terrible legacy to leave her students.
And what about Alex. I cried when I read this because it does hit so close to home. People who know little about Asperger's will often look at a child and see someone who is bothersome or annoying. I know my son wants more than anything just to have friends. He longs to fit in and be accepted, but it is a growing challenge for him to connect to other kids in meaningful ways, though he tries very hard to do just that. Children with Asperger's lack the kind of social cues that come naturally to the rest of us, such as the ability to read facial expression or body language. They don't perceive subtleties in tone. They don't get sarcasm. Children with Aspergers thrive on structure and routine and often have difficulties coping with changes to routine. Alex and his family had only moved to the area this January, a huge change that can be very difficult for children like Alex.
Children with Aspergers often have an intense interest in a very narrow range of subjects, and have uncommon knowledge about their preferred subjects. This can cause difficulties on the playground or in group settings when the child literally cannot switch tracks to engage in another type of play, and cannot understand why others don't want to play the same way s/he does. The child will often talk a lot about the favorite subject, with one-sided conversations being common. They don't know how to give and take in conversation. For Nick, when he gets started talking about pirates he simply cannot turn it off until every last thought is out of his head and verbalized. This can take a long time! In a social situation, this can create barriers to forming friendships.
Children with Asperger's very often also have symptoms of sensory integration disfunction. They have heightened sensitivity and can easily become overstimulated by loud noises, bright lights, or textures. When Nick is overwhelmed by his environment, it affects his ability to focus and follow along. I imagine much of little Alex's behavior problems can be attributed to this.
Reading stories like Alex's makes me anxious for Nick. Thus far, we have been blessed with truly remarkable teachers who see Nick for who he is and know how to support him and guide him. But I fear that will not always be the case. It is going to be challenging enough for him to navigate the often treacherous waters of social interaction with his peers, without having to worry that a teacher might someday also be one of his tormentors.
Little Alex should never have been treated that way, no matter what behavior challenges he presented. Nor should his peers have been taught that it is okay to treat others in this fashion. I can only hope that this teacher is no longer allowed to teach, and that Alex finds the kind of teacher he deserves; one who will nurture and support him, not belittle and demean him because he is different. Isn't that what all children deserve?
If you are interested in signing a petition to have this teacher removed, you can go here, where you will also find a link to the story.
Friday, May 16, 2008
My Special Boy at the Special Games
Not to be confused with the Special Olympics, for which Gabe is too young yet, a local chapter of Kiwanis hosts a Special Games event for local kids with special needs. There is an opening ceremony with parade and lots of events for the kids to "compete." It was a wonderful day, despite the 100 degree temperature. Peanut really had a grand time participating! Due to the extreme heat, the athletes lost steam after the first couple of events, and everyone started to break for refreshments and snacks early. They ended up breaking down the events early, I think for safety's sake. The two events Gabe participated in were the Flag Relay and the Tennis Ball Toss. I am so looking forward to this event in the future! Here are some pictures from the day and my beautiful boy having fun at the games!
Wednesday, April 2, 2008
World Autism Awareness Day
Today is the first official "World Autism Awareness Day" as decreed by UN resolution 62/139 and is one of only three official disease-specific United Nations Days. In honor of this day, I just wanted to share some facts about Autism:
* Autism is the fastest-growing serious developmental disability in the world.
* There is no medical detection or cure for autism, but early diagnosis and intervention improve outcomes.
* There is no credible medical evidence linking vaccines to Autism.
* 1 in 150 children is diagnosed with autism.
* 1 in 94 boys is on the autism spectrum.
* 67 children are diagnosed per day.
* Autism costs the nation over $90 billion per year, a figure expected to double in the next decade.
* More children will be diagnosed with autism this year than with diabetes, cancer, & AIDS combined.
* Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
* Autism is the fastest-growing serious developmental disability in the world.
* There is no medical detection or cure for autism, but early diagnosis and intervention improve outcomes.
* There is no credible medical evidence linking vaccines to Autism.
* 1 in 150 children is diagnosed with autism.
* 1 in 94 boys is on the autism spectrum.
* 67 children are diagnosed per day.
* Autism costs the nation over $90 billion per year, a figure expected to double in the next decade.
* More children will be diagnosed with autism this year than with diabetes, cancer, & AIDS combined.
* Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
Friday, March 28, 2008
Welcome to Holland
The following poem was sent to me, by a few people, when we first got the diagnosis on our Peanut. I have since shared it with others going through the same heartbreak. If you have a child with special needs, I'm sure you know this piece well. If you don't, and you haven't had the pleasure of reading it yet, I hope you enjoy it. It was written by Emily Perl Kingsley, a mother to a child with Down Syndrome.
I am often asked to describe the experience
of raising a child with a disability --
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel: It's like this...
When you're going to have a baby, it's like planning
a fabulous vacation trip -- to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, 'Welcome to Holland.'
'Holland?!?' you say. 'What do you mean, Holland?
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy.'
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy different guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you have been there for a while and catch your breath,
you look around....and you begin to notice
that Holland has windmills...and Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...
and they're all bragging about the wonderful time they had there.
And for the rest of your life, you will say
"Yes, that is where I was supposed to go.
That is what I had planned."
And the pain of that will never, ever, ever go away...
because the loss of that dream is a very significant loss.
But...
if you spend your life mourning the fact
that you didn't get to Italy, you may never be free
to enjoy the very special, the very lovely things...
about Holland.
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