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.
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.
Friday, November 16, 2012
Health Day!
I am combining a couple of things in my gratitude today since I missed yesterday, but they are all related. Overall, I am just beyond thankful for the steady good health of my family, minor complaints notwithstanding.
First, I am so grateful that Gabriel's health seems to have stabilized since we started homeschooling. It's a nice change to not have to be at so many doctors' offices so often. There was a time where we'd be at one doctor or another several times a month. Now we only have to see some of them only once a year or once every couple of years. I am grateful Nick and Elijah have strong immune systems and I don 't have to worry about their health the way I worry about Gabe's. Gabe is still at high risk for so many things so the worry is ever present, but we've made it ten years and have been very very lucky.
Second, I am grateful to live in a place where we have access to such stellar health care facilities. Most of Gabe's specialists are at Stanford, and there aren't enough good things to say about how well they care for kids AND the families. When Gabe had his open heart surgery there, his surgeon came in to talk to us beforehand and he had such a calming and caring way about him, and he greatly reduced our fear and anxiety. I've not once, in ten years, had a single bad experience with any interaction.
Third, I am super grateful for the trainers at my gym. Most of the classes I take are lead by Denise, who is just an amazing person. She pushes me to achieve my best, she is patient and creative about accommodating me when have put too much strain on parts of my body. All the times I have injured myself (including the current shoulder issues I am having) have been at home or doing things in my day to day life *cough*kids*cough*. And when that happens, she makes sure I can still get a good workout in without exacerbating the injury and she makes me feel better about what I am capable of achieving. "You can do this" she tells me when I am not so sure I can, and she is always right. She is there to believe in me when I don't. On those days where I have no motivation, she provides it so that by the end I am feeling recharged and strong. And on occasion, she has also provided a shoulder to cry on, when burning calories isn't enough to relieve the stresses of my life. I have also been coached and pushed by her husband, Brett, who also is great at pushing and encouraging, and making us laugh. He has a great sense of humor and that helps too! The classes are always fun and challenging and different. It's just an all around great place to get your fitness needs met.
Lastly, I am thankful to live in an area where good fresh produce is so easily accessible. Going to the Farmer's Market with the boys on Sunday has become a tradition I love, and having so many kinds of great fresh fruits and vegetables available year round makes eating well so much easier.
I still have improvements to make to be my healthiest, but it's a lot easier with great support and access to such great food.
First, I am so grateful that Gabriel's health seems to have stabilized since we started homeschooling. It's a nice change to not have to be at so many doctors' offices so often. There was a time where we'd be at one doctor or another several times a month. Now we only have to see some of them only once a year or once every couple of years. I am grateful Nick and Elijah have strong immune systems and I don 't have to worry about their health the way I worry about Gabe's. Gabe is still at high risk for so many things so the worry is ever present, but we've made it ten years and have been very very lucky.
Second, I am grateful to live in a place where we have access to such stellar health care facilities. Most of Gabe's specialists are at Stanford, and there aren't enough good things to say about how well they care for kids AND the families. When Gabe had his open heart surgery there, his surgeon came in to talk to us beforehand and he had such a calming and caring way about him, and he greatly reduced our fear and anxiety. I've not once, in ten years, had a single bad experience with any interaction.
Third, I am super grateful for the trainers at my gym. Most of the classes I take are lead by Denise, who is just an amazing person. She pushes me to achieve my best, she is patient and creative about accommodating me when have put too much strain on parts of my body. All the times I have injured myself (including the current shoulder issues I am having) have been at home or doing things in my day to day life *cough*kids*cough*. And when that happens, she makes sure I can still get a good workout in without exacerbating the injury and she makes me feel better about what I am capable of achieving. "You can do this" she tells me when I am not so sure I can, and she is always right. She is there to believe in me when I don't. On those days where I have no motivation, she provides it so that by the end I am feeling recharged and strong. And on occasion, she has also provided a shoulder to cry on, when burning calories isn't enough to relieve the stresses of my life. I have also been coached and pushed by her husband, Brett, who also is great at pushing and encouraging, and making us laugh. He has a great sense of humor and that helps too! The classes are always fun and challenging and different. It's just an all around great place to get your fitness needs met.
Lastly, I am thankful to live in an area where good fresh produce is so easily accessible. Going to the Farmer's Market with the boys on Sunday has become a tradition I love, and having so many kinds of great fresh fruits and vegetables available year round makes eating well so much easier.
I still have improvements to make to be my healthiest, but it's a lot easier with great support and access to such great food.
Wednesday, November 14, 2012
My Neighborhood
"It's a beautiful day in this neighborhood, a beautiful day for a neighbor,
Would you be mine? Could you be mine?
It's a neighborly day in this beautywood, a neighborly day for a beauty
Would you be mine? Could you be mine?
I have always wanted to have a neighbor just like you.
I've always wanted to live in a neighborhood with you.
So let's make the most of this beautiful day. Since we're together we might as well say
Would you be mine? Could you be mine?
Won't you be my neighbor?
Won't you please? Won't you please? Please, won't you be my neighbor?"
Would you be mine? Could you be mine?
It's a neighborly day in this beautywood, a neighborly day for a beauty
Would you be mine? Could you be mine?
I have always wanted to have a neighbor just like you.
I've always wanted to live in a neighborhood with you.
So let's make the most of this beautiful day. Since we're together we might as well say
Would you be mine? Could you be mine?
Won't you be my neighbor?
Won't you please? Won't you please? Please, won't you be my neighbor?"
I love my neighborhood. I have such wonderful neighbors, many of whom are dear friends. My next door neighbors have been such a source of inspiration and support and comfort. They surprised us by decorating our house after the birth of each of our boys. When we found out Gabe would have Down Syndrome, they were right there with love and encouragement. Whenever Gabe was in the hospital, they were there to help care for Nicholas. When Gabe had his open heart surgery, I sobbed on their shoulders. For Nick, who has always struggled to make friends, their two youngest kids have been his best friends from day one, and even though they are both in high school now, Nick still considers them his best friends, and they have loved all my boys unconditionally always. When they moved away, our hearts were broken (especially the boys) and when they came back, we were so happy! We love them like family, because they are a very important part of ours.
Over the years, as we have come to know new neighbors all along our street and down neighboring streets, our circle of friends has grown. It's the kind of neighborhood where there will always be someone there for last minute needs. We boo each other at Halloween and Elf each other at Christmas. The boys and I have already started putting together the baskets for when Elfing starts! I love living here, among these amazing and loving people. It's the best place to have a family and a home.
Tuesday, November 13, 2012
Catching Up, A Whollatta Gratitude
Due to a rather hectic schedule and a coldfromhell that had me asleep at every possible moment in between everything else, I am seven days behind on my gratitude, so this is going to be one big blog post! I'll try to condense, but some things will be harder than others to keep short. So here, in no particular order, are some of the things I have thought about recently and am extremely grateful for:
* The Girlfrenz - I cannot imagine life without these women. We have been friends for more than 3 decades, since childhood. They know every embarrassing thing about me, and love me anyway. They have been there for every moment, big and little, one of them is also Godmother to my Wild Things. It's no wonder that when life's pressures push me to the cracking point, my Hunny says "Pack your bags and go spend the night with the Girlfrenz." If it weren't for them, I would never have stepped foot on a plane knowing I would be coming down without it. I know I still give you a hard time Princess, but you should know I am truly so grateful for the experience of skydiving with you. Sorry your video guy jumped with me instead. We try to spend our birthdays together, and I am embarrassed to say I missed this last birthday get together because I over-committed myself and stretched myself too thin. But my Girlz forgive me because they rock and I can't wait to see them again soon, and have a nice Mexican, or maybe not-good-Italian, dinner. I could write a book about my Girlfrenz. What I should do is get a good video camera and just start recording all our time together, and eventually make a movie out if it because It would make people laugh hysterically and cry with joy. But I will leave it at this: I am so lucky and grateful to have had you in my life all these years and I look forward to growing old together and embracing mischief as we do. Love you Girlfrenz!!
*My cousin, Kris. I have plenty of cousins, and I adore all of them, but Kris is the one who has always been more like a sister. She has always been there for me. She has raised two boys and always has a knowing smile and a bit of advice when my boys act too much like boys. She has a wicked sense of humor and can always make me laugh. She even trusted me to take care of her baby girl, Daisy the dog, when she moved and couldn't take Daisy with her. Like the Girlfrenz, Kris has been through every up and down, and never let me down. Thanks Cous. You are the best. Love you more than words can say.
*Our school district. We are so lucky to live in such a great district. Having three kids with varying degrees of special needs can be a bit of a challenge when it comes to navigating education. We are so fortunate to be in a district that has been exemplary in supporting all my kids. Especially Nick. Too many districts would let kids like him just fall through the cracks because he happens to be smart. Thank God our district recognizes how the very unique challenges of Asperger's can hold a child back, and addresses that, and sets our kids up to succeed in spite of their challenges. Elijah has also received stellar support and despite his learning disabilities, loves learning and being in school, and going to his "special clas," as he calls it. Even though we homeschool Gabe, when he attended in the district, he had amazing teachers, and I can say that every teacher we have had from the time Nick started Kindergarten, has truly been outstanding.
*Veterans - Veterans Day was this weekend, and I, along with everyone else I know am very grateful to all those who serve to protect our freedoms. That group includes my dad, my uncles, my friends' dads, and my friends (Charlie and Kristin come to mind just now). Thank you.
*Angels on Stage: I am going to dedicate a whole separate blog post to this organization soon, because there is so much I want to share and let people know about them. For now, let me just say how grateful I am for what these people do for my kids and all the kids they serve. As I see Nick come bursting out of his shell this season, I am reminded what a gift these people are, and how truly special and unique this organization is. Life changing, in so many ways. Best thing to happen to my family since my kids. Thank you. From every nanometer of my heart. I love you all more than words can convey.
*The Village: You know who you are. Due in no small part to my involvement with the aforementioned Angels on Stage, I have found my village - that group of moms who share this crazy journey of "special needs parent." They are my safety net and my sanity. When I feel utterly broken and not at all good enough to do this, they remind me that I am and they help make me feel whole again. They appreciate those moments that, coming from a typical kid could only be described as disturbing, but with our kids are the source of a great deal of laughter. Because if we can't laugh at the absurdity, we will never make it. Good golly, do we ever laugh! We laugh and we cry, sometimes a lot, and we pick each other up and carry each other when need be, and we make sure each of us knows we are never ever alone, no matter how isolated we may sometimes feel. They save me. Thank you God, for this Village I love so dearly.
*Love - How lucky am I to have so many, and to love them all so much. My Hunny, my parents, my children, my brother, cousins and family, My Girlfrenz and my Village . . . and the list doesn't end there. My life is so incredibly full of so much love. Whatever did I do to deserve all of it? God takes care of us so many ways. My heart and my life are so very full. Thank you God, for each every one you have put in my life.
* The Girlfrenz - I cannot imagine life without these women. We have been friends for more than 3 decades, since childhood. They know every embarrassing thing about me, and love me anyway. They have been there for every moment, big and little, one of them is also Godmother to my Wild Things. It's no wonder that when life's pressures push me to the cracking point, my Hunny says "Pack your bags and go spend the night with the Girlfrenz." If it weren't for them, I would never have stepped foot on a plane knowing I would be coming down without it. I know I still give you a hard time Princess, but you should know I am truly so grateful for the experience of skydiving with you. Sorry your video guy jumped with me instead. We try to spend our birthdays together, and I am embarrassed to say I missed this last birthday get together because I over-committed myself and stretched myself too thin. But my Girlz forgive me because they rock and I can't wait to see them again soon, and have a nice Mexican, or maybe not-good-Italian, dinner. I could write a book about my Girlfrenz. What I should do is get a good video camera and just start recording all our time together, and eventually make a movie out if it because It would make people laugh hysterically and cry with joy. But I will leave it at this: I am so lucky and grateful to have had you in my life all these years and I look forward to growing old together and embracing mischief as we do. Love you Girlfrenz!!
*My cousin, Kris. I have plenty of cousins, and I adore all of them, but Kris is the one who has always been more like a sister. She has always been there for me. She has raised two boys and always has a knowing smile and a bit of advice when my boys act too much like boys. She has a wicked sense of humor and can always make me laugh. She even trusted me to take care of her baby girl, Daisy the dog, when she moved and couldn't take Daisy with her. Like the Girlfrenz, Kris has been through every up and down, and never let me down. Thanks Cous. You are the best. Love you more than words can say.
*Our school district. We are so lucky to live in such a great district. Having three kids with varying degrees of special needs can be a bit of a challenge when it comes to navigating education. We are so fortunate to be in a district that has been exemplary in supporting all my kids. Especially Nick. Too many districts would let kids like him just fall through the cracks because he happens to be smart. Thank God our district recognizes how the very unique challenges of Asperger's can hold a child back, and addresses that, and sets our kids up to succeed in spite of their challenges. Elijah has also received stellar support and despite his learning disabilities, loves learning and being in school, and going to his "special clas," as he calls it. Even though we homeschool Gabe, when he attended in the district, he had amazing teachers, and I can say that every teacher we have had from the time Nick started Kindergarten, has truly been outstanding.
*Veterans - Veterans Day was this weekend, and I, along with everyone else I know am very grateful to all those who serve to protect our freedoms. That group includes my dad, my uncles, my friends' dads, and my friends (Charlie and Kristin come to mind just now). Thank you.
*Angels on Stage: I am going to dedicate a whole separate blog post to this organization soon, because there is so much I want to share and let people know about them. For now, let me just say how grateful I am for what these people do for my kids and all the kids they serve. As I see Nick come bursting out of his shell this season, I am reminded what a gift these people are, and how truly special and unique this organization is. Life changing, in so many ways. Best thing to happen to my family since my kids. Thank you. From every nanometer of my heart. I love you all more than words can convey.
*The Village: You know who you are. Due in no small part to my involvement with the aforementioned Angels on Stage, I have found my village - that group of moms who share this crazy journey of "special needs parent." They are my safety net and my sanity. When I feel utterly broken and not at all good enough to do this, they remind me that I am and they help make me feel whole again. They appreciate those moments that, coming from a typical kid could only be described as disturbing, but with our kids are the source of a great deal of laughter. Because if we can't laugh at the absurdity, we will never make it. Good golly, do we ever laugh! We laugh and we cry, sometimes a lot, and we pick each other up and carry each other when need be, and we make sure each of us knows we are never ever alone, no matter how isolated we may sometimes feel. They save me. Thank you God, for this Village I love so dearly.
*Love - How lucky am I to have so many, and to love them all so much. My Hunny, my parents, my children, my brother, cousins and family, My Girlfrenz and my Village . . . and the list doesn't end there. My life is so incredibly full of so much love. Whatever did I do to deserve all of it? God takes care of us so many ways. My heart and my life are so very full. Thank you God, for each every one you have put in my life.
Wednesday, November 7, 2012
My President and My Country
Today, I join many in being grateful for our President, and that our country had the forethought to give him another four years. I know many of the other side of the political spectrum do not share this gratitude, but I am hopeful that, with time, they will be able to see that they, too, have much to be thankful for. His re-election means so many things. The biggest thing is that nobody in this country is going to have their healthcare taken away from them. This is so important. No one should be denied access to healthcare. No one. And now we are on the path to making sure no one ever is. I am also so grateful that the President wasn't the only winner last night. The other big winner? LOVE. Love won. Four states voted and declared unequivocally that LOVE IS LOVE IS LOVE IS LOVE. Like healthcare, no one should ever be told they cannot love who they love, or that they cannot dedicate their lives to living as one with the one they love, or that they don't deserve to have a family. And now, we are on the path to being a nation where no one will be denied these very basic human rights. Yesterday was a very good day for our nation, even if there are those who cannot or will not see it. It was a good day for the sick, the poor, and everyone who loves. I believe wholeheartedly that Jesus is smiling. And I am grateful to witness it and be a part of it.
Tuesday, November 6, 2012
My Dad
Today I want to share my gratitude for my Dad. My dad is the kind of guy who will give all he has for others in need, even if it is to his detriment. He has opened his home and taken in more people in his life than I can recount. Some for a few days, some for months, some for more than a year. His home isn't big, but there is always room for anyone in need. His generous nature goes beyond that - he has always found a way to provide support to people who need it, be it with his money, or his home, his time, or his hands. He is always there to help, to support, to provide, to rescue. There have been times when I did not agree with his choices to help people I felt would or were taking advantage of him, but those are the examples from which I have learned the most. He (and of course, my Mom) have taught me through their example, that it is not our place to judge whether someone is worthy of our help or support. If we are going to truly live a life modeled after Christ, then our help must come without reservation, and without judgement. It is not our place to decide who is worthy of a hand up and who is not. When my parents see someone in need, no matter the circumstance leading to that need, they provide. End of story. Thank you for that example Dad (and Mom). I love you so much and only hope I can live up to your legacy.
Monday, November 5, 2012
My Mom
Today - and everyday - I am so immensely grateful for my mom. I really don't think I could get through this journey called motherhood without her support and guidance. She is kind and generous and loving to a fault, and she is the strongest woman I know. I never really understood how strong she is until I finally became a mom myself. Now that I have three kids, like she did, I am more in awe of her than ever. The biggest fear of every mother is something happening to their children. My mom lived that nightmare, and through it all, never lost herself or her ability to care for my brother and me. I was eight when my youngest brother, Gabriel, died at the age of 17 months. I know she cried all the time, but the memories of her doing so are vague. The stronger memories for me, are the ones of her always being there for me, to comfort my fears, dry my tears and answers my questions, of which there were many.
When I contemplate what it must be like to lose a child, I can't fathom it. All I can think is that it would leave me so broken, I couldn't possibly keep going. How do those moms do it? How did mine? I don't know. All I know is that she survived, and carried my brother and me with her, and I can never express how grateful I am for her strength.
She has carried me with her strength over and over again; when we got the diagnosis for our Gabriel, when she gave us her blessing to name him Gabriel, when he had to have open heart surgery, when he was rushed to the hospital in an ambulance from Yosemite, when Nicholas was diagnosed . . .over and over and over again, when I needed someone to hold me up and assure me we would make it through, she has been there.
Thank you Mom. I love you and am so grateful for you. Thank you God for giving me such an amazing mom. I pray you will let me keep her for many more years to come.
When I contemplate what it must be like to lose a child, I can't fathom it. All I can think is that it would leave me so broken, I couldn't possibly keep going. How do those moms do it? How did mine? I don't know. All I know is that she survived, and carried my brother and me with her, and I can never express how grateful I am for her strength.
She has carried me with her strength over and over again; when we got the diagnosis for our Gabriel, when she gave us her blessing to name him Gabriel, when he had to have open heart surgery, when he was rushed to the hospital in an ambulance from Yosemite, when Nicholas was diagnosed . . .over and over and over again, when I needed someone to hold me up and assure me we would make it through, she has been there.
Thank you Mom. I love you and am so grateful for you. Thank you God for giving me such an amazing mom. I pray you will let me keep her for many more years to come.
Sunday, November 4, 2012
Elijah James - My Monkey
Of all my boys, he is the most "boy." He is always in motion, always loud, always has something smudged on his face. He is the wildest of my Wild Things. He earned the nickname "monkey" early on, when he showed a propensity for climbing up on anything and everything. His hair is always a mess, but I don't want to cut it off and lose those beautiful curls. Plus, his hair matches his wild personality. He is full of energy, but also full of affection and love. He is kind and caring, and like his brothers, loves to hug and cuddle and kiss those he loves. He is the one who will age me the fastest, but he will be the one who takes care of me when I need him. I know that because he tells me all the time "Mommy, I want to take care of you."
One of the things I love watching is the way he follows and plays with Nick. He absolutely worships his big brother, and always wants to be doing exactly what Nick is doing. Sometimes Nick finds it bothersome, but mostly he loves being looked up to, and I am so glad that they get along so wonderfully despite their age difference.
Despite his learning challenges, he loves school, and is always wanting to learn more, and create things. During Halloween this year, when we got boo'd, he immediately set to work making a bunch of things for his friend down the street so we could boo him. He drew pictures, and made a secret agent weapon, and he made a bow and arrow out of pink duct tape, a rubber band and a paperclip. Toothpicks were the arrows. I hope he never loses that drive to learn and create.
He really did complete our family. He is the perfect baby brother, my beautiful wild child, my Elijah James. Love you baby boy! To the end of the universe!
Thank you God, for all of my beautiful amazing Wild Things!
One of the things I love watching is the way he follows and plays with Nick. He absolutely worships his big brother, and always wants to be doing exactly what Nick is doing. Sometimes Nick finds it bothersome, but mostly he loves being looked up to, and I am so glad that they get along so wonderfully despite their age difference.
Despite his learning challenges, he loves school, and is always wanting to learn more, and create things. During Halloween this year, when we got boo'd, he immediately set to work making a bunch of things for his friend down the street so we could boo him. He drew pictures, and made a secret agent weapon, and he made a bow and arrow out of pink duct tape, a rubber band and a paperclip. Toothpicks were the arrows. I hope he never loses that drive to learn and create.
He really did complete our family. He is the perfect baby brother, my beautiful wild child, my Elijah James. Love you baby boy! To the end of the universe!
Thank you God, for all of my beautiful amazing Wild Things!
Saturday, November 3, 2012
Gabriel, My Peanut, and Game-Changer
Oh where do I begin? Gabriel George, my beautiful, silly, stubborn, wise little man. The one who took us suddenly off our well planned life path and plopped us down in a whole new world. One can never imagine what life will be like once children arrive, but it is even less imaginable when your child arrives with so many challenges. We start out in what feels like darkness, only to have the most brilliant light illuminate the way. And that light shows us colors we would not have seen otherwise, and the journey is filled with the depth of joy we never knew was possible.
Gabriel is that light, and that joy. He helps me appreciate the little things, and to discern the important things from the not-so-important things. In the most simple, yet profound ways, he brings truth to my life. Those who know me personally know that sometimes I get frustrated with my house. It's an average sized house, but with five people, thousands of comic books and what seems like a billion legos, I often feel like I have no space to breathe, and lament that my house is just too small for us. The other night was one of those nights when I was frustrated with the clutter and lack of space and I went to bed thinking about how to create more space. In the morning, I was awakened by kisses from Gabriel, who had come in hours earlier to cuddle and sleep, and the very first thing he said to me was this: "Mommy, your house so big." How is it that he even thought to say that? I don't know, but it was exactly what I needed to hear. We are so blessed with home in which to live and be together. And the clutter simply does not matter.
And that is what Gabriel does. He cuts through all the nonsense and trivialities of life, and shows us what is real and what matters. He is my teacher, my life coach. He keeps me centered and pulls me back when I get off track. I don't know what my life would have been like had it gone down the path I had planned for, but I am sure I would not be as happy, or as grateful. I love this boy more than any words can ever convey. Thank you Gabriel, for leading me through this life. Thank you God, for giving me Gabriel as my guide.
Gabriel is that light, and that joy. He helps me appreciate the little things, and to discern the important things from the not-so-important things. In the most simple, yet profound ways, he brings truth to my life. Those who know me personally know that sometimes I get frustrated with my house. It's an average sized house, but with five people, thousands of comic books and what seems like a billion legos, I often feel like I have no space to breathe, and lament that my house is just too small for us. The other night was one of those nights when I was frustrated with the clutter and lack of space and I went to bed thinking about how to create more space. In the morning, I was awakened by kisses from Gabriel, who had come in hours earlier to cuddle and sleep, and the very first thing he said to me was this: "Mommy, your house so big." How is it that he even thought to say that? I don't know, but it was exactly what I needed to hear. We are so blessed with home in which to live and be together. And the clutter simply does not matter.
And that is what Gabriel does. He cuts through all the nonsense and trivialities of life, and shows us what is real and what matters. He is my teacher, my life coach. He keeps me centered and pulls me back when I get off track. I don't know what my life would have been like had it gone down the path I had planned for, but I am sure I would not be as happy, or as grateful. I love this boy more than any words can ever convey. Thank you Gabriel, for leading me through this life. Thank you God, for giving me Gabriel as my guide.
Friday, November 2, 2012
Nicholas, My Pickle-ous
I am so thankful for my Pickle, Nicholas. I can't believe he is already twelve years old! Where did all those years go? I love that, at this pre-teen phase, when so many kids are no longer wanting to hold a parent's hand or express affection, that my sweet boy is still full of hugs and kisses. He still holds my hand as we walk, or when I drive, and he hugs and kisses all of us constantly.
I especially love the way he engages with his brothers. I was afraid that the five year gap between him and Elijah would mean limited commonalities. But Nick loves to play with them. He wrestles with them and plays Legos with them. When asked, he reads them stories, and he does it with flair, leaving the Gabe and EJ cracking up, no matter what the story.
I love his creative mind. He is constantly creating stories, some he turns into comic books, others he just tells you as he makes it up on the fly. He has such an active mind and I look forward to seeing where that takes him as he grows into adulthood.
One of the things I really admire about him is that he has remained a social boy who wants to engage people . Socially, he struggles, and has had to deal with rejection and bullying, but instead of letting that turn him into an introvert, he continues to put himself out there. He talks to complete strangers when we are on an elevator, or crowds we are with when standing in line. He will engage in play with kids he has just met in a park or a store or anywhere. I love that about him.
I love that he is learning how to conquer his fears. Two years ago, he was terrified to get on a stage. He now has a speaking role in a play. He is afraid of heights, but he just went on Splash Mountain for the first time and loved it. Still working up to the roller coaster, but he will get there.
Nicholas is such a gift, to me, and to his brothers. I am so grateful I got to be his mom. Love you Pickle, to the end of the universe!
I especially love the way he engages with his brothers. I was afraid that the five year gap between him and Elijah would mean limited commonalities. But Nick loves to play with them. He wrestles with them and plays Legos with them. When asked, he reads them stories, and he does it with flair, leaving the Gabe and EJ cracking up, no matter what the story.
I love his creative mind. He is constantly creating stories, some he turns into comic books, others he just tells you as he makes it up on the fly. He has such an active mind and I look forward to seeing where that takes him as he grows into adulthood.
One of the things I really admire about him is that he has remained a social boy who wants to engage people . Socially, he struggles, and has had to deal with rejection and bullying, but instead of letting that turn him into an introvert, he continues to put himself out there. He talks to complete strangers when we are on an elevator, or crowds we are with when standing in line. He will engage in play with kids he has just met in a park or a store or anywhere. I love that about him.
I love that he is learning how to conquer his fears. Two years ago, he was terrified to get on a stage. He now has a speaking role in a play. He is afraid of heights, but he just went on Splash Mountain for the first time and loved it. Still working up to the roller coaster, but he will get there.
Nicholas is such a gift, to me, and to his brothers. I am so grateful I got to be his mom. Love you Pickle, to the end of the universe!
Thursday, November 1, 2012
My Hunny
There are 61 days left in the year. My goal for the rest of the year is to share my blessings each day. I know a lot of people are doing the gratitude posts each day of November on Facebook, but I wanted to go into more depth than would be appropriate for a Facebook post, so I am blogging instead.
I am starting with my ROCK. My amazing and wonderful Robert. I really don't know how I got so lucky. He is such a stellar husband and father. I am so thankful for him in so many ways. He works very hard at his job. He is crazy smart, and is very well respected in his job. He goes to work and often works long hours to make sure we are cared for, and allows me to continue to stay home and educate Peanut. He sacrifices so much to do that. He misses the opportunities I have to go out and do fun thins with the Wild Things. It was his idea to take Pickle to Disneyland for his 12th birthday, and I thought he should be the one to take him, but he was unable to be away from work, so I got to go instead. He really needs, and deserves to be able to do those things too.
He "gets" me. We are different in certain ways, yet we fit together perfectly. While he prefers to be with just our family, I need time to be social with friends. He understands the importance of time spent with my friends and he encourages it.
When we are together, he is affectionate in big ways and small. Hugs, kisses, cuddles are part of my everyday life with him. He sets a perfect example for our boys of how to treat a woman; with kindness and respect and love.
He helps with the house, doing laundry and cleaning. He reminds me, when I worry or stress over my inability to keep up with the house, that I am not staying home to clean, but staying home to teach. I have a job in educating our son, and the housework is secondary to that, so he is forgiving and supportive when he comes home and the house is worse than when he left it.
I simply adore watching him engage with the boys. In addition to the requisite rough housing and other shenanigans that come with having boys, he also cuddles and kisses them daily. He encourages them when they are frustrated and pushes them when they don't try their best. His faith in them and in what they can achieve inspires me. It is said the divorce rate among couples who have children with special needs is pretty high. We have three kids with special needs and we are rock solid. That is because of him.
Thank you God, for this man I love with my heart and soul. Please watch over and protect him always.
I am starting with my ROCK. My amazing and wonderful Robert. I really don't know how I got so lucky. He is such a stellar husband and father. I am so thankful for him in so many ways. He works very hard at his job. He is crazy smart, and is very well respected in his job. He goes to work and often works long hours to make sure we are cared for, and allows me to continue to stay home and educate Peanut. He sacrifices so much to do that. He misses the opportunities I have to go out and do fun thins with the Wild Things. It was his idea to take Pickle to Disneyland for his 12th birthday, and I thought he should be the one to take him, but he was unable to be away from work, so I got to go instead. He really needs, and deserves to be able to do those things too.
He "gets" me. We are different in certain ways, yet we fit together perfectly. While he prefers to be with just our family, I need time to be social with friends. He understands the importance of time spent with my friends and he encourages it.
When we are together, he is affectionate in big ways and small. Hugs, kisses, cuddles are part of my everyday life with him. He sets a perfect example for our boys of how to treat a woman; with kindness and respect and love.
He helps with the house, doing laundry and cleaning. He reminds me, when I worry or stress over my inability to keep up with the house, that I am not staying home to clean, but staying home to teach. I have a job in educating our son, and the housework is secondary to that, so he is forgiving and supportive when he comes home and the house is worse than when he left it.
I simply adore watching him engage with the boys. In addition to the requisite rough housing and other shenanigans that come with having boys, he also cuddles and kisses them daily. He encourages them when they are frustrated and pushes them when they don't try their best. His faith in them and in what they can achieve inspires me. It is said the divorce rate among couples who have children with special needs is pretty high. We have three kids with special needs and we are rock solid. That is because of him.
Thank you God, for this man I love with my heart and soul. Please watch over and protect him always.
Tuesday, October 9, 2012
I Can't Believe We Are Still Having This Conversation
A couple of weeks ago, Ann Coulter used the R-word to describe half the country. As far Ms. Coulter goes, this is hardly shocking. We live in a country where hate sells and she is the number one peddler of the commodity. She should apologize, of course, to the millions in the special needs community, who are harmed by that word daily, but she won't. Apologies are for grownups and decent human beings. Ann is neither, so I'm not going to waste my time asking.
No, I'm more interested in the thousands of regular people out there chatting about this (or anything else) on Facebook and in comments on blogs like this one. What shocks me is how easy it is for people to continue to use this word, and to DEFEND using it, knowing fully the pain it causes others. I have heard every lazy excuse there is, none of which has any validity. I have had people quote the dictionary to me, as if I, a college educated woman, professional educator by trade and special needs advocate by way of my children, somehow did not know that the technical definition of the word is "slow." Yes, we know what the definition is, thankyouverymuch. I have had people screech "First Amendment!" as if what we have been asking is not simple consideration, and instead a full constitutional amendment banning the use of the word. Yes, you have a fully protected right to use whatever words you may choose. We are not trying to outlaw anything. We are merely asking that you consider, for the briefest moment, the effect of the words you choose. No need to hide behind the Bill of Rights. The most offensive defense I've seen, however, is the one that claims if the intent of the person using the word was "innocent", then the person who is hurt by the word is the one at fault for allowing their feelings to give the word power.
So, let's get real. Here is a fact, and the only fact that really matters. The word "retard" and every variation in use (including retarded, libtard, conservatard . . .) is hurtful. It is a cruel word that causes pain to human beings. Period. Nothing else matters. If you use that word, whether to be self-deprecating or otherwise, you have and will HURT people. That's it. Your intimate knowledge of Mr. Webster's dictionary does not absolve you. Your constitutional rights do not make it less cruel. Yes, you have the absolute right to continue to use that word. You DO NOT, however, have the right to tell others that their feelings are invalid. You DO NOT have the right to dictate how others feel or how they react. So, if you feel your right to use cruel language is more important than the feelings of those around you, go ahead and use it. But do the rest of us a favor and own it. Truly, OWN. IT. Don't cower behind the Constitution or a dictionary. Speak the truth. Tell the world "I use this word because the feelings of others do not matter to me. I will use this word because I don't care about those it hurts." You'll still be an ass, but at least you'll be an honest one, and that's one better than Ann Coulter.
No, I'm more interested in the thousands of regular people out there chatting about this (or anything else) on Facebook and in comments on blogs like this one. What shocks me is how easy it is for people to continue to use this word, and to DEFEND using it, knowing fully the pain it causes others. I have heard every lazy excuse there is, none of which has any validity. I have had people quote the dictionary to me, as if I, a college educated woman, professional educator by trade and special needs advocate by way of my children, somehow did not know that the technical definition of the word is "slow." Yes, we know what the definition is, thankyouverymuch. I have had people screech "First Amendment!" as if what we have been asking is not simple consideration, and instead a full constitutional amendment banning the use of the word. Yes, you have a fully protected right to use whatever words you may choose. We are not trying to outlaw anything. We are merely asking that you consider, for the briefest moment, the effect of the words you choose. No need to hide behind the Bill of Rights. The most offensive defense I've seen, however, is the one that claims if the intent of the person using the word was "innocent", then the person who is hurt by the word is the one at fault for allowing their feelings to give the word power.
So, let's get real. Here is a fact, and the only fact that really matters. The word "retard" and every variation in use (including retarded, libtard, conservatard . . .) is hurtful. It is a cruel word that causes pain to human beings. Period. Nothing else matters. If you use that word, whether to be self-deprecating or otherwise, you have and will HURT people. That's it. Your intimate knowledge of Mr. Webster's dictionary does not absolve you. Your constitutional rights do not make it less cruel. Yes, you have the absolute right to continue to use that word. You DO NOT, however, have the right to tell others that their feelings are invalid. You DO NOT have the right to dictate how others feel or how they react. So, if you feel your right to use cruel language is more important than the feelings of those around you, go ahead and use it. But do the rest of us a favor and own it. Truly, OWN. IT. Don't cower behind the Constitution or a dictionary. Speak the truth. Tell the world "I use this word because the feelings of others do not matter to me. I will use this word because I don't care about those it hurts." You'll still be an ass, but at least you'll be an honest one, and that's one better than Ann Coulter.
Thursday, October 4, 2012
So Let's Talk about "Awareness"
So October is upon us, with its cooler days and more colorful neighborhoods, pumpkin scented candles and apples baking in the oven, leaf piles and pumpkin patches. It also means endless reminders to raise our awareness. October is breast cancer awareness month, and domestic violence awareness month, and pregnancy loss & infant loss awareness month, and Down syndrome awareness month. It is "awareness" month for so many things, I feel like the term awareness is losing its meaning. What is it we are hoping to accomplish with all this awareness anyway? Is there anyone out there who isn't aware of what breast cancer is, or how many woman are affected? One of my best friends from high school has been fighting that battle just this year, and she is not the first, nor will she be the last friend I know to fight it. We are so inundated with pink everywhere, I find it hard to believe there is anyone who does not know how they are supposed to check for it. Haven't we moved beyond "awareness"? Similarly, I know far too many people who have suffered pregnancy loss. It's so pervasive, I can name more people who have suffered a loss than who haven't. Is awareness the problem? I don't think so. Of course, the most personal to me is Down Syndrome awareness, and again I can't help but think awareness isn't the problem. Everyone is aware of Down syndrome. So what are we trying to do by reminding people? "It's Down syndrome awareness month. Just thought you should know." How does that improve life for my son?
It's time to move beyond awareness. I don't want people to be aware of my son. Awareness doesn't change anything. People are aware, yet they still assume, avoid, pity him, and by extension, me. I do not want people to make assumptions about, or feel sorry for my son. I want people to know my son. I want people to respect my son. I want people to accept my son. They can't do that unless they experience my son. How can they do that? When you go to the park with your children, and they play with other kids, encourage them to play with my son too. When my son engages your children, don't move them away. Do you strike up conversations with other moms? Don't avoid the mom whose kid has Down syndrome. Let your kids ask questions. We love to talk about our kids, too. Most importantly, don't think that the extra chromosome makes my son so different. It doesn't. In all the ways that matter, our kids are the same. My son can sing and dance, and read books. He can be sweet and loving and kind, but he can also be angry and stubborn too. He plays baseball and performs on stage. His is a life full of wondrous possibility, just like all kids. If you are so inclined, find out when and where the nearest Buddy Walk is and show up! Move beyond awareness. Educate, accept, include, celebrate! Eventually we can move past all these "awareness" labels and October can become "Down Syndrome Celebration Month" or "Breast Cancer Victory Month." At least, that's my goal.
It's time to move beyond awareness. I don't want people to be aware of my son. Awareness doesn't change anything. People are aware, yet they still assume, avoid, pity him, and by extension, me. I do not want people to make assumptions about, or feel sorry for my son. I want people to know my son. I want people to respect my son. I want people to accept my son. They can't do that unless they experience my son. How can they do that? When you go to the park with your children, and they play with other kids, encourage them to play with my son too. When my son engages your children, don't move them away. Do you strike up conversations with other moms? Don't avoid the mom whose kid has Down syndrome. Let your kids ask questions. We love to talk about our kids, too. Most importantly, don't think that the extra chromosome makes my son so different. It doesn't. In all the ways that matter, our kids are the same. My son can sing and dance, and read books. He can be sweet and loving and kind, but he can also be angry and stubborn too. He plays baseball and performs on stage. His is a life full of wondrous possibility, just like all kids. If you are so inclined, find out when and where the nearest Buddy Walk is and show up! Move beyond awareness. Educate, accept, include, celebrate! Eventually we can move past all these "awareness" labels and October can become "Down Syndrome Celebration Month" or "Breast Cancer Victory Month." At least, that's my goal.
Friday, June 1, 2012
I Hate Making These Kinds of Decisions
Next Wednesday, both Elijah and Nick have their "graduation" ceremonies. Nick is graduating from 5th grade, EJ from Kindergarten. At the exact same time. I realize that some people consider a kindergarten graduation to be a bit over the top, but EJ really struggled this year and made some huge gains. I also know his teacher very well, and I know the amount of effort she has put into making it a very special day for both kids and parents. Fifth grade is more of a milestone, and the ceremony will be more formal, less sentimental, I assume. Like Elijah, Nicholas also overcame much this year. It was his first and only year at this school, so there aren't the years-long friendship bonds other kids have. He has grown so much and pushed himself in ways he never has before. This was a huge year for him, and I want to celebrate him.
Unfortunately, I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion. If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom. When is it ever that easy? We explained the situation and asked for their thoughts. Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy! I want Mom!" Here is where I have to give Elijah credit. That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be. I think you're wonderful!" Wait. It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying? You're supposed to cry." Nick's response? "Ok, FINE! You can have mom." He didn't say it graciously. Robert was right there for the whole conversation, by the way. Poor Daddy. I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle. Apparently, they have no problem with that. Must be a guy thing. Maybe if Robert let them see him cry . . .
So I guess it's settled. Kind of. I still feel the mom-guilt. So now the question is "can I trust Robert to video it? And who can I ask to take pictures for me since the only good camera will be with me? Now taking volunteers.
Unfortunately, I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion. If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom. When is it ever that easy? We explained the situation and asked for their thoughts. Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy! I want Mom!" Here is where I have to give Elijah credit. That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be. I think you're wonderful!" Wait. It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying? You're supposed to cry." Nick's response? "Ok, FINE! You can have mom." He didn't say it graciously. Robert was right there for the whole conversation, by the way. Poor Daddy. I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle. Apparently, they have no problem with that. Must be a guy thing. Maybe if Robert let them see him cry . . .
So I guess it's settled. Kind of. I still feel the mom-guilt. So now the question is "can I trust Robert to video it? And who can I ask to take pictures for me since the only good camera will be with me? Now taking volunteers.
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.
Tuesday, February 14, 2012
To All My Valentines
On this Valentines Day I want to send out a huge "I LOVE YOU AND I AM SO THANKFUL FOR YOU!" I am sending this to my Hunny, of course, who loves me and encourages me everyday, and to our beautiful Wild Things, who constantly steal my heart in new and surprising ways. That these four people are my Valentines goes without saying. Today, I want to shout out to all of my other Valentines: To every friend who has ever lent me a shoulder upon which I've cried, or shared a bottle of wine along with a whine, every friend who has laughed with me, and taken adventures with me, who have been mad at me and forgiven me, I LOVE YOU! I know for some of us, we may not talk every day, and miles may prevent our regular companionship, but I know that when life throws me a curve ball, if I called at 3am and said "I need you" I know you would be there. And I hope you know I will always do the same. Valentine's Day is a day to remind the ones you love, that they are the ones you love. I am so blessed to have a long list of Valentines, and I hope you all know how special you are to me. I LOVE YOU, MY VALENTINES!
Tuesday, January 10, 2012
Hey Ferb! I Know What We're Gonna Do Today!
I promised to come back with pics from the Phineas and Ferb Party, so here I am. I think it turned out rather well, for a theme that was incredibly hard to find party supplies for. I went to our local bakery, our local cake maker's supply store, Party City, Michael' and no one had any Phineas and Ferb themed supplies. I finally found the plates/napkins/table covers at Affordable Treasures, which is why I'm going there first from now on. I paired orange & blue streamers (Phineas) and purple & yellow (Ferb) and bought a bazillion ballons in the same colors for decorations. But I was still left without a plan for a cake. I was going to attempt to make a Perry the Platypus cake myself, but the day before, my friend Charlie offered to help. Charlie is an amazing cake artist. So the night before I baked a sheet cake, then the morning of the party, Charlie transformed it into a teal platypus.
Pretty cool, eh? I planned three activities for the kids, based on the show. The first was "The Shrink-inator" in honor of Dr. Doofenschmirtz, the bumbling evil scientist who is the nemesis of Agent P, AKA Perry the Platypus. I bought sheets of Shrinky Dink plastic, traced multiples of the main characters and cut them out in circle shapes. Then I left out permanent ink markers and let the kids color them and then we shrunk them in the oven.
I made sure to use a hole punch before I baked them, so the kids can make neckalces out of them, or use them as ornaments. The next game was "Where's Perry?" a question asked at the beginning of every show by Phineas. I printed out a couple different pictures of Perry the Platypus as a secret agent, cut them out, laminated them and put them on tongue depressor sticks. Then I taped a prize on the back of each. We "hid" them all over the back yard, some more hidden than others. They got to keep the Perry puppets and the prize and put them in their bag.
The last game was the most fun, at least from the perspective of a person viewing the chaos. That last game was "You're Busted!" in honor of Candace, the big sister who is always trying to bust her brothers. I inserted different small sticker sheets into balloons before inflating them, and I had these balloons kept aside until it was time for the game. I cleaned out the playroom of any decorative balloons, then dumped the game balloons all over the floor. The object was to pop the balloons by sitting on them. The key to the fun was underinflating the balloons. So the kids mostly bounced on the balloons, as they didn't pop right away, and some needed the extra weight of an adult foot.
Lastly, here is a picture of the birthday boy, opening presents and wearing his Phineas hat. He also got a Ferb hat, which is just as awesome. Both hats were made by my girlfriend Jen, who happens to be married to Charlie, the cake artist. Yeah, Mr. and Mrs. Martha Stewart. Only nicer. =)
If you are looking for unique and fun hats, she has started a business and you can find her on Facebook. Her page is called Pineapples N' Coconuts. She is also an amazing professional photographer, if anyone in the area is looking for one. You can find her page on Facebook as well, Jen Webster Photography. Check out the newborn photos. If I weren't so old, I'd have another baby just so I can have her do the baby pictures.
So another birthday party under my belt. On to Valentine's Day!
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