Occassionally, you hear the phrase "A Random Act of Kindness". I was the lucky recipient of one of these random acts....what a great feeling :-) Thank you to the unknown woman in the car ahead of me for your generosity and kindness...it had a positive impact on my day and hopefully on others. At first, I wondered if the people behind me would each follow suit and "pay it forward" but then I realized that the favor was simply that...a favor...a random act of kindness.
Sunday, June 10, 2012
A Bill of Rights For Parents of Kids With Special Needs
I came across this by accident this morning and had to re-post. It was written by a woman who has a son with Cerebal Palsey. The blog is LovethatMax.com. If you have a child with Special Needs...or even if you don't, it's well worth the read :-) It made me cry...but it also made me laugh.
A Bill of Rights For Parents of Kids With Special Needs.
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary. * We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it. * We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too. * We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them. * We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics. * We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.
A Bill of Rights For Parents of Kids With Special Needs.
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary. * We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it. * We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too. * We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them. * We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics. * We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.
Saturday, June 9, 2012
Yippee!! I'm 4 !!
I know it's June...better late than never :-)
As hard as it is to believe for me...little elle, who by the way, is still very little...celebrated her 4th birthday on February 16, 2012. I was so excited to have my mom here to help celebrate. Unfortunately Grammy Sue was not able to make it, although she was missed. We celebrated with loved ones who truly love elle. I am so thankful to have these wonderful people in our life. They each enrich elles life eveytime they interact with her and for that, I will always love them. For me, elle's birthday is truly a celebration of her life and that she is still here with us. To be told that your child might survive until school is a feeling that I can't even begin to explain. It is certainly not what I focus on. I made a decision a long time ago to focus on the journey and not the outcome. Every birthday is another year that elle is proving them wrong.
Whether you are new to the blog or have been a loyal follower, by now you have figured out that I write what comes to mind and punctuation doesn't really count here...it's my blog...I can do what I want :-) This leads me to why elle's name usually always appears in lower case. It's not because I am to lazy to hit the shift key but because elle is little, no matter what she will always be my little elle and if she could write her name she would prefer to write it in little letters. I know this :-) Her lunch bag has her name embroidered on it in lower case and her name is always on her birthday cake in lower case. This years theme was "Hello Kitty". We didn't get to carried away. I'm not really a theme mom, however, I will tell you that I LOVE "Hello Kitty". elle agrees. elle received so many wonderful gifts for her birthday. Each one was her favorite!! She loves bubbles and received 2 bubble blowers, an whimsical tea set, her first Cinderella tshirt, more clothing than she has space for, a gross of musical books, a sit and spin and her LEAST favorite...a bicycle helmet. She gave me the stink eye and fought while we put it on her head. If she could talk she would have said "Ma....I look like a fool in this thing!". Trust me, the fact that elle can't talk DOES NOT prevent her from getting her point across loud and clear!! Ask anyone that knows her
Butterfly Kisses
There are certain special things we wait for in our lives. Moments, feelings, milestones, events... first kisses. Yes, first kisses. I have been hoping and praying for 4 years that my daughter would some day be able to say to me..." I love you mommy" , to be able to reach out and give me a hug or to lean to me and give me a kiss. Well...I know first hand that dreams do come true. Elle gave me a first kiss a couple of days ago !!! It was with intent, it was not a reaction and it was all for me...my little butterfly kiss. I was filled with joy over this little person placing her open, wet lil mouth on the side of my face. It was the best kid kiss ever!!! All I have to do is say "kiss?" and she lays one on me. I will say that I certainly took full advantage of that today. I must have gotten 12 kisses. What?...Practice makes permanant :-) This is just another example that elle has the ability to learn and do more. I think we'll work on "hug" next :-)
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