This post is inspired by the comments I got on yesterday's guilt trip. In the wise words of Lisa, "You really shouldn't have to explain Max's story (unless you want to) any more than you should have to explain why he has brown hair."
Lisa got me thinking about a Bill of Rights we, as parents of kids with special needs, are entitled to. I'll start it—please add your "amendments" in comments, and I will put the whole thing together and re-post it. Then we can all print it out, stick it on the fridge and live by it! Or something like that.
A BILL OF RIGHTS FOR PARENTS OF KIDS WITH SPECIAL NEEDS
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our kids are the way they are.
* 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 fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to blast Bruce Springsteen, 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 play aimlessly with our children—not for therapeutic or educational purposes. Just for fun.
* We have a right to insist that our kids are included in activities.
* We have a right to demand that our husbands bear equal responsibility. Or at least change diapers.
* We have a right to wish that sometimes things could be easier.
* We have a right to have yet more Pinot Grigio.
* 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 cheer like crazy in public anytime our children amaze us.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Photo from istock
We also have the right to weep like lunatics when our children amaze and surprise us. For some reason that is my typical response is smiling through tears of joy
ReplyDeleteWe have the right to make rude comments back to people who are ignorant.
ReplyDeleteWe have the right to go through the grieving process & realize we will probably never really leave it, just always be in different stages of it, moving around.
We have the right to never really be "over it". Any of our experiences have made us, shaped us & will always be with us.
We have the right to just love our child for who he/she is.
We have the right to be medicated if need be to get through our days (by medicated I mean antidepressants and/or anti-anxiety meds) & realize it is okay to need help. Also, we have the right to realize we are not alone in needing help or medication.
We have the right to not always have our child be the poster child for his/her disability. We have the right to just somedays be a typical child.
Amen, sister.
ReplyDeleteWe have a right to expect quality services for our children, not just when they're infants, preschoolers, and elementary age, but also in the older grades and when they're adults.
ReplyDeleteAmendment to my previous right: And there should be adequate funding so that there's not a 10 year waiting list for services.
ReplyDeleteLol, I love it. Is it ok if I copy and link to you. Love it!
ReplyDeleteShould I make a Bill of Rights for kids with special needs parents? After all we're all normal, it's the parents that make us different :)
ReplyDeleteOh, I love this post! Here's mine:
ReplyDeleteWe have the right to giggle at anyone who says we're "in denial" about our children's potential.
Gosh Ellen that post is so good and it says everything i feel.Its words like that that keep people going when the going gets tough. Thanks!
ReplyDeleteno admentments here come visit and leave a cooment if u think u would be willing to help with a new prject
ReplyDeleteWe have the right to roll our eyes straight out of our heads when we encourter certain mothers that brag non stop about their child who is the smartest student and best athlete in every sport or focus our eyes to send stink eye at the mothers (ok usually the same mothers) that silently gasp when you mention special education!
ReplyDeleteGreat post! Not feeling super creative at the moment, so I have nothing to contribute. But I love this post and the comments that have been made so far.
ReplyDeleteI LOVE it!!! We have the right to talk about how great our kids really are when people just don't get it.
ReplyDeleteI love your bill of rights, and I also love MeghatronsMom's coment about how we have the right to grieve. We should not feel guilty for wondering "What if..." every so often. We'd be kidding ourselves if we said we didn't do just that, anyway--so why feel guilty about it?
ReplyDeleteWe SHOULD have the right to NOT have to fight, kick & scream, shed tears,nearly commit homicide to get the quality services Galen posted about!
ReplyDeleteThese comments are spot-on!!! Well said, everyone. I have to figure out a way to put these all together in some attractive format and make a printable version. I'll try to get in touch with the blog gods and ask them. Oh, and if anyone knows where to find the blog gods, let me know.
ReplyDeleteWe have a right to believe in the potential of our children. We have a right to choose alternative therapies for our children to improve their quality of life. We have a right to have our decisions understood and respected not criticized and accused of being in denial of our child's condition (we live daily).
ReplyDeleteAmen!
ReplyDelete..and why is Hugh Laurie marked out.. I love Hugh Laurie!
Love it! Except instead of Bruce, I would pick Tom Petty. But I'm right there with you on the Pinot Grigio:)
ReplyDeleteI would just reiterate that, even though it's been four years and my daughters are AWESOME, I still have the right to NOT be "over it", and to have as many bad days as I want/need. I also have the right to be negative on my bad days and not always be "sunshine and roses." I have the right to say, "you just don't get it" to parents of typical kids as much as I want, and they should accept that they just DON'T GET IT!
I could go on and on...
great post Ellen!
Billie
Love it!!!!! I need to print this out and put it on the fridge.
ReplyDeleteI love the Bill of Rights idea and will add a few more when I get my little man down for the night. Its still early in AK:)
ReplyDeleteWe have the right to be mad at God from time to time when we have to watch our children struggle to do the simplest things.
ReplyDeleteWe have the right to express our true feelings without fear of others who have never walked in our shoes scorning us.
I support all the ones you wrote and all the ones everyone contributed here in the comment section. I just sat down and drafted a few more which I'll also post at my blog and send folks here to read the rest. Thanks for this, i needed it today...
ReplyDeleteWe have the right to react to people's ignorance in whatever way we need to in that particular moment knowing our response could be completely different on a different day.
We have the right to be frustrated with our friend who tried to compare bringing her newborn into the pediatrician’s office for a heel prick to watching NICU doctors withdraw spinal fluid from our one pound baby’s brain.
We have the right to tell our family and friends that everything won’t be OK--at least not how they mean it--that he won’t catch up by the time he’s two and he wont be playing football in no time.
We have the right to stop seeing our children’s disabilities because they blend into the very fabric of their beings and we honestly can’t imagine them any other way.
We have the right to bawl on our way back from the playground when all of our child’s challenges become so glaringly obvious in the light of other children running, communicating, and playing with ease.
We have the right to hope for an empty playground so we don’t have to look into another child’s wide eyes and answer the question: “What’s wrong with him?”
We have the right to give our children consequences for their behavior and to not feel guilty by how frustrated and angry they can make us at times—just because they are dubbed “special” doesn’t mean they can’t still be a royal pain in the ass like all children everywhere.
We have the right to expect insurance to pay for alternative therapies, procedures, medicines and treatments-- and without making us continually prove how disabled our children really are.
We have the right to take a break from googling alternative therapies, procedures, medicines, and treatments and to research upcoming live music shows or our favorite breweries new white ale or anything not related to our child’s disabilities
We have a right to stretch the truth to our therapists when we failed to do our homework because we were just too darn tired-- or overwhelmed or involved or busy playing with our kid-- to do all our exercises this week.
We have the right to admit we can’t do it all.
We have the right to feel mad at the world one moment and in awe of its beauty the next.
We have the right to dream of what may be possible.
we have the right to have our children seen for who they are as individuals, not just as labels or diagnoses.
ReplyDeleteI love this post!!! Thank you so much for writing it, and thanks to everyone who has added such insightful comments. Many of Christy's comments really hit home with me, especially the one about telling our family and friends that NO, it is not all going to be ok. So well stated!
ReplyDeleteI am a super proud mommy of preemie twin boys who both have special needs, and I am also a special ed. teacher. I would love to share this with the parents of all of the kids in my class, so they know that they are not alone!
Thanks again for writing this!
I would also like to agree with a previous commenter who asked why having a crush on Hugh Laurie is crossed out????? He's one of my vices!!
i LOVE LOVE LOVE this. LOVE.
ReplyDeleteFor the record, I crossed out Hugh because as much as I adore him and wanted to give him a nod, he is maybe a wee bit off-topic here? :) Given that this blog is a democracy, not a dictatorship, I guess I may have to keep him.
ReplyDeleteI will put these all together soon and post them as one cohesive Bill of Rights!
It can start We, the parents, in order to keep our sanity... LOL
ReplyDeleteWe have the right to not always have to behave as inspirational icons who never complain or acknowledge the sometimes awful realities of raising a special needs child.
ReplyDeleteI've been so surprised by some of the emails I've received since I started blogging about my daughter. Most are very supportive, but I still get some along the lines of "how dare you portray life as a special needs parent as anything other than rainbows and sunshine".
What about the siblings? Big sisters and brothers sometimes help raise and take care of their special sibs too...
ReplyDelete*We sibs have the right to punch ignorant little monsters who call our sibs the 'r' word without getting in trouble for the school suspension...
*We sibs have the right to enjoy our successes completely, without the shadow of comparison that 'the baby will never be able to do that'
I just came accross your blog and I LOVE IT!!!! You put the my thoughts into words perfectly! Thank you!!! I borrowed your top 20reasons and posted them in my blog!!! Thanks
ReplyDeletewe have the right to walk away without guilt from relationships with friends or family members who not only don't GET IT but who show no signs of trying to.
ReplyDeletewe have the right to take our children anywhere and everywhere others take their "typical ones,: even if ours might be louder, messier, and more age-inappropriate...
We have the right to occasionally feel and act superior to the moms who "don't know how we do it."
We have the right to bombard friends, family, teachers, co-workers and even perfect strangers with the results of our never-ending research and experience in the hopes that we will get through to them and one more person will be a little less ignorant and a little more understanding when meeting one of our kids in the future.
We have a right to demand mentors within our community so we don't become overwhelmed by the ever evolving demands.
We have a right to demand mentors within the community for our children so they come into their own seeing functioning, happy, whole adults who look and act like they do as models.
You have a right to stick up for your children when people talk about them like they're not even there (sometimes people talk about me right in front of me I wish my mom would say "she's right here please don't talk about her TALK TO her" because although I can speak clearly I'm too polite to say anything especially to people who are older than me).
ReplyDeletetotally right about the husband one does yours do nothing too?
ReplyDeleteWe have the right to hassle free insurance.(i wish)
Amendment: We have the right to use arcane techniques like write down answers for them, (writing only, no giving them the answer),ask teachers to shorten or lengthen assignments, or asking to excuse the assignment altogether.
ReplyDelete