Wednesday, 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.

For a printable copy, e-mail LoveThatMax@gmail.com.

57 comments:

  1. Thank you. When I read it I feel validated. New to this journey little one is 20 months.

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  2. Love it! Every special needs parent should have a copy. Thanks for putting this together!

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  3. Thank you for doing this. I agree with every single item on that list. I think I'll print it out for my fridge!

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  4. That was amazing - and I so need that right now. Thank you, thank you, thank you.

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  5. That about sums it up! What a great reminder to us for those days when we need a little pick-me-up!

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  6. Hooray! Going to need to get a copy for the fridge.

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  7. That was wonderful! Thanks Ellen! I did feel a little bad having made a bit of a "snide" contribution. However, I now love reading it and seeing it included. (I also love this anonymous thing, I wish I could be anonymous more often really.)

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  8. WOW! That is great! I love seeing it all together. So freakin' cool! Yes, I would love a printable copy. MeghatronsMom (at) yahoo (dot) com

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  9. You will never know how perfect your timing is. I read this just when I needed to read it. Truly. Thank you for putting that together. You rock. I'm going to email you to get a copy and ask for your permission to put this on my CaringBridge.
    Did I mention how great the timing was?
    :-)

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  10. Ellen (and all contributors!) this is such an amazing compilation of feelings and truths. I have read it multiple times and agree with every single one. For the moment, my favorite one is:
    * We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

    Somewhat related, both my husband and I are sick and tired of people telling us how proud they are of us... I hope that feeling goes away :)

    Thanks so much for this, I will surely be in a highly visible place for all to see.

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  11. Love this, still going to post it and credit you. Just been so busy.

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  12. I love it what a great list. Can you please e-mail it to me at busylizzymom@yahoo.com.

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  13. Thank you Ellen! I've never before seen in one place all the feelings I have about being the parent of a child with special needs. At a time when I feel very isolated & alone, this list has helped me feel part of an understanding group. Thank you.

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  14. I'm glad you wrote and shared this. I'll think of it every time I'm confronted with weariness, lack of empathy, ignorance or apathy from the world. It's an inspiration. Thank you. David

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  15. I LOVE this! I was nodding my head at so many of these! Do you mind if I share on my blog?

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  16. I love this list!!!! It's so perfect!

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  17. Fantastic! So well written!

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  18. WOW! I hope it is pk to post this on my blog for my readers/family to read. You did an awesome job capturing so much of what I feel. Thank you!!

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  19. Loved this--thank you for posting! I'm posting it on my blog (and linking back to your original post to credit your creativity and honesty). Lots of it applies to our "standard issue" son, as well. Thanks so much!

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  20. Amen, sister, amen.
    Awesome post!

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  21. Thank you for this. I just shared this on Examiner and suggested your blog to other special needs parents. Your blog is one of the best special needs parenting blogs out there. Thank you.

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  22. I like this. Thanks! I am going to pass on to others.

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  23. Definitely the best thing I have read for a long time.

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  24. This is really really awesome. I am so stealing it-- but I will link back to your blog. ;)

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  25. I just read it from Christine's Blog and came on over for a visit. :)

    We have a son Tim, who had a stroke at 16 days, due to prematurity. Though his outlook at birth was quite negative, and they told us he would never do anything. He is now a high school teacher. He just walks a little different. :)
    We a few more sn kiddos, and yes, we live a FULL and Wonderful Life. :)

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  26. We parents of special needs kids have our hearts summed up in your post. Thank you. It made me cry and remember I am not alone in this.

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  27. Thank you so much! I am linking a special post on my blog just for your "Bill."

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  28. Hi there,
    I feel so good reading your words about parents rights. I am a mother of 3 children who have a diagnosis of autism, out of them the eldest who's 15 is in a care fecility as we couldnt handle him. My daughter who's 7 has sinificant behavioural challenges and gets aggrisive.
    I have gone down this road of self isolation and guilt so many times, because of people around me, who have no idea about what it means to raise an autistic child and who are so quick to judge things from the outside. I am so sick and tired of being questioned and being checked out by the child protection agency only to be told that it's just a routine thing we have to do because of some anonymous caller calling about concerns they have for my child's safety. I know that I am doing the best for my children. They have all the services and supports in place in school and I have actually had the children's protection agency involved with our family for a good no. of years. Infact they have very closely worked with our family and know us well. Yet from time to time they keep wanting to come to my house when some outsider or stranger may see me struggling with my autistic daughter out in the community or even just when I'm outside our house, in the neighbourhood, I get a call that somebody repoted me. This has become a cycle with this agency who know everything, and yet they continue to do these investigations on us, disrupting our privacy and our peace of mind in an already difficult situation.
    I'd like to know where do I go and what are my rights as a parent of these special needs children ? Please direct me. Thankyou.

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  29. Anonymous, that is a tough situation, to be sure. I think you should see if you can find a local chapter of The Autism Society of America, or a similar group if you are abroad (I'm noting your spelling of "neighbourhood"). There might be a social worker affiliated with the group who can offer guidance.

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  30. I love this! Thanks for posting. It was actually sent to me by a friend who has been reading your blog for a while. It was so nice to see you have such a wide readership. Hope all is well.
    Jana

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  31. My kids aren't special needs (as far as I know yet), but this is great! Having worked with developmentally disabled adults for years, I wish their parents had resources like your blog and bill of rights. Way to go mama!!

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  32. the things you wrote reminded me of how lucky i am to have Owen(diagnosed with autism ..one of four boys in my family with that diagnosis. my sister had two boys both autistic and my cousin has a boy with aspergers) even though every day with him is a challenge and every day I feel at some point like I am being a horrible mum .... I am doing ok. we are doing ok. He amazes me all the time and has come so far from where he was only 2 years ago. he is intelligent, loving, loves people books cars. I wouldn't change him for the worl even his autism and i know that sounds odd but it is part of him ...it makes him who he is and even with all the challenges he faces in his life he will face them head on and I can't wait to see him do it. thank you thank you for reminding me i am doing ok and i am a good mum.

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  33. Just saw your tweet about this and OMG. You're my hero for finding a way to put this stuff into words. I'm not only going to retweet it, but bookmark it so I can come back & read it again when I need to. And I think I'll print it out and take it to our first IEP (we're just transitioning out of IFSPs).

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  34. whats up everyone


    Just saying hello while I read through the posts


    hopefully this is just what im looking for, looks like i have a lot to read.

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  35. I just read this today in a magazine at the school where I work...

    When I got home, a friend of mine gave me an award for my blog - so I'm passing it along to you if you would like to share it also :-)


    I love reading your blog and wanted to let you know that I am awarding you with the Lovely Blog Award.

    The fun rules for recipients:
    1. Put the One Lovely Blog award logo on your blog and/or in a new post.
    2. In a new post, share 3 things you think are lovely
    3. Pass the award on to 3 fellow bloggers.
    4. Link the nominees within your post.
    5. Let the nominees know they have received the award by commenting on their blogs.
    6. Share the love and link to the person whom you received the award.

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  36. I love this!! Is there a way I can share it on my food blog? I will definitely give you credit, but I know people who should read this! My middle daughter has cerebral palsy and all of this is very perfect to describe how I feel most of the time. Thank you so much for sharing!

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  37. Awesome....Bill of Rights.....love it and thank you ...hope it's okay for me to share this with families in New Zealand...every family needs a copy to refer to, especially on the rough days!!!!

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  38. i loved this! the only thing i personally would add, is that i also have the right to tell family when they are also being stupid as well...!! no one gets it...unless they walk in the shoes!

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  39. Wow.,. I feel better now that I read these right. Now I know I'm not the only one who feels this way. Thanks you so much.

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  40. when I'm having a bad day (like today, when I know how much my son was struggling although he 'seemed' fine) I stop here and reread this.

    thank you.

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  41. I have a friend with a special needs child, and this is great for helping me understand how to best be her friend.

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  42. That was fabulous and uplifting. My son is 2 and, although it's an ongoing struggle, he is improving each and every day! I'm so proud of his accomplishments...and...one more article to the Bill...We have the right to be proud of the "little things!"

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Thanks for sharing!



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