A Bill of Rights For Parents of Kids with Special Needs

Written by Ellen S.
Ellen can be found at To The Max.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure 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 child’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.

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

She actually likes this game

Don't ask me why he starts calling her Roosevelt....or Rosy -

Fish Out of Water

After three years we have found out we are raising fish - out of water. She loves it, loves it, loves it. If only you could see the great big smile on her face in the videos. She is in her happy place!

I think our goals to teach Ivey to anticipate events about to happen to her are pretty much shot while at the pool. Her goal is to expect virtually anything .......especially when her brothers are involved.

Video of Walker dunking Ivey coming soon --

My Great Dad -

One Princess Ivey

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Two Brothers

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One Nephew

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One Gran-Gran with his hands full.

I may be a hippie after all

Maybe I should have titled this "So YOU think it's a luxury do you? Just try being Ivey for a day - buddy!!

Okay - I've been on this soapbox before but this time I am seriously aiming to do something about it. My hubby thinks I may 'have a point' but that thus is the ways of the world. Maybe so, maybe so, but get ready because when I get on my box, oh boy.

So here is my plan - do I have any takers before I get started??

I need volunteers. Good ones. Ones who don't mind showing off their disABILITIES. Basically blatantly obvious. I mean that with utmost respect remember my daughter is blatantly obvious.

Anyone willing to become a hippie with me will work just fine. We are going to silently protest --

Now I know it is sufficatingly hot in Georgia right now, but all the better because we have some doozies out there to rattle and shake. We need to attack on a hot miserable day to better prove our point.

Here's what we are going to do. We are going to get someone to drop us off at our favorite places in town, whether it be a restaurant, hospital, Wal-Mart, K-Mart, TJ Max, or Barnes and Noble.

Ivey and I get dibs on that one spot in front of Harvest Moon.

We are going to stand or sit out there in this darned Georgia humidity in our wheelchairs (Ivey will) in front of the closest 'handicapped' parking space. Not saying a word, just parked on the sidewalk in front of the spot, and see if those people with the little hangy 'handicap sign' that looms from the rear view mirror - who had an injury at some point - still have have the gumption to turn into that designated spot.

Trust me on this restaurant one - I've seen the same couple eat in there multiple times who have parked in that lone spot out front - it's not heart issues or their diet would be different.

I also call dibs on a spot in front of the hospital. I think a whole group of us should sit up there in front of those spots.

Let's just sit out there and make them think. "On a hot day like today, could someone else have better use of this space?" If they are 'handicapped', you would think they would use those special spaces more wisely.

I know I do. Every single time I drive my car I could pull in one of those specially marked spots, even if Ivey was not in the car. My car has a tag, so the fines would not matter because legally - I'm covered. Seriously, have you ever seen a police officer question anyones parking? My conscience would kill me.

But you better bet that even today if Ivey is not in my car, I park further away from the store. I still walk from the back of the parking lot because I know that those handicapped spots are taken and someone whether in a wheelchair or elderly needs a spot up closer to that store. I am NOT a parking lot stalker!!!!

When Ivey is with us, we park there in those special spots. My daughter is a three year old mentally challenged blind girl who cannot walk. Her three year old counterparts are running around. Sometimes she needs her wheelchair other times I would love for her to try to walk to where we are going. But she can't do it from a block away, not YET. No, she has not 'earned' that spot but it does make a small portion of her life easier.

And trust me on this one, she would rather not be the one needing that space - EVER.

So why do so many people think it a L.U.X.U.R.Y?

It's not people.

So who is with me? Seriously. Any one want to be a hippie with me?

Do You Believe Me Now?

This was sent to me via email. I couldn't resist sharing it. Thank you Kathy -

During Jimmy Wayne's free concert at the Country Music Hall of Fame he called a girl up to the stage whose father won a trip to Nashville to meet Jimmy Wayne at the event. It seems she told Wayne that she could sing when they met backstage earlier so he wanted to put her on the spot and give her the opportunity of a lifetime. He brings her up, introduces her to everyone and acts like she's a huge celebrity about to start her own concert.

Click here - It's worth the time => Do you believe me now?

Guilt 101

I often wonder if the guilt of Ivey's differences will ever truly go away. No matter what, they have a way of looming and making themselves present even in the best of situations. Last week I spent the best four days at the beach with my boys. With a lot of love and help from my parents and aunt and uncle and a lot of love and encouragement from my awesome husband, the boys and I headed to the beach to just be. In other words, we went while Matt and Ivey stayed here. Our intentions were to give the boys some much needed time to be boys – with no grueling schedule – no 'wait a minutes' – no 'let me get the feeding pump' – not even a bedtime. And that is just what they did- and more. They got to be themselves, come first for a change and have their mama uninterrupted. In the meantime, Ms. Ivey got her Daddy to herself for the first time ever. I know they had their own fun, a lot of snuggling and even time at the pool together. Needless to say, everyone got a little of the attention that they have needed for a long time.

Also needless to say, the guilt of leaving Ivey behind was nagging. Knowing that we left to take a break from a schedule that she can never leave behind, that she is always bound to, just somehow does not seem fair. No matter how normal our 'new normal' is to our family, the boys still need time to be 'normal'. They need the opportunity to also know a life without so many barriers and regimens. Ivey needs time to have her dad to herself too, to know him without the distractions of her brothers who want and demand his undivided attention as soon as he walks in the door each day. So at some point I wondered if it were 'fair' to be having such a fun time without the other half of our family. I guess that leads us back to the constant battle of equality for all three of our children. It was a great reminder for me that the boys need me just as much as Ivey does, maybe even more at times.

We had a great time– lots of trips daily to and from the beach – easy trips lugging sand buckets, toys and towels-always covered in sand. I had forgotten, because it has been so long, how easy it is to do such simple tasks when your children can walk -how easy it is when they can feed themselves - when they do not need you to literally touch them constantly to be connected to an awesome world - to be able to speak and be heard - to be spoken to and hear. Not that all things are hard all the time, but it was so easy. Then up came the guilt again. Ivey's life requires her to work so much harder than the rest of us to do simple tasks. Walking to the beach, sitting in the sand, seeing the ocean, building that sandcastle, pointing at her surroundings, hearing the ocean for what it truly is….looking at the dolphins between the sandbars at sunrise – I know, it was a very special trip with very special memories of the boys, and we did enjoy every single second together and I will tell them over and over about our special time, the ride in the car, how spotting dolphins is good luck, about eating starcrunches for breakfast and finding those seashells–not a moment was diverted from their time, but at night when it got quite, I couldn't help but think about life's complications and wonders...how they bind themselves together. And I wonder, is that normal for our type of family? Or are those guilty moments just something that I create for myself to worry about?

Very Interesting.....Hmmm?

I'll let you look for yourselves.....Let me know what you think.
This was passed on from MAPS. Oh, and don't forget to vote for him.

http://www.moderndogmagazine.com/photocontest/dogs/09/06/04/riddle

The Big Transition

The big transition is final. Of course you have no idea what I am talking about, but let’s just say after several months of worrying it’s a done deal. It’s one of those things that you hear other parents talk about, stress about and complain about…it seems that it never works out to their liking (for the most part), or it is just downright brutal and a fight.

That’s what happens with other people. Not Ivey.

Ivey’s first IEP is official. She transitioned out of Babies Can’t Wait, thank you Ms. Becky, and merged into the Floyd County School System with a perfect landing.

If you are unfamiliar with IEP’s – go here:
www.parenttoparentofga.org/roadmap/education/educationplacement.htm

Transition is a tough process. Trust me on this one; we have done a lot of transitioning in the past three years. When Babies Can’t Wait came into our home after Ivey’s birth – there was some serious transitioning. To start with, I sat in a room full of very caring people who asked questions, gave information and evaluated my baby girl. Overwhelming doesn’t even begin to cover it. And when all was said and done the obvious was stated…she was blind, hearing impaired, could not eat, was physically challenged, and mentally challenged. The hardest part of that initial meeting was having them ‘grade’ her and compare her to some ‘standard’ for ‘normal’ children. All I remember was me wanting them to leave.

Over the three years with Babies Can’t Wait, those same women who sat in the floor of Ivey’s room that day became my friends, our family’s support and Ivey’s strongest advocates. They got the bird’s eye view of our home from inside the walls. They have witnessed many of Ivey’s truly amazing feats because they are partly responsible for her success in this world. They have cheered her on as active participants, not just the easy seats on the sidelines. Some of them even got to see me every week first thing in the morning with bed head and no coffee. So I want to thank everyone who has touched Ivey’s life through Babies Can’t Wait. You are all special angels helping special little people!

As for the new Transition in our school system, it was not quite as traumatic as the first. I know Ivey and her strengths as well as her weaknesses. A score on a piece of paper means nothing to me now. Oh, it still bares a sting, but not the punch it used to. It is what it is and must be done as part of the process. The members of the school’s transitioning team saw through those numbers too.

I can’t wait to see how Ivey blossoms this next year. Floyd County has done an excellent job to ensure a smooth transition with Ivey. So this next year Ivey is set. She will still be at First Baptist and she will attend McHenry. She will get the best of both worlds. She will have two great people working with her in class (whom I can’t wait to work with), alongside her teachers. She will be working on signing and Braille with vision and hearing teachers, there will be a little OT, PT and SLP – along with other whistles and bells. Looks like a good year for Ivey!

So thank you to everyone in Babies Can’t Wait – you did an excellent job preparing Ivey for this day. Thank you to everyone we have worked with in the Floyd County system, especially Juli, this has been such a good and exciting time for us – I can’t begin to tell you how worried we were in the beginning. And a very special thank you to Ms. Lynn, I could not have gotten through this without you!!! You are an exceptional person.

You know Ivey has really taught me so much over the past few years. I feel like I walk around in a world of metaphors. This new transition I am sure will teach me so much, but I do hope that it will still be a learning experience for us all. To be so small, Ivey has so many life lessons to teach. She truly is a miracle, and whatever her true purpose of this Earth is, I am certain that God knew just what he was doing when he put her here in our lives, and now in your lives. When you were all in my home I hope you noticed that I like butterflies. Butterflies remind me of Ivey and the quote that says, “There is nothing in a caterpillar that says it will become a butterfly.” Ivey is much like that caterpillar – we don’t know her future and there is nothing spelled out saying what that future will be, but in only a few short years she has developed into a beautiful little girl with so much potential. Potential that was not quite so evident at first. Now you have the opportunity to cultivate that potential.

How wonderful is that?

Ms. Mary working with Ivey. Ivey loves this crazy thing on her head. Honestly, Ivey really likes the craziest textures. Ms. Mary will work with Ivey at FBPS next year.

Maybe now I can get back to blogging....Got some great stuff...