Archive for March, 2011

Celebrating the Typical

When you have a child with disabilities, usually their milestone chart goes at its own pace.  A lot of times the milestones look quite a bit different than they do for a typical, non-disabled child.  Often, the chart has completely different milestones on it altogether.

But the milestone chart is the same in that each milestone is celebrated.  And the truth of the matter is, when your child with disabilities reaches a milestone, the celebration is that much sweeter because of the amount of time, effort, practice, and work it took for your child to succeed at the task.

Chloe achieved a milestone yesterday.  I don’t think I’ve ever seen anything like it listed on any of those “Your baby should be doing these things at this age” charts, but it is such a typical little kid thing to do that I celebrated it.  Most kids do it when they are toddlers probably; I’m not even sure.  But I cracked up yesterday when Chloe did it for the first time.

We were in the van, and Chloe said, “Hi!” or at least made one of her getting Mom’s attention sounds.  In the van, if Chloe vocalizes anything she is either singing along to the radio or she’s talking to Mom.  Since we were stopped at a red light, I turned around to see what she needed.  I was surprised to see that she wasn’t looking at me like she does when she needs to tell me something.  Instead, she was turned looking out the window.

And then she did it again.  She said, “Hi!” . . .  And she waved.  She was waving to the lady in the car next us!  She greeted a stranger in the car next to us!  She said, “Hi!” and waved!!  And the lady next to us had her window down and was waving back at Chloe and smiling this huge happy smile at my girl.

And there it was.  A very typical moment for my not-so-typical girl . . . several years late according to the typical-kid calendars.  And I celebrated it!  I was so joyful and excited and proud of Chloe!

The woman in the car next to us couldn’t have known that she was part of such a huge moment.  Probably she had waved at other young kids in other cars.  And I’m positive that she’s forgotten all about Chloe by now.

But I will remember this event for a very long time.  It’s an amazingly typical thing that kids do.  But I laughed and smiled and was genuinely grateful to the lady in the car next to us for playing her part in this milestone for Chloe.

And this experience is also another reminder to me of the impact that we have on other people’s lives everyday — even when we don’t know it.  The lady in the other car probably thought nothing about waving at the little blonde girl next to her.  But she impacted Chloe and me forever.

And who knows . . .  maybe that lady does remember Chloe.  It is possible that Chloe’s greeting and “smile” was exactly what that stranger needed yesterday.  Maybe Chloe blessed that lady.

We’ll never know.  But it sure gives me a reason to wear a smile on my face — even when I’m driving in traffic!

Mama in Denial

I sat in the car stunned . . . nearly paralyzed.  I was feeling close to a panic attack.  I was scared and couldn’t speak.  My legs wouldn’t move.

But Elliot was sitting next to me.  I couldn’t let him know how scared I was.  I knew he was probably a little taken aback, too.  I had to pull it together and be a brave mama.

Breathe.  Breathe again.  Gather supplies.  Force feet to the ground.  And plaster a confident-looking smile upon my face.  “I’ll be right back!” I called to my three kids who waited and watched, silently wishing me luck as I turned and walked to the building.

“I can do this,” I reminded myself as I forced one foot in front of the other.  I tried not to stare.  I tried not to gasp when I heard curse words coming from the little groups of people formed all over the lawn.  These kids were huge!  And Elliot would be a student here in only 5 short months!

I was at the junior high school, and I was dropping off Elliot’s application for intra-district transfer.  He has decided that he wants to be a part of our district’s IBI (International Business Initiative) / IB (International Baccalaureate) languages program next year.  He wants to learn Mandarin Chinese starting next year (7th grade) and continue on the district’s Pre-AP / Pre-IB program.  The process includes an application in which he had to write a few paragraphs explaining why he’s interested in the program, as well as his current grades and test performance.

I walked through crowds of huge and rough-looking teenagers.  I realized I was holding my breath.  I reminded myself to breathe, and continued toward the building.  I finally made it to the front door and made my way inside.

Once inside the building, the quiet of the nearly empty building settled my nerves and emotions a little bit.  The school is very nice inside.  The office is quite orderly and inviting.  A lovely woman greeted me with an excited smile.  I told her why I was there, and her excitement grew.  I had a great conversation with her.  She bragged on my kid even though she knew nothing about him.  She went on and on about what a great program he was enrolling in and about what a fun time he would have there.  She would be working with the summer program that Elliot was also planning to attend.  Our conversation and her kind words were like a hug around the neck to this suddenly overwhelmed mama of a nearly junior high kid.

I walked back outside with a new confidence and a new peace about this next step for Elliot.  While the kids on the lawn still looked huge compared to my little 11-year-old son sitting anxiously in the car, they looked more like kids this time.  And I smiled at them.

I sat back in the car and gave Elliot the report.  I told him what a good visit it was.  I told him about the nice lady.  I told him the nice things she said about the program and the nice things she had said about him.  I told him how nice the building was inside and how nice the office was.

He, too, was relieved that I had had such a good visit.  We both felt like maybe junior high wouldn’t be too bad . . . we were both convinced that it was a nice place and that it was the right place for him.

“I’m glad you such a positive visit,” he said and meant it.

At the dinner table that night, Elliot again expressed his happiness at my good visit at the junior high school.

“Did it just sorta calm your nerves a little bit to have such a good experience there?” he asked me.

Yes, it did.  And it calmed his little nerves, too.

Oh, boy!  We have some new experiences to come, for sure!

“I Love You”

Just this week Chloe came and sat on my lap.  She wasn’t really interested in cuddling or really even in sitting with me.  I was sitting at the computer, and she wanted a computer turn.  But I turned the computer chair around and hugged her tight and began to cover her face and neck with sweet kisses.  As she let herself enjoy the affection, I swear I heard her say, “I love you!

I stopped, looked at her, and asked, “What did you say?”

But the moment was gone.  She was back to talking about the computer and which youtube video she wanted to see.

But I’m claiming it.  Because I’m nearly absolutely positive she said the words.

Chloe told me she loved me.

<happy face!>


Inclusion Works 5

My first vlog!  Be sure to tell me what you think!

Inclusion Works Conference 2011, Austin, Texas.

The Least Dangerous Assumption:

Outing the Prejudice: Making the least dangerous assumption
By Zach Rossetti and Carol Tashie

People with disabilities are people first. Because of the presence of a disability, a person may act, get around, look, dance, smile, read, learn, show what she knows, or communicate differently. The key here is that this is a difference and not a deficiency. As humans, we are all alike only in that we are all different. The fact that society tends to create a hierarchy of these differences, by labeling some of them deficiencies, is a manifestation of an out-dated paradigm plagued by prejudice. This inherent prejudice against people with disabilities means that some differences will be defined as deficiencies and looked down upon by all of those “higher up” on the social ladder.

What makes this even worse is that most people do not even recognize this prejudice. It is disguised as compassion and justified as “help.” The segregation of people with disabilities into “special” classrooms and separate lives is justified by this paradigm of deficiency. Too many people continue to believe that, “since they do not look or act like us, they must not be as good as us.” This way of thinking needs to be outed, challenged, and changed in order for all people to be valued just as they are.

Anne Donnellan, in her book Movement Differences and Diversity in Autism- Mental Retardation: Appreciations and Accommodations People With Communications and Behavior Challenges (1994), identified why this old paradigm was not sufficient and needs to be replaced by a more humanistic and respectful one. The key to the new paradigm is the concept of the “Least Dangerous Assumption.”

“Least dangerous assumption” states that in the absence of absolute evidence, it is essential to make the assumption that, if proven to be false, would be least dangerous to the individual. She continues by explaining that the “absence of evidence can never be absolute evidence of absence,” and as such, it is always safest and most respectful to make the “least dangerous assumption.”

Consider it this way. If I were to go fishing for a week and not catch anyfish, there would be two assumptions that could be made. First, I could say “there are no fish in the lake since I did not catch any, and I know what I am doing.” Or, second, I could say simply that “I did not catch any fish that week, and I will keep on trying.” The first assumption seems rather arrogant, while the second one is more realistic and respectful. (There is a third assumption that I could make which would be that I am not a good fisherman, but we won’t go there).The same holds true for students with disabilities. Imagine a child who does not talk with the spoken word and moves around using a wheelchair. Her teachers have worked with her for a month and have not yet seen any evidence of what she understands. In fact, they wonder if she knows or is aware of anything at all. These teachers can make one of two assumptions. They can assume that “what you see is what you get” and that this child does not know anything, that her brain is as empty as that lake. As such, they can educate her in a way that reflects those assumptions (perhaps segregated classes or regular classes with low or no expectations). Now imagine her as she graduates and uses a communication device to say, “Why did you treat me so poorly?”. I am smart and you wasted twelve years of my life!” A very dangerous assumption was made, with results that none of us would desire.

Now, consider the second assumption. These same teachers can recognize that her movement differences are differences and not deficiencies. They can assume that she knows lots and just isn’t currently able to show what she knows. Her brain is as full of knowledge and potential as that lake is of fish, but they just have not been able to reel anything in yet. As such, her schooling would reflect these high expectations and she would be considered and respected as a valued member of her school and classes. Now again, imagine her twelve years later at graduation, using her communication device to say, “Thank you from the bottom of my heart to all of my teachers who believed in me and made me feel as if I truly belonged and treated me like all of my classmates.” This is the least dangerous assumption, one that results in a young woman who can celebrate her full and fulfilling life.

But consider a third scenario as well. What if we never come up with a way for this young woman to communicate her intelligence? What if, after twelve years as a valued and respected student in all general education classes, we still do not know exactly what she has learned and knows? What harm was done? What was lost? Nothing. And that truly is the least dangerous assumption.

Understanding the concept of “least dangerous assumption” and acting on it are two different things. The idea of considering all people as capable and intelligent may not come naturally to some people due to the influence of society’s prejudices against people with disabilities. Most well intentioned adults and professionals have been taught to believe in the out-dated paradigm and, therefore, may make very dangerous assumptions about students with disabilities. Many people’s first impressions of people with disabilities are tainted by years of societal prejudice and media portrayals of what is enviable and worthwhile. While the power of these experiences is strong, we can no longer allow this to serve as a justification for the perpetuation of the prejudices against students or adults with disabilities.

The question we should all be asking ourselves is: “Do you really believe that the individual with disabilities is a valued and competent and unique person?” Think long and hard about that question. If you cannot honestly answer “yes,” then the next question is simply, “Why?” Think about your beliefs, your experiences, and the prejudice you have

been taught. Ask yourself how you can change those dangerous assumptions and mindsets. Talk with people who are friends, parents, siblings, lovers, and colleagues of people with disabilities. Listen to people who have been segregated or devalued because of the way they look or move or communicate. Learn everything you can about the many ways people communicate and get around and show us who they are and what they know. Introduce yourself to people who had labels of mental retardation while in school, who now are able to communicate their thoughts and feelings and tell us all, loud and clear, “I am intelligent!” Recognize your prejudices and work through them. It will not be as difficult as it first seems. And you will never again make assumptions about people that result in the loss of opportunity, experience, or respect.

All people are people first. Everyone belongs to this wonderful life. No one should have to conform to someone else’s standards before they are told that they are “good.” We all belong. We all have strengths and weaknesses and our own individual potential to be great people and to live the lives we want. We can all lead happy and fulfilling lives, supported by those around us to be successful adults. It is up to all of us to examine our own core beliefs and to spread the word of the least dangerous assumption. We can no longer allow the justification of a prejudice that is so dangerous. Now is definitely the time to believe that all people are valued individuals with limitless potential. Keep on fishing – the lake is overflowing!!!!

Rossetti, Z. & Tashie, C.

University of New Hampshire
Institute on Disability

10 Ferry Street, #14

Concord. NH 03301

The Car Seat

I have been remiss . . . I have withheld info from you because of my own laziness!

. . . I was very excited to receive it!  I’ve been looking forward to sharing the news with you!  I took photos of it, but could never remember to get the photos off of the camera and on to my computer.

What is it??  It’s Chloe’s car seat!

We have waited on this car seat for a long time. We were hoping Medicaid would pay for it, remember?  The process was ridiculously slow.  We had to write several letters of medical necessity.  The doctors had to respond and approve.  The therapists had to respond and approve.  It had to be approved through our private insurance.  And then it had to be approved by Medicaid.

The end result is that Chloe got her new car seat!  She actually has a car seat that is big enough for her and one that she is safe to ride in.  We love it.  And, yes, Medicaid paid for it!

These photos are from the day the car seat was delivered.  The man from the durable medical equipment company delivered and installed the seat.  I think he thought I was a weirdo for taking photos, and I assured him that I would not show him in any of the photos . . . .   Also shortly after this, Paul figured out how to recline the seat a little bit so now Chloe doesn’t have to sit as straight up as she is in these photos.

Thanks again to SafeKids, USA for giving us the interim car seat we were using.  And thanks to Medicaid and Aetna for Chloe’s new car seat.

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The Bed Tent Saga, Cont’d

As most of you know, our family has been involved in quite a long bed tent saga over the past few years.  I wanted to give you a quick update.

I wrote a pretty negative reveiw of the Nickel Bed Tent when we first received it.  While I still maintain the surprisingly shoddy quality of the tent, I must report that the tent is doing its job.

The first week that we had the tent, Chloe got out of the tent numerous times.  Each night we tried something new and creative, trying to keep her in it.  Finally Paul discovered the trick that has been working now for about 3 weeks.  Twist ties!  You know those twisty ties that keep a loaf of bread closed up tightly?  Well, they also keep a little girl closed up tightly!  But as my friend Maranda pointed out, the trick is to put the twisty ties through the little holes of the zipper itself, not the zipper pulls.  When we used the twisty ties on the zipper pulls, little Miss Houdini was able to separate the zippers just enough to get her skinny little Houdini fingers through the hole to untwist the twisty ties!

Anyway, the Nickel is working very well for us right now.  I’m hoping the thing lasts a whole lot longer than I expect it to.  It has surprised me already!

I wanted to post here, too, an email I got from a mom about their Nickel Bed Tent.  She ordered hers shortly after we ordered ours.  Right from the start, she loved the tent and what it did for their family.  Here’s what she had to say:

HI Kelly! I received the tent last Thursday & I LOVE IT!!!! My daughter is safe & is no longer cramped in a crib.YAYYYYYYYYY  It is very, very, very well made & secures to the bed frame nicely. It was easy to assemble, and I am so pleased that I found this product. It is a fairly inexpensive solution, to a commom issue that some special needs parents face. Great product!!!!!!!!!!!!!!!!!

Another friend has mixed feelings about the tent, too.  She, like me, has been disappointed in the poor quality of the tent, but so far theirs is keeping their little escapee inside, too!  Here’s one of her complaints:

I’m not at all happy with the quality of the tent.  Last night when we put him to bed, the zipper on the side against the wall had just popped open.  It was not unzipped…it just popped apart and left a big gaping hole.  We were able to close it back up, but what if he pops it open in the middle of the night?

I would honestly like to return it, but I feel like we don’t have any other option.  You want to go into business together and make a better one? Haha.

Anyone else have a story or opinion or idea to add to our saga?  Let’s hear it!

Meanwhile, let’s all keep our fingers crossed that these tents hold up and keep our angels contained for a long time!!  🙂

Lions, and Tigers, and Bears

This past Saturday, Paul ran a 50K race in Waco, TX.  Yes, I said 50K.  I know — crazy, right?  Well, I, of course, would’ve run the little race with him except someone needed to watch the children, right??!!

Well, since the 50K race was going to take him 6 or 7 or more hours to run, the kids and I had lots of time to have some fun.  We headed to Cameron Park Zoo.

Paul and I lived in Waco when we were in college, and again after we were married we lived there for several years.  We both really enjoy Waco.  I remembered liking the little zoo there, and Saturday I was not disappointed.  It is a great zoo!

The weather was great.  Although by the end of the day the sun was quite hot — nearly too hot for Zippy.  But he held it together and did a great job.  The zoo did a great job of building in a lot of shade throughout.

There were a couple of playgrounds at the zoo.  That was a nice break for Zachary.  There was one place in the otter habitat that had a see-through slide that went under the water.  And the sitting area for the adults watching the children was shaded and included some white wooden rocking chairs.  It was a great spot!

Chloe was in her wheelchair for much of the day, but she got up and walked around nearly everytime we stopped to see animals.  Every animal we spotted — no matter how big or how small — she would cup her tiny hands together and say, “Hold.  Hold,”  wanting to hold every one of them!  Funny girl!  She had a ball.

Zachary did a great job (although not perfect) of staying with us throughout the day.  I was proud of how well he did with all of the walking, the hot sunshine, and the lack of snacks.  He had a great day!

Elliot was a delight and was a big helper, encouraging his brother and sister at different times.  He loved reading about the animals that we saw.  Funny to watch kids enjoy the zoo at such different levels.  Cameron Park Zoo in Waco is now his favorite — the perfect size and not too crowded.

All four of us cracked up laughing at the squirrel monkeys.  They were so funny and so ornery.  That’s the cage that Zach decided he would choose to live in if he had to live at the zoo.



The animals were pretty active this day.  I got good video of the tortoise (not sure I had ever seen one move before!) and of one of the elephants.  Paul will put the videos on Chloe’s ipod, and she will love watching them over and over and over and over.

I also got video of the boys coming down the slide.  Chloe doesn’t like going down slides — the excitement makes her cry.  But she has learned to enjoy watching other people slide.  I’m sure that those videos are ones she will watch over and over also.

At the risk of boring you all, I am posting those videos here — so you know what Chloe’s watching!  🙂

We were all exhausted and hot and thirsty at the end of our day at the zoo.  But I’m guessing our level of exhaustion and heat and thirst would not compare to what Paul was feeling as he finished his 50K.

We made it to the finish line about 30 minutes before Paul crossed it — slow poke.  (Just kidding, honey.  I haven’t run cumulative 50K in all my 41 years!!)  Elliot ran the last half mile or so with Paul, and Zippy jumped in and crossed the finish line with him.  We were all so proud of him!

It was a great, great day and a fun way to kick off our spring break week!

Beaten Down

Unfortunately that’s how I think Zachary feels about school.  He keeps on keeping on, but he is run down and discouraged — just plain beaten down.  And I’m right there with him!

This has been a really tough year for him.  While he has always struggled academically, he has remained positive and mostly confident and has always loved school.  But this year has changed him.

He has had several very discouraging, very damaging experiences this year that I am praying he will be able to recover from . . . but I’m not convinced that he will ever fully recover from.

The biggest and worst experience occurred several months ago, but it has been too tender for me to put here.

In our district, throughout the year, the students take several practice TAKS tests, or mock TAKS tests.  The TAKS test is the looming state achievement test of Texas.  It is practically a cuss word in our house.  The test has darn-near destroyed my son and our family at times.  It is a really big deal.

Each time the students take these practice tests during the year, the teachers construct these bar graphs, displaying the grades of all the students in the class — no names are included, but, of course, the students all know who made what grade.  There is often comparison across the grade level on campus and even comparison by grade level across the district.

I have never been comfortable with their posting these grades for the whole class to see.  I remember several times Elliot made the highest grade in the class.  And he knew he had made the highest grade because the grades were posted in bar graph form on the bulletin board.  One time Elliot even knew he made the highest grade in the district.  I didn’t think that was okay.  I just see no reason for him to know that — not only does it put added pressure on him, but it also makes it hard for a kid to remain humble.  There is just no reason for him to ever know that he made the highest (or lowest) grade on any test!  Each time I saw the bar graphs of grades, I cringed inside because I just didn’t think it was right.

Well, this year Zachary failed one of his practice TAKS tests — not a new experience for him, but a terribly painful one each time.  And his failing  grade, like always, was put up on the bar graph.  But this particular test, there was ONLY ONE failing grade.  Yes, Zachary was the only student in his class to fail the test . . . and he knew he was the only student in his class to fail the test!

And the teacher had told the class that if everyone passed, then the class could have a special “no shoes, bring a snack” day.  He came to the car humiliated and heartbroken that he had ruined the special day for his whole class.  “It’s all my fault,” he kept saying through his tears.  “The special day is ruined all because of me!”

And a couple of the boys in his class had said, “Thanks a lot, Zach!”

Disappointing?  Humiliating?  Crushing?

Yes, it was a terrible day.  We cried some hard tears together that day.  And he still talks about that day and worries about that day and relives that day and talks about that day.  I have no doubt that that day will be one he remembers for the rest of his life — especially on days when he has a big test or a big presentation to do.

(I did have a conference with his teachers about that and Zachary’s scores have been removed from the bulletin boards from here on out.  But I don’t think I’m done with that battle yet.  Just last week, they took a practice test.  Zach passed it, but there was one failing grade, he told me.  That means some other child experienced what Zach did a few months ago.  That is NOT okay with me.)

Zach has been begging to homeschool.  He asks literally everyday if he can stay home from school.  He’s tired everyday.  He visits the nurses office several times a week.  He gets headaches and tummy aches.  He doesn’t care as much whether he succeeds or not.

It’s yucky.

And it makes me sad.  And it scares me.

I am not at all convinced that homeschool is the right answer for him.  But I think even if we accomplished NOTHING academic (which we, of course, would), then he could still benefit greatly simply from being removed from the stress and allowing me to encourage him and convince him again that he is good and smart.

Seeing how very different Zachary feels during Christmas break and last week during spring break, being away from the stress of school . . . it makes me long to bring him home so he can recover. . . and succeed.

Don’t know what we’ll decide to do.

Sigh.  Being a parent is never an easy task, is it?

Lots of Fun, but Lots of Money

A plastic ball and two bowling pins.

Image via Wikipedia

I love spring break.  I love spring break!  I LOVE SPRING BREAK!  I only wish it were longer.  I really, really needed spring break this year.  I needed it perhaps more than I’ve ever needed it.  And I have loved just hanging with my kids and having nearly no responsibilties.  Love it!

Yesterday the kids and I went out for pizza for lunch and then went bowling.  I thought it sounded like a fun, easy, cheap thing that all four of us would enjoy.  Well, the pizza was yummy and cheap.  And the bowling was a lot of fun.  But it was NOT cheap.  Gone bowling lately?  If not, then prepare to be surprised!  I dropped $45 for the four of us to bowl two games.  Unbelievable.

Need I point out that bowling is a possible nightmare of an experience for a child with sensory issues?  It is an even greater risk when you take two children with sensory issues into the place.  Think about it:  no windows, cave-like feeling, lights, computer monitors, cigarette smoke, balls crashing into pins, ball machines thumping, pin mechanism clanking, loud talking, people cheering, flat uncomfortable shoes that don’t fit . . . I could go on and on.  But both Zippy and Chloe did a great job. 

Is it a cruel mama who did her absolute best and won both games like crazy?  (Probably not any crueller of a mama who waited on her kids to wake up on St. Patrick’s Day so she could pinch them, knowing they hadn’t slept in green pjs. . .)

I did not get shoes for Chloe.  The excuse I gave the man at the counter was that she had on orthotics in her shoes and she needed to keep them on.  But the biggest reason was that I knew Chloe was going to sit down on the floor and push the ball toward the pins. . . and I didn’t think bowling shoes were necessary for that.  What is the purpose of bowling shoes anyway?  Does anyone know?  I mean besides just trying to make us all look like dorks out of some other decade.  Do they serve a purpose?

For the first part of the first game, I helped Chloe walk up to the edge of the alley — is that the correct term? — and sit down with the ball between her legs.  Then I would remind her to push the ball hard and fast.  She would sit and wait on the mood to strike her, and then she would push that 6 pound ball on its way.  It took a while for the ball to reach the pins, but it made it everytime.  And I think she knocked pins down with every ball but one. 

Watching the boys’ form was really entertaining.  Not a pretty sight, but entertainment, for sure!

For the second part of the first game, I helped Chloe stand up, hold the ball, and heft it on down the alley.  I think she liked throwing the ball just like everyone else was doing.  When given the choice, she chose standing up every time.  And again, she knocked pins down every time.

Chloe opted out of the second game so the boys took turns throwing balls for her turn. 

“Throwing balls” is probably not a respectable bowling term.  I’m really hoping no for real, genuine bowler follows my blog because I’m sure this post has been very offensive.

We all had “a ball”  . . . and did I mention that I won??!!  🙂  I was only winning to teach my children some character building skills:  how to handle it when your mama is better than you are at something.  And how to handle it when your mama rubs it in.  And a lesson in humility, of course.

Children of God

Here’s an awesome video for you.  Let me know what you think of it.

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