Archive for the ‘Special needs’ Category

Flooding Tears

I recently visited a local high school with a friend. Her son who has Down syndrome will be a student at this school next year. The transition to high school is a big one. She and her family have been working on this transition for years, fighting the status quo in our state, which is to keep kids with significant disabilities in special classes away from their non disabled peers.

Special classes for kids with disabilities are called self-contained classes. Self-contained as opposed to mingling about and switching teachers, classrooms, and subjects throughout the day. Typically these self-contained students stay in one classroom all day long and receive their instruction from one teacher with the help of several aides. Sometimes the students in these classes are allowed to go to elective classes or lunch with other kids. But for the most part, they are kept hidden away in private classrooms without any interaction with non disabled students.

My friend and I and several other friends of ours have been fighting against this status quo for years. We believe that our children should be educated right alongside peers who do not have disabilities. We believe that the positive peer pressure from being with these students and the friendships with these other students are life-giving and important. We believe that even if our children can’t demonstrate that they are learning everything the other students are learning, they deserve to be exposed to everything the other students are learning. The difference is literally as plain as our children still learning about the calendar and the weather and counting to 30 in high school instead of learning about the Periodic Table or the Cell Cycle. (Disclaimer: perhaps that is a simplified example, but it is true to what I have witnessed and heard about in Texas high schools)

So the other day while visiting this local high school, my friend and I stood talking in the entryway to the school, right outside of the front office. We stood in an active, busy thoroughfare of the main hallway of the school. We watched groups of students filing to lunch and to the library; then we watched students filing from lunch and on to class. The students, of course, came in waves as the passing periods came and went in the middle of the day. I love teenagers so I enjoyed watching them come and go, laughing or joking or cutting up as they went.

But then, surprisingly, when the hallway was quiet since it was not a main passing period, a group of about 8 or 10 students came parading by. A couple of them were holding hands with teachers and being led down the hall. It became clear that this was the special education class. The self-contained class. The kids with disabilities. The hall was empty except for these few students. They didn’t even pass paths with their typical peers during passing periods. They didn’t even see other kids on their way back from lunch. It was just them in the empty hallway.

My friend and I watched silently.

“Oh my gosh,” I finally whispered. It was as though I had been punched in the gut. I could not breathe as I watched them walk by.

And then the tears came. And they came hard.

Now, I am not a crier. I don’t cry. But here, in the entryway of this high school, I started crying. And I couldn’t stop. I think I mostly controlled my heaving breaths that were trying to escape my lungs as I tried to control my tears, but the tears certainly came.

It broke my heart. It made me angry. It made me sad.

And the emotions flooded.

This. This is why we fight. This is why we work so hard to get inclusion for our kids. This is why we help families. This is why we spread the word that inclusive education is important.

I was overwhelmed with the injustice of it all — the injustice that somehow these students were deemed unworthy to be learning with the other students. The realization that without loud, vocal, fighting mamas– this is exactly where our kids would be, separated from the rest of the world, parading down the hall with these students all the way to their private classroom, away from the other students and away from the rich learning taking place in those other classrooms.

And I realized that all the nights I complain about helping Chloe with her difficult homework from her 9th grade biology class or her Algebra I class, I should have been so thankful that she had the opportunity to learn biology and algebra instead of being ushered down the hall away from those subjects. All of those nights of hours of homework with her are worth it!

That hard World Geography semester review that had frustrated me the night before? I was suddenly so very thankful that Chloe and I were able to struggle through it. Because the alternative is no homework, no world geography, and no inclusion.

That parade of students showed me, reminded me, that everything we do and everything we’ve done has a purpose and it’s all worthwhile. All the fighting, all the work, all the rocking of the boat and questioning the norm has a purpose. We are fighting so that our children won’t be a part of that parade that passes by after all the other kids are in class. We are fighting so that our children can learn everything that the other kids are learning. We are fighting so that when a friend mentions their 3-D cell project or the Periodic Table, our children will know what the heck they’re talking about.

Yes, the tears came. And, yes, it was awkward and embarrassing. But the tears and the emotion were strong enough to remind me of the importance of our fight. The emotion reminded me why we speak up. And the emotion reminded me what we’re fighting for and what we’re fighting against.

I believe that my kids have the right to be educated right alongside the other kids. And I believe that ALL KIDS have the right to be educated right alongside the other kids.

I only wish I could help more students. I only wish I could convince more families to fight. I only wish I could stop that private and sad parade going down the hall while the rest of the world is off learning together.

Oh, how I want to change the world. Oh, how I want to change the status quo.

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How High??

I’ve said a million and one times that my girl would love to sit in the corner and play with baby toys all day everyday. She would also love to convince everyone that that is all she’s capable of.

Chloe is a smart little girl, and she’s amazing at fooling people — and she’s equally amazing at “reading” people.

How many times have I said that if you succeed at getting my girl’s heart, she’ll do anything for you? I’ve said it over and over and over. If Chloe knows you care about her and that you believe in her, then she’ll work for you and obey you. If Chloe doesn’t think you care about her … if she knows you don’t think she can do it, then I can promise you she won’t do whatever it is you have asked her to do. It’s how she ticks!

A great example of this is to compare last school year to this school year. Night and day! Last year, Chloe’s teachers were convinced that she knew nothing and was not capable of succeeding. They were convinced that she couldn’t read and couldn’t comprehend. They were convinced that Chloe did not belong in the general education classroom. And guess what? Chloe lived right up to their expectations. The result? A terrible year for everyone and a little girl who did exactly what her teachers expected of her, unfortunately.

Compare that to this year’s absolute opposite experience. The teachers and Chloe’s assistant are convinced that she knows it all. They are convinced that she can do and that she can read and that she can understand and that she can succeed. And they work hard at helping Chloe belong in the general education classroom. And guess what? Chloe is living right up to their expectations! This year miraculously (NOT!), Chloe is reading at grade level. Chloe is writing paragraphs. Chloe is succeeding. And the difference truly is the expectations and the heart of the staff of people working with her this year.

The moral of the story? We must be careful not to sell anyone short. We must always assume competency and act accordingly.

And just know that if you ever tell my little girl to jump, expect her to ask in her own way, “How high?”  And you can be sure that she will jump precisely according to your answer ….

Rescued … again

I’m thinking I’ve got you beat. I’ll bet my kids have been rescued by the lifeguard more times than yours have!

Zippy, especially when he was younger, would go under water at the city pool and stay there. He would just sorta sit there under water for a long time. The kid has pretty durn bad asthma, but, man, he could hold his breath under water. He would stay there. Just suspended half-way between the top and bottom. And just stay there. A long time. Long time.

When the young lifeguard(s) couldn’t stand it anymore, he/she would jump in and save him. Except the saving would nearly drown him! He would be peacefully relaxing, his little sensory-overloaded body in a very calm and relaxed state, when suddenly he was grabbed violently up out of the water! It would terrify him.

And it would always confuse the lifeguard(s) who really thought he/she was making a daringly brave rescue attempt.

This scenario played out more than a handful of times. Too bad we didn’t go to any one city pool often enough to let the lifeguards get to know Zippy and his floating-yet-not-drowning ways.

However, I don’t think Zippy was rescued even one time this summer. A first! This summer, more than any other, we really only swam at Mimi and Papa’s house and didn’t really frequent any city pool or water park. Would we make it a whole summer with no rescue?

I’m thinking so.

But Chloe nearly ruined it yesterday. She came really, really close to being rescued, and I can promise you it would’ve really surprised her.

Chloe has been loving floating on her back in her flotation suit this summer. She went to a friend’s birthday swim party at a nearby city recreation center. The center had a nice indoor pool which included a little lazy river. (But watching the rate at which the kids made it around that river, I’m thinking it’s not so lazy a river!) Chloe was floating by herself around and around and around the not-so-lazy river while I watched nearby.

I noticed one time around, she flipped up on her back and was loving the experience. How did I know she was loving it? Well, I could hear her growl over the noise of the river. Chloe has a happy growl that she uses when she is really enjoying something, and I am sure she was really loving the back-floating river experience by the intensity of her growl.

Enter in the young man on lifeguard duty. He sees, first of all, an awkwardly floating young girl making strange noises, not smiling. He goes into instant alert and concern. He takes half a step and alarmingly surveys the child’s situation. Indeed, the child must be in trouble because she’s still floating, moving in an awkward way, and making a strange, alarming sound. His neck lengthens as his alarm heightens. He takes another step toward the child.

I’m watching from the other end so I can’t communicate to the lifeguard at all. I am sure I am about to witness another of my children getting rescued from the pool.

As Chloe comes floating around the bend of the river and I see her a little more clearly, I laugh out loud at what I see as the lifeguard grabs his little red life preserver and jams his whistle in his mouth: my paler than pale little girl, floating oddly atop the water, motionless … and seriously appearing lifeless in her pale skin! I laugh, thinking of what that poor lifeguard is thinking and start swimming toward her.

I know I shouldn’t have laughed, but I couldn’t believe a Mastin was about to be rescued again!

Quickly I was on the move toward her — not to save her life but to save her mood. Being violently rescued by a stranger when your are happily in your own little peaceful space is not nice. I know this because Zippy has told me so!

As Chloe floated pale and motionless by me, I grabbed her by the arm and laughingly told her she could not float on her back at this pool — she was scaring people. She looked at me and with her eyes asked me to repeat that — it really didn’t make any sense.

I repeated, “You can not float on your back here, okay? You’re scaring people.”

She nodded okay and went on back around the river, careful not to flip up on her back again.

Later I talked to the young lifeguard and told him I had instructed her not to float on her back anymore since it was freaking him out. He genuinely thanked me, agreeing that he was very freaked out.

So there you go. I think I win! While none of my kids have been rescued by a lifeguard when their lives were in danger, my kids have been rescued — and nearly rescued — the most!

Challenged by the Norm

I must admit here that I oftentimes crack myself up with my titles that probably most of you don’t even notice. This title is no exception. I’m thinking it’s pretty clever.

Norm Kunc.

If you’ve never heard of Norman Kunc, you should stop now and google him. You should go to youtube and search his name. You should go to his website. He is so not-the-norm. And I was recently challenged by him as I attended two workshops where he was the presenter.

The day started with a talk at a local library. Norm told part of his story: he was born with cerebral palsy. His family was encouraged to put him in an institution. But his mom chose to take him home. He attended a special school for disabled children until he was in 8th grade at which time he transferred to a regular public school. He went on to graduate from public school. He continued on to graduate from college and later received his Master’s degree. He is married and has children. He owns his own business. He travels internationally as a public speaker. His disability does not prevent his living and enjoying life.

His story is remarkable … inspiring. He challenged us about the all-too-common act of helping others (especially those with a disability) out of benevolence and out of a need and desire to help others. So many times helping other people makes us feel better. Sometimes helping is for us instead of the person we are helping.

Norm presented to us that perhaps the person with a disability doesn’t even want our help — maybe doesn’t need it. Sometimes stepping in to help shows a lack of respect and steals the person’s dignity. Perhaps it would be more of a help to him/her if we just left them alone, gave them space and time to complete the task themselves.

It’s a new way of thinking for me. For so many who attended the workshop.

Norm Kunc was funny, entertaining, challenging.

That night I attended a dinner where he presented the keynote. He talked more about his story. He told about the reason why inclusion of individuals with disabilities is so vital and why it is so personally important to him. Not only did the decision to include him in general education beginning in grade 8 change the course of his own life, but he told of 2 of his classmates who were also moved to a general education setting at the same time. Norm and these other 2 students went on to live very successful lives: college, marriage, children, success, happiness, fulfillment.

But he told of a 4th classmate from his special school whose parents made the decision not to transfer to general education. Norm said this student’s parents were scared of trying to include her in a regular school. She stayed in a segregated setting for her schooling. And as a result, her life went very, very differently than Norm and those other 2 students. This other classmate “graduated” from the special school and didn’t have the experience or skills or diploma to get a fulfilling job. This other student lived with her parents her whole life; this other student never experienced a romantic relationship, marriage, or having children. This other student led a very secluded life, and her life was ended early as her parents in an act of desperation and probably deep depression killed her and themselves.

A very eye-opening comparison. I and several other attendees gasped as we heard how this other student’s life ended.

I don’t pretend to think that this other student’s life story is how all stories end for students who are not included in society. Thankfully they don’t all end in that degree of tragedy. But it sure paints an amazingly sober story! What a comparison. What a tragedy.

The night really could’ve ended there. The story of “that other student” was enough to send all of us attendees out to conquer the world. But Norm went on to present the idea of the problem of disability not being in the lives and bodies of those individuals living life with a disability; instead, the problem is with our society. The problem is in our society. It’s society’s problem. Building a ramp to enable a person to gain access into a building is not just a nice thing to do. It is a way that we as a society have to attempt to fix the problem we have created — a building with an unaccessible flight of stairs. As a society, we act surprised and shocked and disappointed and fearful when someone has a disability. We need to recognize that disabilities are a natural part of life. There will always be disabilities. Whether people have those disabilities from birth, after an accident, or with aging. The problem is not within the disability … the problem is in how we respond (or don’t respond) to the fact and the presence of disability.

Norm Kunc also pointed out that his disability doesn’t limit his life. He challenged people who feel sorry for him or think of his life as less — less fulfilling, less meaningful, less fun, less important. Instead, he pointed out with humor that he’s glad he’s not ordinary! He wondered why people would even think that he wishes to be ordinary. He is happy; he is fulfilled; he is successful; he is loved; he is amazingly inspiring; and he has a disability.

We all really did leave that meeting feeling like we were ready to go out and change our world! We were so intrigued and inspired and encouraged. I have heard several people who attended that night say they didn’t sleep for thinking of the ideas that Norm had stirred in us.

But I was left wishing that many more people had been there to hear Norm. The truth is, he was talking to a roomful of folks who already agreed with him. I was wishing the room was bigger … and fuller … and that our society was getting more enlightened by Norm’s words.

I am honored to have been able to listen to Norm. What a day!

Again, I encourage you to peruse his website and read all you can. And certainly if you ever get the opportunity to attend one of his speaking engagements, go, Go, GO!

Painful Regret

I am sorry.

Those words seem so trite and so over-used. But they’re the only ones I know.

I am so sorry. I didn’t know.

If I’d have known, I promise I would’ve done a better job. I would have been more sensitive. More helpful.

I’m sorry, Keith.

I’m sorry. And I’m filled with regret that I wasn’t the one who made a difference in your school experience … in your life.

The emotion surprised me this morning, driving home from dropping off the kids at school. Someone on the radio said Keith or something that sounded like Keith, and immediately there he was as clear as crystal in my mind’s eye.

Keith. I have no idea what his last name was. I can’t even think how old he might be now. I haven’t thought about him in nearly 20 years. But I was his English teacher when he was in middle school. I didn’t have a relationship with Keith at all. I just graded his papers, signed his report card, and shook my head when I saw him struggling with his horrendously trashy locker. I grinned a grin motivated by sympathy and disgust when he walked down the hall under the weight of his backpack that held an amazing heap of disorganized chaos. He had no friends. He was just Keith … odd and alone in the world.

I didn’t know.

I write through tears this morning as I feel the deep regret of missed opportunities. I could’ve been his angel. I  could’ve been the one who stepped in to support him.

But I didn’t know.

I feel certain that Keith was on the autism spectrum. And I don’t think I knew anything about any spectrum back then.

I don’t even think he had an IEP (special education paperwork). And I know I had no idea what an IEP was or the information it contained.

Along with thinking about Keith this morning, I remembered painfully the portable building at that same school where I taught. I never knew what that building was for until my 2nd or 3rd year teaching there. But I eventually learned that the portable building housed the special ed kids who were bussed here from all over the rural county where I taught. It was a self-contained class — and none of us even knew they were there. Those students ate lunch in the portable by themselves. They went to the restroom while the rest of us were in class, I guess, because we never saw them, and we never knew they were there.

Picturing those students in the portable building today … their disabilities were no more “severe” than Chloe’s. Knowing that that portable building is the self-contained environment that Chloe would be placed in if we still lived there caused a deep pain in my chest. Those students were shut off and secluded from the rest of us. They were never given the chance.

And I didn’t know. I didn’t understand.

In a way, I guess Keith was the lucky one. He at least got to live life with the rest of the world. But he had no support. He had no one who understood his struggles. The adults he might have depended on — of which I was one — didn’t step up to support him. So he was alone … alongside the rest of the world.

It pains me to think about Keith. I partly think I can’t blame myself for what I didn’t know. But then again, I’m guessing that there were people 20 years ago who were trying to educate teachers — trying to educate me — and I didn’t listen. Or I didn’t hear. Or I didn’t go out seeking.

I’m sitting here wishing I could again forget about Keith. I’m trying to force his image out of my mind. But that wouldn’t be fair. It wouldn’t be fair to Keith. It’s only fair that I remember his face well. It’s only fair that I choose to learn from my experience — or my lack of experience with him. It is only fair that I am motivated by the memory of his face and by the memory of his struggle and by the memory of his lack of support.

So really. I’m sorry, Keith. I sincerely hope that you found someone to understand you. I truly hope that you found someone who could support you in the exact ways that you needed. I hope … I really hope that you are happy today. And that you are fulfilled today. That you are loved today. And that you are appreciated today. And I hope that you are heard today… And I hope you don’t remember me. And I hope you never saw the way I looked at you. I hope my face isn’t one you remember in the lineup of adults who coulda, shoulda tried to understand you.

But, Keith, in case you do remember me … know that I am changed. And know that I am striving to make this world a better place for you and for those who come after you. And know that I, today, am pretty convinced that while you sat in my classroom nearly 20 years ago silent,… that you probably could’ve taught me a wealth of content had I simply had ears to listen to you. And I hate that I missed out on knowing you.

Her Voice

Delight!

Recently I also delighted in the sound of Chloe’s voice. Chloe is 10-years-old and is mostly nonverbal. When she vocalizes something, we notice. And we smile. And we’re proud. And we think it’s precious.

We were at a group Bible study recently at a friend’s house. Chloe was back in the little girls’ room playing toys. And several times she mimicked a talking toy. I heard her clap a couple of different times. She talked off and on, unaware that anyone was listening.

But I was listening. I heard it. And it made my heart glad. It was difficult to follow the adult conversation because I was so taken by the sound of Chloe’s voice in the next room.

I love that precious little girl. And anytime she is talking, it makes me stop and listen. And my heart is so filled with singing and smiling.

Keep it up, little one!

The Bed Tent Saga Update Part Five

Have I told you lately how much we LOVE Chloe’s bed??

We love Chloe’s bed SO MUCH that …. well, I can’t even describe it! The peace. The sleep. The safety. There is nothing like it. There is really nothing like it.

Every night, we zip Chloe in her cute bright pink bed that she loves (that’s a bonus! not a requirement, but a bonus!) and we know that we know that we know that she will be there safe and sound when we return in the morning. No need to go check on her ten times every night. No need to worry if she’s safe.

It. is. crazy. awesome.

And you cannot put a price on safety and peace and sleep. Period.

But TheSafetySleeper has a price. And the price at first seemed way too high. The price at first seemed like a no-go for our family. But please let me urge you to consider and research your options so that you, too, can experience this peace, safety, and sleep. It really is amazing!

First, I must say that we didn’t have the money for the bed. We loved it, and we wanted it, but we knew we couldn’t afford it right now. I am assuming that many of you who are experiencing sleepless nights and are wishing you could buy The Safety Sleeper for your child are in the same boat. I’ll bet you’re thinking, “Great idea, but I will never be able to afford that bed.” So I wanted to talk about that a bit.

I know that some of you have already checked out The Safety Sleeper website and drooled over that amazing bed but have already decided you can’t buy one. I wanted to help you get past that and see if I can help you figure out a way to get one for your child … for your family.

Ultimately, my parents actually helped us a lot! They knew the need. They saw the bed. And they wanted to help us out. And they chose to give us a chunk of money for the bed. So that’s my first idea for you — is there someone who loves you or loves your child who might want to help you pay for the bed? I’m not condoning begging; nor am I encouraging you to mooch off your folks. I am saying that there are people who love you and there are people who want to help you. And those people would maybe love to have a chance to give to you. Before she found out that we had already ordered the bed, one of my best friends said that she had already started the conversation with another friend of ours about raising the money to buy the bed for us — they were planning on pitching in and seeing if other friends wanted to pitch in, too! So … seriously … don’t decide against the bed just yet because your friends and family may want to help you buy it.

Is this an uncomfortable conversation to have? It’s very weird to admit that you have a weakness –being poor! 😉 — and that you need help! I don’t guess I should pretend to speak for us all.  I should just say that for me it is hard to admit weakness and the fact that I need help.

Another thought that Paul and I had was to have a garage sale. We always have junk laying around and piled around that we are ready to get rid of. And as they say, “One man’s trash is another man’s treasure!” Or at least we hope! So a garage sale is a great way to earn some cash. Probably if you asked around and explained the cause of your garage sale, probably your friends would bring some of their junk over for you to sell, too. Depending on how long it’s been since your last sale, and depending on how much junk you have piled around, you could make a pretty little penny to put toward the purchase of The Safety Sleeper.

We even thought of doing some sort of fundraiser event. A bake sale? A silent auction? A lemonade stand? Okay, so those were my only three fundraiser events that I thought of.  But I’m sure there are plenty more that someone with a creative mind could think of. Great ways to make some money.

Here’s an idea that isn’t very popular: get a temporary parttime job. I know, I know — it sounds crazy. But seriously, if you got a parttime job and saved every penny that you made to put toward The Safety Sleeper, then before very long, you’d have a chunk saved up to help pay for the bed, and then you could quit your 2nd job again! Someone do the math and figure out what I’d make in a department store and figure out how many hours I’d have to work to get a chunk of change. Whether you worked enough to pay for the whole bed or just worked enough to pay for part of it, it is a great way to help out financially and to make this bed a reality for your family.

If you go to The Safety Sleeper website, you will see another amazing way of getting The Safety Sleeper (or other equipment, for that matter!) Click on the “Financial Help” button to learn about different organizations that help families buy these beds or other equipment. Fund it Forward is an organization that Rose at The Safety Sleeper works closely with. Fund it Forward and the other organizations listed are great resources for families who can’t sit down and write a check to pay for their child’s bed. Check it out!

There is also information on The Safety Sleeper website about insurance / Medicaid paying for the bed. Find this information under the FAQ section of the website. Since my parents were able to help us buy the bed, I did not go this route. But I plan to start the process to see if insurance will reimburse us for part of the purchase. I will keep you posted on that process. I do know that Medicaid won’t reimburse for the purchase, but our private insurance might. Compared to the fancy medical wood bed that we were trying to get Medicaid to pay for for Chloe, The Safety Sleeper costs nothing! (And it’s portable!) So I’m hoping that we’ll get approved for reimbursement for it.

Are you as uncomfortable talking about money as I am? I think it’s yucky to talk about money. But I LOVE talking about saving money or being smart with money! So there ya have it. I thought that since some of you probably looked at the website a couple of weeks ago and immediately decided you could never get The Safety Sleeper for your child, I wanted to give you some ideas to start your thinker! We love Chloe’s bed, and I really think you’d love it, too. And I know money is tight … I can relate!

I will tell you that Chloe and I have both slept better in the last two months than either of us has in the past SEVEN YEARS! Did I tell you that we love Chloe’s bed??

And now, watch this video of Rose. I told you she was darling! Here she is talking from her heart about her desire to help families get a safe bed for their children.

The Safety Sleeper™ from Heiko Spallek on Vimeo.

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*Disclaimer: Rose gave me a good deal on The Safety Sleeper and I’ll be credited a bit with every buyer who mentions me because I promised that I would talk about it on my blog. But as most of you know by now, I’m gonna tell it how it is! So you know I’m not joshing or exaggerating the truth. The truth is that the bed is incredible, and I have a feeling I’ll be singing its praises for a long, long time!  If you visit the website or purchase a bed, be sure to let Rose know that I sent you! 🙂

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