More than a Paintbrush

Chloe proudly showing the paintbrush that she was given. The leaders let her keep it. And she is in love with it.

“How was your day?” a mom asks when her child climbs in the car after school.

“What did y’all do today?” Dad asks when he picks up his son from Sunday School.

“How was it?” a parent asks after practice or rehearsal.

These are the questions, answers, and conversations that many parents take for granted. They may grumble if their young son doesn’t give them the details they want to hear. But these are daily conversations between parent and child.

Unless your child is nonverbal. Many children have communication disorders that prevent this familiar conversation from happening. These families rely on teachers, siblings, aides, and friends to fill in the details and help with the conversation.

Chloe, my 16-year-old daughter, is mostly nonverbal. She uses some sign language, some verbalizations and gestures, and a communication device to communicate. But communication in general is very tricky and difficult for her. And questions like those above are met with a shrug. She’s never volunteered information from her day or from cheer practice or from church. The conversation and concept make for a complicated communication exchange. She’s learned to just shrug and shake her head. Hearing and understanding the question, thinking back over her school day and choosing something to talk about, forming those words, and then communicating it effectively… it’s a conversation tool she hasn’t mastered.

It might seem strange for a parent of a teenager to never know any details — even a general description— of ANY experience that teen has away from you. Thankfully there are willing people to at least answer general questions on her behalf.

But Chloe has never in her life told me about something she did while we were apart. Literally never. You just get used to it. Yes, you miss it. Sometimes you long for it. But it’s just part of it. It’s just your life.

Thats why it was a big deal this past week when Chloe used her communication device to say 2 words to me when I picked her up.

We were at family camp. After breakfast, the parents enjoyed a time of worship and teaching from 9 to noon while the youth had Bible story, music time, and art.

One day when we were reunited with Chloe after morning sessions, I heard her repeating something over and over on her communication device.

“Soft paintbrush… soft paintbrush… soft paintbrush…”

I acknowledged her words like I always do. I instinctively asked the helper who was with her for the week about the paintbrush, and she told me that, yes, the paintbrush was really soft… it was blue… it was really cool. And she said Chloe had enjoyed gently brushing her cheeks and lips with it.

It wasn’t until an hour or so later that I realized what had happened. This was a monumental moment! A moment to be remembered and celebrated! For the first time in her entire life, Chloe had told me about something she had experienced while she was away from me. She reported back to me. Something happened that had impacted her enough that she wanted to share it and talk about it. And she found the words and means to say it.

Mic drop. Unbelievable. Chills and tears.

What an amazing experience with my girl!

 

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!

The Button

I’m nearly constantly amazed at my girl.

Chloe is 10 and is mostly nonverbal.

Please understand nonverbal to mean that she doesn’t communicate with the same spoken word that most of us do. Please do NOT understand nonverbal to mean non-communicative which would be a huge misunderstanding of Chloe.

My girl communicates! She signs, she gestures, she acts things out, she attempts to vocalize and pronounce words. She also cries, screams, kicks, throws things, and jumps in frustration — all of which are part of her communication.

As most of you know already, I’m a big believer that all behavior is communication. It’s one of my mantras, really. Generally, Chloe has no problem getting her point across and her needs communicated. We may need to stop and survey the situation to access exactly what she’s saying, but I promise she is not just throwing that toy to play catch — she’s trying to tell us something that we’re missing! (And we all need to learn to be better listeners!)

But no worries to you today — I am NOT hopping up on my behavior is communication soapbox today! No. Instead I’m telling a cute story — one of many– of a time recently when Chloe impressed me with her communication skills, flexibility, and creativity.

The other day as were getting out of the car, Chloe saw the name on a name tag that was stuck on her purse: Parker.

Chloe read the name aloud: “Parker.”

And then she signed: “School,” indicating that she knows a Parker at school.

I acknowledged her statement, not completely sure I knew which kid Parker was. I thought I knew, but I wasn’t for sure. “Whose class is Parker in?” I asked to clarify which kid Parker was.

Chloe said pretty clearly (although let me point out that I had a definite context and there aren’t that many teacher names that she would’ve said at this point): “Power.”

I acknowledged and clarified that Parker is a student in Ms. Power’s class, and Chloe nodded her head in agreement.

Next as she stood in front of me just before stepping out of the car, she drew a circle in the air and then drew a line right down the middle of it.

Hmmmmm. Not sure what that was. “A circle?” I asked. “Did you draw a circle?”

She nodded, but I wasn’t convinced that was what she had done or what she had meant to communicate. Hmmmmm. Maybe it was a P?

“Did you draw a letter P? P for Power?” I asked Chloe.

She nodded yes as she oftentimes does, but I could tell that she was just saying that. She had meant to communicate something else, and I had just missed it, and she doesn’t usually give me 2 chances.

Chloe went on in the house, made a beeline right to her room, and grabbed the first battery-operated toy she could find. As she pointed to the toy’s power button, she vocalized something … something … power?

“That’s the power button, huh?” I said, grasping at straws.

She again pointed to the power button and said, “power” again.

And then I noticed the symbol: a circle with a line through it — the exact circle and line that Chloe had drawn in the air!

“Oh! Power! You drew the power-button symbol in the air! Of course, Ms. Power!! Yes, Parker is in Ms. Power’s class! Yes! Good! Good!”

I smiled, again amazed at the lengths she goes to to make sure she is communicating with those who will listen. She must be so relieved when we get it!

She is remarkable. And how many times do I just miss it??

I’m guessing she wishes everyone she tried to talk to had a power button and all she had to do was push it …. We would “turn on,” and then we would all get exactly what she was trying to tell us! Yeah, that’d be nice!

 

Safety Sleeper Travels!

Ok, you already know how much we LOVE, LOVE, LOVE Chloe’s bed, right? Well, we love it even more after having traveled with it.

Over spring break, we planned a little get-away for a few days. The day we left we had to leave very early in order to get to our destination by lunchtime since we were meeting my nephew for lunch. I set the alarm extra early so that Paul and Elliot would have time to take down Chloe’s Safety Sleeper bed and figure out how to get it back in its little travel bag.

Unfortunately, my alarm didn’t go off as planned so we got a 30 minute later start than planned. I was worried we’d leave later than we really needed to.

The amazing, surprising news? Before I even realized that Paul had gone to Chloe’s room to take her bed down… before I could even send Elliot back there to help him figure it out, Paul came out of Chloe’s room grinning and holding the bright pink bag that held all the parts to Chloe’s bed. It took Paul less than 6 minutes to take it apart and pack it up! Wow!!

And we were ready to hit the road … on time!

(In case you’re wondering, we made it in time to eat with my nephew! :))

That first night in the hotel, Paul set up Chloe’s bed right beside the window, where you’d put a roll-away if you ordered one. And he set up Chloe’s bed by himself in only 5 minutes! Voila! It was ready to go! It took longer to blow up the twin air mattress that we had purchased than to set up Chloe’s Safety Sleeper!

And it worked like a charm. In the past when we sleep in hotels, I push one of the beds against the wall and put Chloe next to the wall, me in the middle, and Elliot on the other side of me. And then I hardly sleep because I’m squished and claustrophobic between them — and because I can’t go to sleep too deeply for fear that Chloe will escape the bed and possibly the room! But with the Safety Sleeper, I slept more soundly, knowing that she was secure and safe in her bed!

We stayed two nights in that hotel, and then we traveled to Paul’s parents’ house for a night or two. Again, Paul set the bed up easily in their guestroom in under 5 minutes time! For the first time since Chloe was mobile, I was able to stay up with the grownups instead of laying with Chloe to make sure she stayed put.

What a way to travel!! Love it!

And I think Chloe did, too.

The Safety Sleeper for travel? Ummmm, YES!! 🙂

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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! 🙂

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!

Delighting Today

As most of you know, I chose a word for 2012. A word to focus on. A word to sorta guide me. A word to remind me.

Delight.

My word for 2012 is Delight. It has been more of a challenge to Delight than I was expecting. It is so easy to get wrapped up in the daily struggles, big and small. It is so easy to get carried away with my to do list each day.

But today I delighted.

I went away for the weekend on a church women’s retreat. I was gone for 2 nights, and Paul took care of everything single-handedly. (Well except for a few hours when my sis-in-law had Zippy and Chloe.) Coming home, I was excited to see my family. Don’t know if you’ve noticed before, but I rather like my husband and my kids. They are my life, and they complete me. I adore them. I breathe easier when we’re all together and accounted for.

So coming home was a nice feeling of expectancy and reuniting.

Elliot was the first one I saw. He ran across the parking lot to greet me. He was genuinely pleased to see me and told me that he missed me.

Then I greeted Zippy who is always glad to see me. Even when I’m gone for only an hour, he often greets me as though I’ve been away for a week. I love that kid.

And then I said Hi to Chloe. When she heard my voice she looked up into my eyes for longer than she usually does, seeming to take it all in and making sure it really was me. It was a sweet look. And then I made her give me a sweet kiss.

And then I saw Paul and was genuinely glad to see him and to touch him.

I was home. And all was well. 🙂

She Knows!

A friend of ours is our number one respite care provider for our kids. Zippy refers to her lovingly as his 2nd mama. She adores my kids, and the feeling is forever mutual.

This week she bathed Chloe. During the bath the bath water got dirty, as is often the case with bathing a dirty child. She was draining the dirty water and planning to refill with clean water so Chloe could continue to play in the bath tub. Chloe started to put the washcloth in her mouth to suck on it, but the sitter told her NO, explaining that the water is dirty … you don’t want that in your mouth … that’s yucky … don’t put that in your mouth … I’m draining the water to get some cleaner water … this water’s dirty … we don’t want this water in your mouth … it might make you sick … it’s yucky … this is very dirty … don’t put that in your mouth …

And Chloe turned and looked right at her, and clear as a bell and with a little exasperation in her voice said, “I KNOW!”

As you can imagine, the sitter thought it was hysterical and very clearly got the message that Chloe wanted her to shut up about the dirty water and the washcloth!

Love my girl making herself perfectly clear! 🙂