Archive for February, 2012

To Hug and To Hold

A few nights before Valentines, I sat with Chloe to work on her Valentines Day cards for her class. I had the list of the students in her class, and as I read each name, Chloe chose which card she wanted to give to that friend. This whole process went without episode until we got to one particular boy’s name.

When I read the name Victor, Chloe looked up from her stack of cards, looked me straight in the eyes, and said, “Hold” as she cupped her little hands together like you would do under the faucet to catch some water.

“You want to hold Victor?” I asked her, smiling at her for thinking something special about someone in her class.

She nodded Yes, that she wanted to hold Victor.

I, of course, thought this whole episode was cute and endearing but quickly forgot all about it.

Forgot about it, that is, until at the Valentines Day party when I met Victor. He had come up to Chloe’s seat to tell her Thank You for the card. He hardly got the  words out before the two of them embraced each other. It was a quick, friendly hug that was 100% mutual.

And then Victor, that precious smallish boy, turned to me with the biggest, toothiest, joyous smile and reported excitedly, “I love Chloe’s hugs!”

And I knew immediately that the feeling was mutual. Even at home, Chloe had talked about wanting to hold her friend Victor.

I’m not much of a saver of things. I throw things away. But I might just hang on to Chloe’s Valentines Day card from her friend Victor this year.


Little Things

Today all 3 of my children are taking big district-wide exams. Math tests. Math tests that take 4 hours. Yuck. Picture with me, if you will, Zippy and Chloe taking a math exam for 4 hours … Yeah, nice.

But it’s part of life right now so we push ahead and make the best of it. (And pray fervently for education reform in our state and in our nation!!)

This morning I was having a talk with Chloe on the way to school. I was encouraging her to just do her best on her math test. Don’t let it frustrate you. Don’t throw your pencil. Just take your time. And use your calculator for adding, subtracting, and multiplying.

Elliot piped up, “She can use a calculator?”

“Yes,” came my reply. (Actually, unfortunately … I think my response may have been “Yeah.” Ugh. Trying not to use that word …)

“Why can she use a calculator?” he asked. And then the words that made me smile a great big smile. The words that showed how informed my 12 year old is. The words that proved how different his life is than other 12 year olds. The words that brought me joy. Words that others may have missed or words that other moms may not have even understood. “Is that part of her IEP?” he asked.


“Is that part of her IEP?”

Yes, it is part of her IEP. An IEP is an Individualized Education Program. An IEP is a very important part of every special education student’s education. It is the paperwork that lays out everything the child needs support in and lays out exactly what needs to happen for the child to succeed. It is the paperwork that is completed by the ARD committee or the IEP committee on behalf of the student.

While “IEP” may be a foreign concept and foreign word to many families, it is apparently a common phrase in our household. And it made me smile that my 12 year old again is listening and involving himself in the life of his sister. He continues to be an advocate for her. He continues to know what’s important in her life and in her education. He continues to understand — at least a little bit — how it is all so vital to her future.

And he certainly made me smile.

It is the little things, eh?


Taken By The Color

Taken by the Color

by Kelly Mastin

There on the homework so mundane,

My fingers pointing at the words we read,

I stop, surprised by what I see, sitting there in front of me.

There atop my hand, sits his.

Connected — mother and son are we.

But once again I am reminded. Once again I am surprised.

Can we be so different? My son so different from me?

My hand is pasty pale, but his is dark and brown.

Mine shines bright white, nearly pink,

While his is warm and brown.

How did I forget we were different? How could I be surprised?

I stare at our hands: So different. So diverse. So beautiful. So right.

And my heart interprets: It’s unity and sameness. It’s family and love.

Our hands tell our story — of adoption, redemption, and love.

I capture a mental snapshot of our hands there together.

Light and dark, white and brown –contrasting yet entwined.

Then, poof!  The flash of the bulb causes the clock to tick again.

And we’re back to doing homework, back to the mundane.

Back to being just my son and me.

A Tough 90 Minutes

Those of us who have no sensory processing issues have no clue how difficult a simple trip to the store can be. Those of us who have no anxiety disorder have no clue how anxious a person can feel for the smallest of reasons. But those of us who live life with a person who deals with these things at least has a small inkling of how it must be.

Zippy’s 90 minutes:

Mondays are math tutoring days, and Zippy stays after school for 45 minutes to get extra help from his math teacher. Sometimes Chloe’s bus is late so I leave Elliot home to get Chloe from the bus while I run the 4 minutes up to school to get Zippy from tutoring. Well, it wasn’t til around 2:15 that I realized Elliot was staying after school today and he would not be here to be my backup incase Chloe’s bus was late. I emailed the teacher to ask if it would be okay if I was a few minutes late getting Zip from tutoring or if she’d rather me just get him at 3:00 and miss tutoring. She said being late was fine. So it was settled.

But the phone rang at 2:55. It was Zippy’s other teacher telling me that he didn’t want to stay for tutoring. He had had an anxiety attack and was upset and needed to come on home. She wasn’t sure whether it was the low test grade that had set him off or the fact that the low test grade meant he didn’t get a piece of candy after school. (She knows him well enough to know that candy is pretty darn important to him!) So I went up to school to get him.

When I arrived, he wasn’t in the pick up area — he had gone back upstairs for tutoring. Ends up that the first teacher who I had emailed earlier had sent him back up to tutoring saying she had just emailed with me. She knew nothing about the anxiety attack or the phone call from the other teacher. So I headed back home, knowing that probably he was not going to be happy when I finally picked him up.

A bit later, the phone rang. It was Zippy. He had been sad and crying in tutoring and had tried to hide it, but his teacher knew he was upset. She had talked to him and apologized that she didn’t know about his rough afternoon. She was sorry if she had hurt his feelings and made it worse. He wanted me to come pick him up. But I couldn’t since I was waiting on Chloe’s bus to arrive at our house. He would just have to stick it out.

The teachers, being very sweet and understanding, just let him hang out in a different room and relax a bit instead of attending his much-needed tutoring. It meant a lot to him that his teacher had apologized and had felt badly. It meant a lot to him that they allowed him to just hang out.

Chloe’s bus was later than usual. I finally arrived to picked Zippy up at least 10 minutes late. (I am NEVER late to get my kids, and I can’t stand it a bit!!) He was really okay when I got there. He talked about it a little bit, but mostly he was just touched by how sweet his teachers were. And then it made it all better when I presented him with a homemade cupcake made especially for him by a friend who loves him very much. It really made it all better. But not as much better as THREE cupcakes would’ve made it! 😉

We then had to run and get Elliot from tutoring — also 10 minutes late!!

The whole time in the car, Zippy alternated between “turn it up” and “turn it down” as he tried to get to that happy medium volume of the car radio. I nearly threw something at him for all the times he asked me to adjust the volume. Ugh. Do the rest of us have to be victims of his sensory issues?? Ummm, yeah, I guess so. Unless we want to push him over the edge into a total mess. And we all know it is just not worth it.

Then we had to make a quick stop at the grocery store — for just one thing to complete dinner. Elliot and Chloe stayed in the car for convenience-sake. Zippy came inside with me for safety- and sanity-sake. (Don’t dare leave a kid who is as much on-edge as Zippy was today in the car with his siblings for more than a microsecond. Believe me, again, it is not worth it.)

We stepped out of the warm car into the cool, damp weather — not pleasant for an edgy sensory kid. And then he heard a parking lot light buzzing. “What’s that terrible noise??” Zippy yelled as he covered his ears. “When will it stop??” he yelled in a panic. Then we were hit with the exhaust smell. An older-model truck with a loud engine and stinky exhaust drove slowly through the parking lot in the same direction we were walking. It was impossible to cover his ears and his nose so we just took off running toward the door of the store.

Once inside the store Zippy sighed a heavy sigh and commented how much nicer it is inside Kroger than outside. Then he was hit with the sights and sounds of the grocery store.

“Mom, can we get soda? We are low on soda.”

“Can we get cookies? We don’t have any cookies.”

“Chips. Mom, can we get chips? We’re really low on chips.”

“Mom! Mom! Can we get chips?”

“Mom! Can we get candy? Mom! MOM!”

I tried to remain calm and ignored all the shocked stares as this 10-year-old followed me through the store speaking in a megaphone voice demanding every single thing in the store.

Just keep walking. Walking, walking. Just keep smiling. Smiling, smiling. Just keep saying No. No, no.

And we walked back out to the van. Well, I walked. Zippy twisted in circles around me. Twisting, spinning, chanting my name.

Again when we were driving home, Zippy talked about how nice his teachers were. It meant the world to him that they were so thoughtful and kind. And he wished our friend had made 4 — no 6 — cupcakes so we could all eat some more.

And then we were home.

Home, sweet home.

Home, safe home.

Love and Worry

I’m scared, Mom!” came Zippy’s words, filled with worry.

And I was immediately reminded of very similar conversations with Elliot in the past.

The conversation had started simple enough. Zippy asked if he could live with me forever. Well, actually, he asked me if he could have my house when he grows up. Then when I asked him what in the world I would be doing, he agreed to let me live with him in my house. With his three kids. And his wife. But I took all of that to mean that he wanted to live with me forever. What?? I’m sure that’s what he meant. He promised me that he would never throw his own mama out on the street. That proves that he wants to live with me forever. So there.

And then came his questions about Chloe as a grownup. What will she do? Where will she live?

I tried to make it sound so simple and obvious: “Well, if she wants to live with us, then she can. Or if she wants to live with friends or with her husband, then she can. Just whatever she wants to do.”

He apparently knew that it might not be quite that simple. He asked another question, trying to put his mind and heart at ease.

I basically repeated myself, but this time adding the fact that “she might need some help, but she can do whatever she wants to do.”

That’s when his emotion surfaced, and he let me in on the whole reason that this conversation even came up: “I’m scared, Mom!”

While I did my best to assure him that Chloe will be fine and happy when she grows up — mainly because I think her 10-year-old brother doesn’t need to be scared about his little sister’s future — I knew that there is certainly more than a twinge of fear inside my head and heart about Chloe’s future.

I don’t think I’m as scared as I used to be since I have thought long and hard about Chloe’s future and have a vision for Chloe for long term. It helps to have thought all of that out.

But the truth is, I have no idea what Chloe’s future will look like. As I’ve already explained here, Paul and I are huge advocates for Chloe and plan to fight for whatever we need to fight for to ensure that she is offered the life that she deserves. However, the truth is, too, that at every turn society tries to steal away the rights that should be hers: people staring or questioning, people not giving her a chance, stereotypes, the school system having no expectation for her, doctors who are one-sided and one-sighted, groups who exclude her, doors closing in front of her …. The odds are stacked against her.

But Chloe has a team of people around her who love her and value her. She has a team of people around her who are willing to go to bat for her if needed — and to go to battle for her if needed.

And even if I am a bit fearful, I don’t intend to let my little 10-year-old worrier know that I have that fear. It’s not his to carry yet. I’ll let him keep the big worries he already has. And hopefully by the time he’s ready to take on more grown-up things, Chloe’s bright future will already be playing out before his eyes.

Yes. Hoping and praying so. And working toward that goal.

But for now, Sweet Boy, just know that your sister is going to be just fine.

The Bed Tent Saga Update Part Four

(The one in which I include lots of videos of Paul and Elliot setting up The Safety Sleeper …)

Anyone still with me? I hope it’s okay to split this story up into several updates. A little annoying, yes. But otherwise the post would have been so long … so thanks for bearing with me.

Since you’ve been so patiently waiting, I want to start this post out by showing you the photo of Chloe’s all-finished, all-put-together, ready-to-sleep-in bed:

We are LOVING it!

(Just for the record: Yes, I know Chloe needs a pretty little bedskirt now … just haven’t made that happen yet.)

Chloe was thrilled and excited while she waited for the bed to be assembled:

Continuing from Part Three, Elliot and Paul worked together to put Chloe’s bed together. It took no time at all. No instructions were needed. Just match the poles and slip on the tent, zip the zippers, insert the mattress, and voila! Great new safe bed!

<insert Hallelujah chorus –opera style>

It was fun to watch Elliot and Paul set up the bed. Paul said the job could easily be a one-man job, but that it was certainly nice to have a second person.

Did you notice Elliot’s comments in the video above about the “worth” of The Safety Sleeper?? If not, start watching at 1:20 and listen to him explain exactly how much he thinks this bed is worth! Again, wisdom from my 12 year old! He knows the value of sleep and safety — he’s been watching our struggle for a long time! And just so you know, we are nearing the month he refers to! That makes this bed worth a whole lot!! 🙂

And I must say that the first night I put Chloe in that bed, zipped it up, and walked out of her room, the peace that flooded over me was so tangible and new that I stopped in the hallway, leaned against the wall, and closed my eyes, relishing in the moment. It seriously took my breath away for a minute. It has been a long time since I felt a peace and a comfort and a confidence that my daughter was going to be safe in her bed. In fact, it had been so long since I had felt that feeling that I honestly did not even remember what it felt like. Actually the last time I experienced that feeling, I probably just so took it for granted that I didn’t even notice the feeling. Or maybe it’s not even a feeling until you’ve experienced the opposite … not sure. But the feeling was crazy awesome!

And I must say happily and excitedly that I have had that feeling every night for the past three and a half weeks. Every night that I’ve put Chloe to bed in The Safety Sleeper, I have left her with an amazing confidence, knowing that she will be safely in her bed until I get her up. It has been truly amazing!


*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 Safety Sleeper and if you purchase a bed, be sure to let Rose know I sent you there. 🙂

To Be Given The Chance

We unfortunately have had several more discouraging meetings with Chloe’s school. Seems we have quite a difference in philosophy.

The school district has special classes for students with disabilities. “The way they do it” is to send students with disabilities down the hall to special classes. Segregated classes. Restricted classes. Classes that don’t teach the full curriculum. Classes in which the students are not expected to learn much … because they aren’t given the opportunity to learn much. Classes in which the students are taught the same basic skills year after year after year.

The school wants to send Chloe down the hall.

Paul and I have a very different philosophy. We desire a much different education for our daughter. While we recognize and realize and accept and embrace Chloe’s disabilities, we want more for her. While we don’t kid ourselves into thinking that Chloe will demonstrate her understanding and knowledge in the same way that the typical students will show theirs, we feel that it would be terrible not to give her the opportunity to learn it all.

“Special” is cute when you’re two years old or five years old. Special is not so cute when you’re ten or twenty-eight or fifty-six. We don’t want Chloe in a special class.

As a speaker at a conference recently said, “When you show me the special ed gas station or the special ed grocery store, then we’ll talk about special ed. Until then, we don’t want to talk about special ed.” This conveys clearly the fact that the real world isn’t special. Sticking a student down the hall in a special class is not going to prepare her for the real world. And guess what? Chloe’s going to graduate and be expected to live in the real world. And that time will be here before we know it!

We want Chloe to be in class with nondisabled kids. We want Chloe to have the opportunity to learn everything all the other 3rd grade students are learning. We may not have any clue how much she is absorbing — how much she is learning — but we want her to have the opportunity to learn it all. We want her exposed to the whole curriculum.

If the other kids are learning about hurricanes, we don’t want her to be down the hall learning functional life skills. How will Chloe ever learn about hurricanes if she isn’t there to learn about it?

We believe it is wrong to assume that Chloe can’t learn what the other 3rd graders are learning. We believe that the safer assumption is to assume that she is learning it and to continue to teach it all to her.

Starting Tuesday morning, the school district will begin to carry-out their plan for Chloe’s education. It is far from what we believe is right for Chloe.

Our hearts are broken, and we are very discouraged.

But we will continue to advocate for Chloe’s rights to receive the education that she deserves.

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