Archive for June, 2012

Fish … Seriously!

It was a couple of years ago that Zippy discovered he likes the Filet o’ Fish sandwich at McDonalds. He tried a bite of it one day when I ordered it for myself — it’s my favorite at McDs. He decided then that he liked it, and it’s been his favorite since then, too.

He since then has tried fish sandwiches at several other restaurants — some of which he liked; others he really didn’t. But fish sandwiches have remained a favorite.

Also, from time to time, I cook fish filets or fish sticks for an easy dinner. He loves those, too, and sometimes requests them.

This past week I got some fish filets to cook for dinner. The boys had theirs on a hamburger bun, making it a homemade Filet o’ Fish. We got in a deep family discussion about the difference in calling a sandwich a fish filet vs. a Filet o’ Fish. It was a little bit of an emotional conversation for Zippy as he seemed to take it personally and wanted to call all fish sandwiches a Filet 0′ Fish, but others at the table were insisting that that was a trademarked name and that other fish sandwiches shouldn’t be called by that name.

When Paul tried to explain the situation a little more clearly by starting at the very beginning … like as far back as a fish in the pond … Zippy was in for quite a surprise.

Fish!!?? I’m eating fish??!!” he exclaimed with his mouth full of his fish sandwich. “This is a real fish??”

We all had quite a laugh at his expense as the reality sunk in of all the fish he had unknowingly consumed the last couple of years.

“Yes, you’re eating a real fish. And all those other fish sandwiches were real fish, too!” We had a good time explaining.

Zippy was imediately done with his dinner. We’re still not sure if he’ll ever order another Filet o’ Fish or fish filet again!

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When Inclusion Works

As you know by now, I really believe in inclusion. I think inclusion is nearly always best! I agree that there are times — very much the minority, in my opinion — when full inclusion is not what’s best for an individual with disabilities. But most of the time, I am a strong proponent for inclusion. I think it’s best for the individuals who live life with a disability and best for the rest of the world — sometimes especially beneficial for those without a disability. It is a win-win, in my opinion, most of the time. (No secrets here … you already knew that about me!)

I have also mentioned before the ironic and terrible issue of people with disabilities oftentimes not being welcomed in church. I know it sounds awful, but churches are not real open to someone who may disrupt the service or the flow or the peace of their Sunday morning for the most part. Most families who have someone who has a disability just do not go to church. Crazy, right?

Thankfully, my church is the exception. (And again, I think the number of churches open to those who have disabilities is growing. Thank God!) We have had a great experience with our church as a whole and with the children’s department at our church.

The people at our church know Chloe and accept who she is and how she operates. They appreciate her. They talk to her. They let her hug them or ignore them, whichever Chloe happens to do on any particular day. They enjoy it when she dances in church. And they are okay with her choosing a lap to crawl up into.

In the children’s ministry area, each Sunday, there is an older elementary or junior high girl assigned to Chloe. That helper is to keep her safe and help her stay on task during the service. That helper sits by Chloe during the lesson and helps her participate. Oftentimes, it’s that helper who dances with Chloe during worship. It’s that helper who redirects Chloe when she needs it. And it’s that helper who alerts an adult if Chloe has a need that requires an adult.

Mostly, the people at my church aren’t surprised by Chloe. Mostly, no one is uncomfortable with Chloe. Chloe fits in and people move over and allow her space to participate.

The amazing difference that Chloe’s being included in this part of society is making really came to fruition one Sunday when a family visited our church for the first time. This family had a daughter who was close in age to Chloe. While their daughter had a different diagnosis than Chloe, she presented in many similar ways to Chloe. Their daughter is mostly nonverbal; she needs support when standing and walking; she might tend to wander if not reigned in a little. By the time we got to church that Sunday, a couple of the older girls had stepped in to be this new girl’s helpers. These helpers weren’t scared of this new girl; these helpers didn’t have to stare or laugh at this new little girl; the adult volunteers weren’t at a loss of how to minister to this family. It was very easy and very natural for our church to step in and support this new little girl and her family.

And it was all because of including Chloe. Since they have been including Chloe so beautifully and successfully, it was natural and easy for them to reach out to this new family.

Knowing how going to church can be with a child with disabilities, I am sure that this new family was thrilled and surprised and blessed that their daughter was so easily accepted and cared for.

And it was one of the happiest days of my life. Really.

And it reminds me that the more our children are out and about, the more society will accept them. The reason people get nervous around folks who have a disability? It’s because they’re not used to being around folks with disabilities. Plain and simple.

But if they’re regularly around folks with disabilities? Well, then, it’s no big deal.

Will effectively ministering to all of these families who have disabilities take time and practice? Will it take lots of support and volunteers? Yes, it will.

But I’ve experienced it. And it works.

Praise God! Let all families who have a child with a disability praise God, too, if they choose to!

(BTW, I used the example of a child with a disability in this post, but another huge hole in the church is accepting and ministering to adults with disabilities. The same sort of plan would work for that population, too. Again, the more they are out in the community, the more the community gets accustomed to supporting them. It could prove to be a lovely circle of effects!)

{Do you have stories of how churches have done well or not done so well in this area? I’d love to hear about it!}

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!

 

Different

Transracial adoption is tricky.

First, the mama has to learn to care for skin and hair that is different than her own. I was pretty lucky in this department in that Zippy is a boy — African American boy hair is much simpler for this mama to figure out than a girl’s would’ve been. But still, learning to care for his skin has been tricky. We have spent oodles of bucks buying different kinds of lotions, conditioners, and creams over the years. (BTW, we’ve landed on the best yet: Melaleuca’s Renew lotion. Zippy’s skin loves it! No itchy bumpies that end up bleeding and scarring! Love!)

I love Zippy’s skin. And, in fact, I’m oftentimes envious of his dark skin. The kid looks beautiful in every single thing I put on him. Every color’s a great color for him! When you’re a pasty-white mama like me, you have to pick and choose what colors to wear because so many of them look flat-out yucky.

Also, and far bigger than learning to care for skin and hair, there is the constant feeling of just being different. Just when you think no one in the family notices, someone says something that reminds you that one of us looks (outwardly) different than the rest. It is usually a low-impact, doesn’t-really-matter-in-the-whole-scheme-of-things conversation, but still I think those thoughts and conversations have to add up eventually to at least a few big ol’ pity parties for the one who’s different. Ya know?

For example, did you know that rolling your tongue is a genetic trait?? Yes. The only way you can roll your tongue like the model to the left is if one of your parents can roll theirs. And who could’ve figured that an 11-year-old boy would see tongue rolling as a great talent and would be sorely disappointed to learn that he was the only one in the household who couldn’t do it. His disappointment certainly increased when he saw that “even Chloe can do it!!” Yes, being different is hard and sometimes disappointing.

Apparently the length of your tongue is genetic, too. I promise a photo at some point, but just suffice it to say that Paul, Elliot, and Chloe can all touch their noses with their tongues and still have some tongue to spare! I think Paul’s family tree has a giraffe up there somewhere because it is a common trait in his family. Seriously. But Zippy has a short tongue and feels totally left out. His relief is that at least I am left out of that amazing trait, too. (I am absolutely loving that photo to the right!! LOL!)

And the most recent disappointment for Zippy being different: his curly hair won’t stick up with the static of a balloon. Now that’s a big disappointment for a boy who loves to laugh and loves to make other people laugh. Thankfully he had quite a ball rubbing all of our heads and cracking up at the sticking-up hair. He wondered if someday when he straightened his hair if it would stick up nice and tall like Chloe’s. I told him I thought not. And we set out looking for more odd tricks that he can do!

For the record, Zippy does the best cartwheel in the family — by a long shot. He does the best flips– frontward and backward! And I think he has the best and most contagious laugh of the family. He can fit the most marshmallows in his mouth; he can fit the most pizza in his mouth. He can pretty much fit an entire plateful of dinner in his mouth at one time, and none of the rest of us can claim to do that with any success. He can surely be proud of those things! 🙂

Another good difference that Zippy has found: he very much prefers the color of his own earwax compared to the color of Elliot’s. Ha! What can I say? Boys will be boys, and brothers will be brothers…

Seen and Heard!

I don’t know about where you’re from, but I’m guessing it’s very much like where I’m from.

Here, as a general rule, folks with disabilities are not seen nor heard.

As a general rule, if you have a disability, then you’re sent down the hall to a special room. You’re hidden. You don’t experience life with the others.

As a general rule, if you want to participate in sports or other recreation, then you do it with other people with disabilities.

And as a general rule, if you want to go to church … well, then you’re up a creek since a lot of churches won’t have you.

True? Ummm, unfortunately, yes, it’s true.

Do you realize that the average Young Jo Neighborhood Kid has no clue how to talk to someone with developmental disabilities? Do you realize that the average Young Jo Neighborhood Kid has no interaction whatsoever with anyone with a disability? No wonder our kids get stared at. No wonder our kids have no friends. No wonder life feels so isolating.

Again, I hope some of you will leave a comment saying that’s not how it is where you live. And I think … hopefully … that the tide is slowly turning. I think … I hope that more individuals with disabilities are being seen and heard. I hope that we as a society are moving to a more inclusive society. I sure hope so.

The fact is that if we continue to hide this “special population” from society, then society never learns to relate them. If we continue to send these students down the hall to their special class, then kids never learn how to play with them or support them. If we continue to segregate people with disabilities, then they will continue to stick out like sore thumbs when we take them to the mall or to the movie.

But you know what? The opposite is also true!

The more we “include” our children in classes and sports with nondisabled children, the more those children learn to relate to our kids. The less our children stand out.

Wouldn’t it be something for it to be the norm for a child with disabilities to be welcomed without effort or thought into every recreational circle? Wouldn’t it be something for it just to be totally normal for all kids to support, play with, and be friends with several children who are living life with a disability?

I want Chloe to experience life like that. I want my boys to experience life like that outside the 4 walls of our house. I want my boys to be in class with students who need their support. I want it to be their norm. I want it to help form who they are. I want it to make them tolerant, patient, supportive adults, coworkers, bosses.

It’s not going to happen if we as parents to children who have a disability continue to take them to “special” classes. It’s not going to happen as long as we continue to place our children in group homes with like-disabled people. It’s not going to happen as long as we continue to segregate our kids. It’s not going to happen as long as we continue to keep our children separate from mainstream society under the guise and excuse of protecting them.

Keeping our kids in a cage or under a wing or behind a locked door or under our noses is not an effective way of protecting them from the world that in reality will need to be supporting them some day.

Ok, wow. I am way up tall on a soapbox here, and I need to step down and refocus and calm down. 😉

Yes, I feel strongly about it. I feel strongly about my precious children being a part of life and not missing out on life. I feel very strongly about it.

I want my girl to be seen and heard. I hate it when she sticks out like a sore thumb; I know it’s only because our society hides others “like her,” and I really want that to change. I want to be a part of that change.

I want my boys to be seen and heard. I want them to see and hear and even listen to individuals who live life with a disability. I want it to be their norm.

Yes. Seen and Heard. We all have the right to be seen and heard.

<deep heavy breath>

Ok, I’m done here for now.

{Let me hear what you think. Feel free to tell me I’m wrong. Feel free to kick that box out from under me. Feel free to cheer or jeer. But just remember that I’m probably not done talking about it here … that’s the cool thing about it being my blog! ;)}

Summer Jobs

It is summertime! Sweet summertime!

So far, after one week of summer, the kids and I have done a lot of nothing. NOTHING. Love it!
We have slept late, watched TV, played games on our iPods/iPhones, played board games, watched movies, and stayed up late. What a life!

But now the responsible side of motherhood must prevail and must insist upon some responsibility in the kids. Chores, education, good deeds, and child labor must kick in.

So the plan begins soon.

I started by having the boys make a list of things they think would be “good things to do” either weekly or daily. Elliot included exercise, reading, and room cleaning on his list. Zippy’s list read, “play video games, watch TV, watch movies, play on my iPod, play with friends, spend time with family.” He watched my face intently as I struggled not to scream with laughter; and I responded with a kind smile at the “spend time with family” part — just like he wanted me to. Guess I should add to my list: “help kids with their lists.”

My ideas for things for them to do (some daily, some weekly, etc.)are as follows: read, spend time with God, read to/play with Chloe, exercise, throw some math practice in there now and then, some household chores, and things are good.

This year, too, I’m adding for the boys to write a letter every week. Zippy doesn’t know about the letters yet; Elliot is less than thrilled. “To whom??”  “Why??”  “Do we really have to send it??”  I just think maybe sending a letter each week to a friend, a cousin, or whatever would be a great practice for the summer. Maybe, just maybe, they’ll get a letter or two back and they can experience the fun of getting snail mail, which doesn’t happen much in this day and time. I’m choosing to disagree with Elliot’s very good arguments that email is faster, easier, more efficient …. I’m choosing to ignore his complaining that writing and sending letters is “the most embarrassing thing in the world!” I maintain that it’s still a good goal and a nice thing to do. So there. I will have to just ignore the wailing and complaining each week as I stand over them forcing them to write a few sentences. (I’m looking forward to it.)

I think Elliot is also going to learn how to mow the lawn and do his laundry this year. So those can be  his jobs, too. (I just showed him how to put gas in the car recently so he’ll be able to do that on his own soon, too. Sweet!) If I don’t get busy on training these boys, I will have a couple of very disappointed young wives in about 15 years!

Chloe’s jobs will include cleaning her room, helping in the kitchen, doing some school work, reading, stretching (and therapy), walking around the block, and emptying the trash. We are also stepping up some of her self-help skills like dressing herself, feeding herself, etc.

So we have some grand plans for summer. It will be nice to get into our summer system.

Now, don’t get me wrong! I love summer! And we will keep on playing! We will swim and play and watch movies and go to Six Flags and sleep late and stay up late and play games and play and play and play and rest and rest and rest! It’s what summer’s all about, right? Absolutely!

{How about you? How do you work your summers? What summer chores or schedule do you begin with your children? And specifically, what jobs do you assign to your child with disabilities? Also, what do YOU think about the letter writing? Can’t wait to hear your ideas!}

M.I.A.

Hi. I’ve been gone a while. <sheepish grin>

There are just times when the mama decides it’s not a good time to air the family’s laundry: good or bad. And that’s what happened. I’ll be able to fill you in somewhat soon. But for now, let me just say that it’s good to be back, and I missed you! 😉

We are deep into summer — you can be glad that you got to miss out on my whining about all the end-of-year projects my kids had and all the award ceremonies and recitals and concerts that just about push me over the edge every year. The last few weeks of school are brutal schedule-wise!! But oh, how I love to be done with stuff and for summer to come in all it’s glory!

I LOVE to have my kids home for the summer! I love to play with them! I love to hear their voices in the other room! I love that I’m the one they are telling their stories to! I love spending time with them day and night. I love making memories with them! LOVE!!

The problem is, I sorta get in this vacation mode and forget that we still have responsibilities … like watering the lawn, fixing dinner, doing laundry, going to appointments, cleaning house … Yes, I must fight against the total vacation mode idea! Life must go on even with the fun and games of summer!

So I’m back. It’s summer. And I’m happy.

Hope you are, too! 🙂

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