Posts Tagged ‘Autism’

The Detective

Out of sorts.magnifying glass

Emotional.

Just not right.

Overly dramatic.

Controlling/ bossy.

Out of her groove.

Not herself.

In a mood.

Goofy. <smh>

These are all phrases that I and/or Chloe’s therapist and/or Chloe’s Mimi said about her during her therapy session yesterday afternoon. None of us were frustrated with her. None of us were angry or short-tempered.

But we missed it.

All 3 of us love her and know her well. All 3 of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in nearly a month?

We knew it was something. And we all gave her time and we listened. We all comforted and validated.

But we missed it.

Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food and more food and more food — much like an infant with tummy trouble. You know… the baby’s tummy feels awful, and he assumes it is because he is starving. Or at least he thinks more milk will help soothe his belly ache. Well, that’s what Chloe was doing so I knew it was her belly.

I got her ready for bed and put her to bed so she could sleep it off.

Then I got a text from her aide at school that she was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move.

Interesting. I immediately knew that Chloe had the same virus. She was feeling the same way. She didn’t have an attitude at therapy; it just hurt to move. She wasn’t averse to putting her feet on the ground to walk as much as she just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. She didn’t lay back and close her eyes right in the middle of therapy to show that she was in control or to make a statement; she was literally glad to be still and close her eyes for a minute. She wasn’t making up the pain in her shoulder that she was crying about. And she wasn’t forgetting which shoulder was “hurting;” they were both hurting — she was hurting all over.

Poor baby.

We are all 3 lucky she didn’t just smack us across the face for not leaving her alone and letting her go to bed.

detectiveLife with a mostly nonverbal child is challenging. It’s guess-work. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guess-work at best. I am a constant detective, looking for clues. And I think I’m a darn good one most days. But it’s still guess-work, putting clues together and trying to make them make sense.

I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling (and probably how Chloe, too, was feeling), her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death. I guess I’ll up my sympathy and carry on. ❤

Friendship

I recently watched a video about a boy with Down syndrome who was included into a general education setting. The video gave a nutshell picture of the successes and the challenges of such a placement for this student.

I cried at the lunchroom scene the film included. The student, who had some “behaviors” that were worsening in 6th grade sat at the lunch table with a group of other boys. Without warning and quick-as-lightning, the boy reached over and grabbed another student’s roll right off his tray. The breadless boy and another student demanded the return of the dinner roll, telling the boy that “you can’t take someone else’s food!” But the boy held the roll tightly in his fist and refused its return, ignoring his friends’ pleas.

Finally, the breadless boy and all of the other boys got up and moved together to another table, shaking their heads in disgust and frustration. The boy was left at the table all alone with his stolen piece of bread still clenched tightly.

It was heartbreaking to watch. The boys tried to reason with the bread thief; they tried to be patient; they reminded him of the social rules. But in the end, they got frustrated and left.

And you can’t blame them. They are kids. Hungry kids. And their rights had been violated, basically. No, you cannot blame those boys at all. I mean, who knows what else the boy may snatch before they have a chance to eat it. And who knows how many items he’s snatched from them over the years while he struggled to control his impulses. And even the best of friends, the most patient of saints, has his limitations and feelings.

I don’t exaggerate when I say that only one day later I got word from school that Chloe had snatched her BFF’s cake pop at lunch! Yes! Seriously. Snatched it quick-as-lightning right from her lunch bag. And… and… and licked it!!! I’m not kidding! Tell me it isn’t so!

The movie played out in my head: all of the girls getting up, angry, and leaving Chloe at the table to finish her lunch alone.

I’m so grateful to report with a very full heart that Chloe’s BFF simply snatched the cake pop back, wiped it off, and ate it. Because that’s what BFFs do. And because Chloe’s BFF responded like she did, no one got up and left, and no one got angry. (Although I’m guessing Chloe was the recipient of several lectures from her friends about behaving appropriately and respecting others.)

But you can be sure that I’m terrified for the day Chloe’s BFFs run out of patience. I am still very much aware of that possibility. And it makes me sad.

But today: grateful. Grateful for friendship.

Eve

Today at church the children heard the story of Adam and Eve. The story included the apple, the serpent, the fig leaves, and the Garden of Eden.

For the game that accompanied the lesson, the kids dressed each other up as Adam and Eve.

Chloe was Eve for her team. The girls ran around the room, gathering supplies, and quickly decorated Chloe. Within moments she was completely decked out in Eve garb. She wore green crepe paper, a wreath of leaves on her head, and … a cool pair of shades.

This, folks, is what inclusion looks like at church. 🙂

photo

And now, for the rest of the story….

When it was time for the Adam and Eve game, Chloe got my attention and let me know she wanted to play the game. It’s not uncommon for the Sunday morning game to be a running around relay game that she has a hard time participating in. So this time she wanted to make it clear that she did actually want to play.

I happened to be the adult in Chloe’s group for this game so I informed a couple of the girls who were sorta taking charge that Chloe wanted to play this game and be Adam or Eve. They both looked at me like perhaps they didn’t speak English, but knowing that isn’t the case I didn’t restate my message or check for understanding — I thought the request was pretty clear and that it was a fair request from Chloe since she can’t really actively participate in a lot of the activities.

Well, lo and behold, when the game leader went around the circle and asked who from each group would be Adam and who would be Eve, these two girls announced that the two of them would be Adam and Eve. Hmmmmmmm. I guess I should have checked for understanding after all. 😉

I very casually reminded the two of them that Chloe would like to either be Adam or Eve and asked them to decide which of them would give Chloe their role. This time they looked at each other like maybe they didn’t speak English and sorta halfway pointed at each other silently. I gave them about a minute to work it out between them in whatever language they might choose, and then I asked them which role Chloe would be playing in the game. Again, I got confused looks that I finally determined were not looks of not knowing the language but were simply looks of total human selfishness (don’t hate! — we all struggle with it!!) that were just unwilling to budge for another person. I gave them one last opportunity to redeem themselves by giving an encouraging, knowing cue: “Girls, which of you will make a kind choice and be a good friend?”

After no action from either girl besides continued confused, stuck expressions, I let them both know that they were both relieved of their duty of Adam and Eve and that instead Chloe would be Eve, and a little boy on the team would be Adam.

Now before you go calling me a meanie, know that I would’ve done the exact same thing for any child if I saw a rare opportunity for him/her to fully participate. And also know that if I were the parent of one of the confused girls, I would want another adult to step in and help train my child’s heart in kindness and compassion and unselfishness. So no hard feelings, ok? It’s just part of children’s ministry. 🙂

I tell this story to illustrate the fact that sometimes inclusion is natural and friendship is natural and that amazingly cool things just happen in the hearts of children sometimes. But other times, children need guidance, and inclusion has to be guided and staged. But guess what? If done correctly, both types result in inclusion. And guess what else? My kid is blessed in both instances (if done with dignity and taste). And the other kids benefit, too, because which of us could not use a little heart training? Which of us couldn’t use a little “unsticking” when our hearts are stuck in selfish gear?

In the end, Chloe enjoyed getting “decorated” as Eve, and the other girls enjoyed running off, gathering supplies, and decorating Chloe. It was a win-win.

All in a Day’s Work

How do you prioritize when everything is ultimately important? when everything is #1?blue #1

How do you choose to spend your time when the whole list consists of urgent items?

Do you choose to breathe first or to make your heart beat first? They’re both critical.

That’s how I feel with trying to prioritize what to focus on with Chloe. How do I spend my time and energy when the needs are all so great? Where do I start? Where do I begin? Where do I focus?

Communication is #1 because everything else depends on it. If Chloe doesn’t have a way to communicate her wants and needs…if she can’t relate and give her opinion then what??

But her legs working enough to walk across the room is #1. Remaining functional enough to be on her feet when she wants to be is vital. It’s a skill and ability that we are fighting to keep. The battle against her tightening, weakening legs is one we have to fight with gusto.

black #1Her performing and succeeding in school is also #1. If she’s not successful in school, then her teachers won’t take her seriously. If we don’t work to find ways for Chloe to express what she knows…if we don’t empower her with the ability to express her knowledge, then how…how…? So this ever-growing pile of homework is top priority.

But what about practicing and exceeding in cello? It’s imperative that she grow her talent. It will allow her to be part of a “team” in orchestra in junior and high school. She loves it; she’s good at it. Her playing music speaks to people …speaks to her.

Independence and growing in work/chores/responsibility has to be #1. Self-feeding, personal hygiene skills — It’s those huge skills that will lead her to independence in life. Those skills will pave the way for self-care later in life. It’s ultra important for Chloe’s success.

Encouraging and growing her friendships should be a high priority. She has friends who love and enjoy her; inviting friends over and helping those relationships grow are key. Friendships will deter loneliness.

I. Can’t. Do It. All. There are 24 hours in the day.

What do you do when they’re all a #1 priority?

 

Being Known and Being Missed

IMG_5296As we entered the building, there were greetings and cheers.

“Hi, Chloe!”

“Chloe!”

“Yay! There’s Chloe!”

Everyone was happy to see her. And she ate it all up. She waved at her friends and her fans alike as we entered into the cheer gym for the first day of practice for a new season.

What a great feeling to enter a place and be greeted by name by friends who love you and have missed you.

I’m so glad that Chloe has that feeling of acceptance and friendship in several different settings. At school each morning, she’s greeted energetically by sweet friends. At church, folks are glad to see her and greet her by name. And at cheerleading each week, when she enters, the room erupts with excitement.

Chloe over the years has gained confidence and awareness and the mutual respect of greeting others (usually, anyway!). She will look their way or wave or say Hi.

Friendship. Relationships. Being known. Being appreciated. Being missed when you’re not there. Being loved. Being seen and noticed.

Yes, Chloe matters to people. And nearly as exciting: those people matter to Chloe. J

Never Give Up

My girl is persistent. Thankfully.

She tries to tell me things. I nearly always know what she’s saying. But now and then, I just miss it.

Sometimes she gives me more than one chance to get her message. Other times, if I miss it, then too bad so sad for me.

Chloe, age 12 (and a half!), is mostly nonverbal. But she is quite a communicator. She gets her point across usually — especially if you’re “listening.”

Recently Chloe tried to tell me something for about 7 days in a row. Each time, I responded in a way that was NOT satisfying to her. But she was determined for me to understand…because she would greatly benefit from my understanding.

You see, Chloe has a love affair with stuffed dogs, especially dogs that have batteries and make noise. She owns a half dozen varieties of the My Pal Scout dog. She loves them and often gets them all going at one time, making them say their  phrases together in unison. She also often googles “My Pal Scout” on YouTube and watches reviews of Scout and his female counterpart, Violet (of whom she also has several varieties).

For days, Chloe would squeeze the belly of her My Pal Scout and vocalize to get my attention. Each time I responded with, “Scout’s belly doesn’t do anything. You just push his 2 hands and his 2 feet.”

And each time she would squeeze his belly again, not satisfied with my answer.

Then she would try again later that day or the next day. Each time I answered that Scout’s belly isn’t a button.

The day that Chloe said she wanted to go shopping with 2 of her cousins and me, I knew she had something up her sleeve because she is not one to volunteer to run errands. She much prefers the privacy of her own bedroom to going out and about. She grabbed her Scout as we headed out to the car.

Once in the car, she vocalized to get my attention and proceeded to squeeze Scout’s belly. I responded with my usual, “Scout’s belly doesn’t do anything. You have to squeeze his hands or his feet.” This time I added, “Some toys have bellies that you squeeze, but Scout just has his hands and his feet.”

Chloe then made a heart sign over her own belly and looked at me expectantly. This caused me to focus in a little harder.

“Is there a Scout with a heart?” I asked.

“Yes,” she nodded.

It was then I realized that Chloe must have seen a later-version of Scout on a YouTube toy review that has a belly that you push. Or maybe a heart that lights up or something. “And you want to buy it at the store?” I asked her.

“Yes,” she nodded again, surely relieved that her mama was finally catching on.

“And THAT’s why you wanted to come shopping with us?” I smiled at her.

“Yes,” she nodded triumphantly.

I was glad I had figured out what she had been saying, but I doubted the accuracy of our communication. The parts I had understood were a belly to push and a heart, but LeapFrog wouldn’t put hearts on the belly of a dog. Maybe you push the belly and the heart lights up or something?? I wasn’t sure. But she had clearly placed the heart sign on her own belly. She was probably not paying attention to what she was doing.

A bit later, we arrived at the LeapFrog aisle of Toys ‘R Us and lo and behold right there front and center was a Scout dog with hearts on his belly. She grabbed Scout and pressed his belly. He immediately sang a happy song in response.

A very happy Chloe held Scout tight as we made our way to the front of the store to check out. She had seen this very Scout on YouTube and had very clearly shown me that he had a belly that you push and that belly had hearts on it!

And now a happy girl owned it!

In case you ever wonder, just know that persistence pays off. As does patience. As does shopping with the girls every now and then.

Welcome to the family, New Scout!

Fight

Chloe and I had our first screaming fight today.

Well, she was screaming. I was watching.

And, ok, it wasn’t the first, but it was the loudest to date.

She’s not feeling well. She had a cold this weekend and stayed home from school today to recover. She sorta went back and forth from feeling good and trying to dance to just feeling crummy and lying down.

Towards the end of the day when we were returning from picking up the boys from school, she was tired. And grumpy. (I’m not talking about her behind her back or saying anything she’s unaware of — she admitted to being grumpy. I mean, who could’ve denied it after the way she acted….)

She had asked me if she could have a turn with my phone. On the way to the boys’ school, I told her she had to wait until we got the boys just in case one of them called me for some reason. I needed to keep my phone.

Well, as sometimes happens, I forgot to let her have her turn with my phone after we got the boys.

So as we pulled in the driveway back home, she quite nastily demanded the use of my phone. I turned around and gave her the look. But the look didn’t have an effect on her. She just screamed again, “Phone! Phone! Phone! Phone! Phone!” signing phone as she swung her head back and forth.

I just watched in amazement, which was not the response she was looking for. So she took it up a notch. She slapped her arms to her sides and let out a holler.

My eyes just got bigger as I watched her from the front seat while the two of us sat in the van in the garage.

You have to understand that this girl went a big chunk of years showing no emotion; and even more years than that feeling the emotion but not knowing how to express it. But this screaming fit I was witnessing was an example of very well-expressed emotion. And it actually thrills me inside. When you have a child who is stuck in their body, unable to express themselves, and then they learn to emerge and express some emotion and communicate their feelings, it is truly amazing to watch.

That’s what was happening.

“Wow!” I said. “Are you being silly or are you grumpy?” I asked her, pretty surprised at her little show.

“No!!!” she screamed.

I asked again, “No, seriously. Are you grumpy?”

She growled and signed grumpy.

I strongly agreed with her that she was, indeed, grumpy and told her she could have a turn with my phone when we got in the house. But the promise of pleasure deferred wasn’t good enough for Little Miss Grumpy. Sitting in her carseat, she slapped her arms, threw her head all about, and screamed in a mocking way all sorts of nasty words, I’m sure. I just stood out of arms’ reach and watched her.

Knowing it usually helps to put words to her emotion, I explained the situation. “Ok! You’ve made your point! You’re frustrated that you had to wait, and I made it worse by talking to you about it, and now you’re really mad. Will you stop already??”

When she assured me that she was done with her fit, I moved in to help her get out of the car. But she wasn’t done with me. Her arms went to flapping, and her words went to flying, and I went to dodging and stifling laughter. She was really in a tizzy.

When I finally thought I was safe from the fit, I succeeded in helping her from the car and back into the house where she got a turn with the phone after a heart-felt apology.

What??!! Giving into her after throwing such a nasty fit?? Really. I mean, seriously, how could anyone turn down her request after that 5-star performance!?

photo credit: www.empoweringparents.com
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