Autism and communication misfires.

by Jennifer Dyer

This morning Rachel and I got off to a rough start. Traveling this past weekend and having Monday off from school meant our routine was shot, our lives out of order.

I couldn’t find her backpack. Though I cleaned out her water bottle, I left it sitting on the counter. I never even looked for her iPad, and it is the details that matter to Rach. But I knew none of this on the way to school. My mind was still focused on everything left undone at home. Plus, some of the scar tissue from my cancer surgery decided this was a good morning to light on fire. I could not think straight.

On the way to school, Rach kept trying to tell me something. Her language is getting better. She has the receptive language/understanding of a child about three years old, which is encouraging. Expressively, she struggles because her apraxia on top of the autism makes her communication garbled and unintelligible, even her sign language. But she is trying and that is HUGE!

She was making a sign from the backseat, though, that I couldn’t understand. I kept guessing. Both of us had pinched, flushed faces and tense muscles by the time we got to school. I steered Rachel toward her classroom while she gestured and made verbal approximations of “Buh” and “Shuh,” but those mean so many things!

My jumbled mind clawed through everything that might possibly be wrong or that she wanted. What was wrong with me that I couldn’t understand my own child? I’m a speech-language pathologist! If anything, I should be able to do this! But I can’t. I just. Keep. Failing.

When we entered the class, her teacher asked me what Rachel was trying to say.

I wanted to scream, to pull out my hair, to hide under my bed. I don’t know!

Rach looked at me and understanding dawned. Mommy failed, again, to get it. Her eyes teared up. She put her hands over them, pressing away her tears.

My gut twisted. Above all else, her pain and frustration rips and shreds at my soul. It’s not fair. I HATE that communication is so hard for her. I can’t stand that look of disappointment because it breaks me inside. I feel like a failure when I see it, but worse, I feel like I failed HER.

Autism is just. Plain. Mean.

I found her missing items and took them up to school, but I still don’t know what she was trying to tell me. And that, above all else, makes me press my hands against my own eyes to hold in the tears.

Read More

Life adapted–Special needs prom

By Jennifer Dyer

If you were invited to a special needs prom, what would you expect to see? Quiet kids, plain snacks, maybe some sedate music, perhaps parents talking?

Then you haven’t seen the special needs prom held in my community.

Nine years ago, a mom decided she wanted to give her son a prom experience, but knew the school prom would be too overwhelming. She put together some ideas and invited her son’s special Olympics team mates.

Since then, the prom has grown to include all the kids with special needs in our community over age 13. Even after the kids graduate, they’re still invited.

The week before the event, a team of volunteers converge on the church’s gym and transform it into a wonderland. This year it was a candy landscape of 3-foot tall gingerbread men, frosted gingerbread houses, giant lollipops, basketball-sized candies, and more.

Add onto that, tables laden with treats, many of them made with special dietary needs in mind. A DJ leads everyone to laugh, hug, dance, cheer, and dance some more.

My favorite moment is when the attendees line up outside the main doors and are introduced like royalty. When they enter the room, dear friends yell, cheer, and greet each other with huge hugs. The crowd of people, those who would be called special and everyone else, mingle together in one sweet group.

Although I was not able to attend this year, Rachel went with hubby. I don’t think she stopped moving and squealing.

 

 

 

 

 

 

 

 

For months, the community here talks about last year’s prom. When I see some of the people who attend the prom at the store, they stop and hug me, maybe mention something from the last event. The other half of the year, people look forward to next year’s prom. What will the decorations look like? What will they wear?

And it all started with a mom’s desire to make something special for her son. Other talented moms and volunteers have joined her along the way.

Events like this happen with scores of people in the background, but it started with a small spark of an idea, a mom’s heart to do something special.

I hope, in the years to come, other moms will start these kinds of events in their communities and that churches will get behind them, offering space, time, volunteers, and prayer. That people will gather to enjoy a special night with a truly special group of people.

Read More

Kids, romance and autism. How do those mesh? I’ll tell you…

by Jennifer Dyer

Our MomLife Today editor recently asked us, How do you romance your children?

I thought about her question for days. I had no idea. Sure, I spend time with Rachel, I tickle her, and I buy her glue to create masterpieces of construction paper…

But what about her soul? I’ve had a hard time getting to know Rachel, in the sense that many of us do others. Idea sharing, conversing, arguing… All of those things are hindered by the autism and apraxia which hold her mind captive in so many harsh manners.

But then I realized something huge…

Continue reading about it here on MomLife Today.

Read More

The styrofoam fiasco.

20120921-170728.jpg

The other day I bought some cute picture frames. They came in a box packed with styrofoam. After I put up the frames, I procrastinated getting rid of the box.

Big mistake!

Later I found it in the closet under the stairs, in teeny tiny little pieces. Instead of a few sheets of styrofoam, I had a two feet deep pile of little white, fluffy, staticky pebbles.

I walked away. For a few days. How was I going to clean it up?

I finally tackled the problem with my trusty Kirby. The little pieces sucked into the vortex of my friend, but I noticed there was a shower of foam blowing onto the other side of the closet.

Hmm. Perhaps the motor was blowing them around? I vacuumed some more… More snow showers, this time into the living room.

I finally turned the vacuum around to check out the problem. And??

That’s right, I had LEFT off the bag. Yup. I’d changed bags the other day, but left off the replacing part! Eek.

Lol! I sorta wanted to cry, but it wasn’t worth it. I had to laugh at myself. Perhaps I deserve an award for housekeeping. Hope it’s chocolate!

Read More

Why can’t I be … more?

Some days I feel like this pile of laundry. A tangled mess of things to do that I can’t seem to get done. Even when I look at my blog I think, “Other bloggers update all the time. What is wrong with me?”

Do you ever feel that way?

As I take a step back I understand I can’t do it all. No one can. I have to make priorities, and sometimes my season of life dictates what those priorities and accomplishments will be. Motherhood and caring for a special needs child are my current season. That means other things sometimes don’t happen. And you know what? That’s OK.

In fact, I have to end this because Rachel is needing something. I wish I could be with you all more! Maybe that will be my next season of life, yes?

What about you? Do you ever feel this way? Do you give yourself permission to NOT do it all? What do you let go?

Read More

Spaghetti sauce all over my feet.

by Jennifer DyerSpaghetti Sauce

It’s Monday. As usual, I headed to the grocery store after dropping the kids off at school. While checking out, however, I made a mess. A huge mess. I’m not sure what happened, but just as I tried to put a jar of spaghetti sauce on the counter, I dropped it.

Time slowed. The jar bounced off the conveyor belt and tumbled three times. I watched, frozen, because I knew I couldn’t catch it. The lid hit the ground first with a clang then the glass shattered. Red goo and glass danced in the air then spattered the ground, my feet, and the nearby display stand.

I wanted to cry. I glanced behind me, so thankful no one was waiting. My eyes met the cashier’s. I waited for some sort of irritation. “I’m so sorry,” I said.

“Are you all right, honey?” she asked.

“Yes, I just made such a huge mess. I’m so sorry.” I blubbered on, promising the pay for the mess, and looking around for something to use to clean, but the only thing in my purse that might even start to pick up a mound of sauce was a Target receipt.

“Don’t you worry about that one bit, honey,” she told me. “You just let us handle it. I don’t want you cutting yourself.”

We went back and forth. I kept trying to figure out how to clean up her mess. She insisted that I couldn’t and reassured me that it was all right. “At least it smells nice,” she said. She chatted on about various other spills they had experienced recently. Instead of leaving her presence in tears of shame, I walked out with a grateful heart and no glass cuts on my hands.

My mind went back to the last time Rachel had shattered a glass jar in the kitchen. She tries so hard to be big and to figure out the way the world works, but she makes mistakes all the time. Worse, she can’t communicate what she was thinking and why. After an accident she often hides in a closet.

I wonder if I handle her mistakes the same way this lady at Kroger handled mine…?

Furthermore, I can’t help but reflect on the grace the Kroger checker showed me and think about Jesus. No one is perfect. All of us have some sort of spaghetti sauce mess on our feet, yet through Jesus’ death He says something similar to what that lady said to me: “No, honey, don’t you worry about this. I got this.”

May your messes be full of grace, my friends!

Read More

Resting in my imperfections.

by Jennifer Dyer

On my way out the door, I gave myself a final perusal in the mirror. I smiled at the reflection. “You look pretty good. I’m surprised people don’t think you and eldest (who is only nine) are sisters…” Seeing my wedding ring on the counter, I walked back to get it an took another mirror glance, this time from up close.

Hmm. I aged ten years, just from walking to the mirror. Little laugh lines spread around my eyes. Age spots taunted me from my cheeks. And my lack of talent with an eye liner? Quite apparent. I stuck my tongue out at the reflection. “I liked you better from back there.”

As my eyes found more imperfections to criticize, I had a thought. I’m spending all this time thinking about the outside, but what about my heart? Not the blood pumping vessel, although that is important, too. I mean the seat of my emotions–the essence of what makes me…me.

Sadly, my heart is far from perfect, too. Yes, from a distance, things seem pretty good. I smile, I try to help people, and I even managed to vacuum once this month. But up close, there is always a hint (or loud scream) of selfish. I think mean thoughts about others and get irritated that life isn’t about me. I don’t always enjoy the demands of raising a special needs child. Even when I help my daughter with her homework, I sometimes get irritated because she isn’t doing it my way. And no matter how many jokes I make about it, I really don’t like scrubbing carpet….

Just like my exterior, there are things I can do to fix up the situation. I can add more makeup to my face the same as I can add more smiles and charitable works to my heart. But the age spots and naughty spots are still there, even if they can’t be seen by the naked eye.

This is why I am so thankful to serve such an amazing God. Jesus came and died to take care of those imperfections. Even when my naughty heart spots show, I know he took care of them once and for all. And for that, I will never stop being thankful.

I hope you have a thankful day, my beloved friends!

Read More

New church for Rachel

Today we attempted church for the second week in a row.

I suppose I should back up a bit and mention that we just moved to a new city a few weeks ago. There have been lots of adjustments, one of which was finding a new church.

Our first week wasn’t too bad, but it was scary. The last church we attended had a special needs classroom, so it was a bit easier to attend. Yet, the church was so enormous we had a difficult time feeling…involved. I know part of that is up to the attendee, but with the distance to the church, Rachel’s autism, and a host of other factors, we did not participate in activities that would help us interact with others.

Back to the new place… Even though Rachel is seven we decided to put her in the 3-year-old class. The structure, lesson level, and toys seemed more appropriate for her.

The first day I checked with the supervisor and class teacher to see if I could stay with Rachel to help her get settled. Being in a new place always Amos up get already high anxiety. I also made an appointment to talk to the children’s supervisor about Rachel during the week to work out a plan. (Sunday morning didn’t seem the best time to work that out…)

So, the first week went well. Rachel seemed to like it, and, as long as I stayed with her, she seemed inclined to follow the class schedule.

The children’s supervisor and I met and came up with a few plans. We will see how they go…

More later!

Read More

Autism and surviving tantrums.

By Jennifer Dyer

As I write this Rachel’s screams and protests echo down the halls of her therapy clinic. Why? She wants to go to the potty. But not just any bathroom. Not any of the five bathrooms available in the therapy clinic. Nope. She wants to go across the campus and use one in the school that is attached to the clinic. As to the reason, I’m not certain. It could bring back memories of a simpler time in her life. Or perhaps it has better acoustics because it is large and filled with storage containers. Maybe she just wants to use that one. Whatever the reason, I told her no and I am having to enforce it.

These sorts of tantrums are common in our family. Rachel—seven-years-old as I write this—is over 4’ tall and weighs 70 pounds. She is strong, agile, loud, opinionated, and stubborn. Long after most children would have given in, she continues to scream and protest. Worse, she cannot be bargained with or disciplined in the manner one might with other children. From what I have read and observed of strong-willed children, Rachel could rule as their dictator for life.

How does a parent manage and survive these sorts of tantrums? Sadly, I don’t always have the answers, but here are some things I have learned:

Let others help you. Today I had trouble physically with Rachel because I didn’t want to drop her iPad (used for communication). A therapist offered to help me, but I turned her down because I didn’t want to make her late to her next appointment. I did, however, ask her to find the therapist we were waiting for. I should have let her help me, though. I accepted help, though, when our therapist arrived and told me I could go. I went. Fast.

Pick your battles to the extent you can. Believe me this one is hard. Sometimes I need Rachel to do something, such as get into the car immediately, but I know I cannot manage it on my own. I either have to wait until I have help or find a way to get her into the car without causing a fit. When this has worked, it has involved me enticing her to chase me with a toy she wants, putting food into the car, or letting her have my iPhone once she steps into the car. This may sound like the wimp’s way out, but there have been days before school where Rachel and I have had thirty minute wrestling matches that could have been avoided if I had chosen a better method to get her out of the house.

Have a strategy in mind. If you are heading to the park or mall or somewhere else where you know a meltdown could occur, go armed with toys that soothe the child or possibly have another adult around who can help you. This does not always work, and I’ve done a lot of praying for help in the moment. Trust God to answer those prayers.

Have a sense of humor. Okay this one is tough, really tough. Not everyone understands what autism entails. There are even people who cling to the idea that children with autism simply need some better discipline and they will be fine. My best advice about dealing with those people is don’t. You have enough stress in your life without letting others hurt you. Find something to laugh about once the situation is over. Life is much more fun when laughter is involved. I keep humorous books all over my house to help me keep my perspective in the tough times. I also have comedian apps on my phone in case I need a quick giggle. And I try to look for a bright side. (For example: Yes, I just fought a big battle with Rachel, but my biceps are quite toned…)

Be consistent. This is difficult for me. My ability to pick battles often depends on my energy level. Some days I can enforce rules that require a lot of energy on my part, but other days I lack energy and strength. Those are the days I take extra vitamins and supplements for energy and must pray for more strength. I am choosier about battles with Rachel, and I might not go on an outing if I lack other people to help.

Learn from your past. Allow your mistakes to be your greatest teacher. Listen to other parents and learn from them, as well.

Keep other parents with special needs children close. Support each other and learn from each other.

Be calm and honest in the midst of trials. I try not to get defensive toward others around me when Rachel is having a tantrum, and I am honest about Rachel’s autism. Most people accept this, but a few will not understand. Again, don’t let that get to you. Also, do your best to keep your voice even and your manner calm. Easy? No, but it helps. I believe children feed off the emotions of their parents.

Keep your perspective. Many days, such as today, I focus on the fact that all things are temporary. True, some trials seem to last forever, but as my mentor used to say, “This is but a blip on the screen of eternity.” So, when you face the various trials of raising a special needs child, take comfort. Heaven is a wonderful place!

The ultimate idea is to keep a support system around you. Pray continually. Don’t do this alone.

Hang in there, my friends!

Read More