Tag Archive for autism

08 May 2013
apraxia • Autism • Moms • Parenting • Special Needs • Spiritual Life

Enduring defeat.

by Jennifer Dyer

As the mother of a child with special needs, defeat is often my companion. In some ways, I have accepted the pace of growth for Rachel, but there are often days where I realize she has been left behind yet again by her peers. The pain seizes my heart and tries to choke off my joy.

Sometimes, though, disappointment and defeat don’t relate back to autsim. Sometimes I feel I failed in some other areas. Or something I hoped for doesn’t happen.

Whatever the case, it hurts. Sometimes it hurts enough to make me want to quit, be it writing, cooking, caring, or feeling. Sometimes I want to crawl under the bed and hide.

So, today, when a disappointment hit me and the desire for retreat engulfed me, I had to stop. Instead of wallowing in the moment, tossing my latest project in the trash, and throwing a big pity party, I thought about the big picture, about an eternal perspective.

I prayed, “Lord, I trust you with this failure. I trust you even in this. I’m not sure what your plans are, but I trust you with my future.”

And I felt relieved.

Did God need me to pray this?

No. God is infinite. Jesus is complete. I cannot fathom His needs, if He has any. He is complete whether I trust Him or not. But as a mom, I can understand the joy of watching my children trust me.

Furthermore, I had to say that for myself. I needed to hear it. I needed to remind myself that I did believe God is in charge. Sometimes I hold things so tightly that my desires crumble in my grip. Instead, I should hold everything with an open hand and trust God with what happens next.

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06 May 2013
apraxia • Autism • Moms • Parenting • school-age • Special Needs

Life adapted: soap and shower gel.

By Jennifer Dyer

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Rachel loves shower gel. She loves it so much, in fact, that we might go through two bottles per day.

I tried watching her, even not letting her shower alone. I’ve also tried over the last four years to teach her how much gel to use with each shower.

But she insists. I think some if it is due to her obsessive compulsive nature, in addition to the autism, anxiety, and apraxia that cloud her mind and communication.

If Rachel opens something, whether it be a container of lemonade, glue, or soap, she wants it finished, empty, and discarded (sometimes into the carpet) so she can move on to the next thing. Other people I have known with OCD tendencies say this is common.

But the constant waste does little for my own anxiety. Understanding where she is coming from helps a great deal. And so does finding solutions to help us both.

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In the shower, I installed a second shower caddy above the shower, about 7′ high. I have to stand on tippy toes to reach everything, but it helps.

I try to put a little bit of gel in the containers she can freely reach, a trick I learned from Grandma. I also continue to show her by modeling how much soap to use and verbally prompting.

In my case, at least, Rachel likes to learn the rules for how things work, but I have to remember sometimes it takes years to teach her a concept.

Sometimes the years part gets to me. But have you ever wondered about God’s patience with us? I’ve struggled with some of the same issues for years. Yet God is far more patience with me than I am with my own children. And that is something for which I am thankful.

Lord, thank you for your patience!

How about you?

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24 Apr 2013
Autism • Special Needs

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.

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22 Apr 2013
Autism • Moms • Parenting • school-age • Special Needs • Spiritual Life • Teens • Tweens

Someday, a mom’s poem.


By Jennifer Dyer

Someday I will walk without sticking to my floors.
Someday I will leave a room and return to find it the same as I left it.
Someday I will shower without little hands banging on the door.
Someday I will potty without a posse of little helpers.
Someday I will walk through a store without Cheerios stuck to my rear.

Someday I will look back and laugh.

Someday I will listen for laughter and hear silence.

Someday I will wish for another moment, another cuddle, another hug.

In light of someday, I will cherish today.

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10 Apr 2013
Autism • character building/discipline • Friendship • Moms • Parenting • school-age • Special Needs • Tweens

Life Adapted–game playing with my daughter with autism.

by Jennifer Dyer

I’m starting a blogging series entitled Life Adapted revolving around raising our daughter with autism. Most days I feel overwhelmed by life, and I’m never quite sure I make the right parenting calls, whether I am dealing with my “typical” tween or my younger daughter who is on the severe side of the autism spectrum.

According to almost all moms I’ve met, feeling overwhelmed and unsure is normal. Hugs for us all!

That being said, I have a few experiences not every mom with a special needs child has been afforded, and I want to share in case it will help others.

As a speech-language pathologist, I was trained to look at every activity with someone on my caseload in mind. How can I adapt this to meet _____ goals? Most of the time it involves rethinking the purpose of a game or object and being flexible with the rules, the same way one might modify a recipe to accommodate a food allergy.

Over the years I’ve used this thinking with Rachel, sometimes to the frustration of everyone, but sometimes… Sometimes things are beautiful. I will be spending the next several months sharing ideas that I hope will bring your family or school as many smiles and hugs as they have ours.

Today, I want to talk about playing ball. Four Square to be exact.

Sunday evening this past week was beautiful. Not too windy, not too cold, yet not warm enough to bring out the mosquitoes. Perfect.

As a family we ventured outside. The goal in my mind was to have Rachel stay around us and to enjoy family time. While Eldest and I bounced the ball around, Rachel picked leaves off the bushes. (Okay, not a productive activity, but my goal was for Rachel to stay by us and those bushes needed pruning. If I started hounding her she would have run off.)

After a few minutes, Rachel ventured to the driveway and glanced at the ball. My mommy sense told me she wanted to play, but the rules for Four Square were too complicated for her to follow. I also sensed if I made a big deal of her joining us she would run away.

I asked Eldest to bounce the ball slowly to Rachel. When Rachel caught the ball, we all cheered. We encouraged Rachel to bounce the ball to Dad. From there we took turns bouncing the ball, rolling the ball, and kicking the ball to each other. Rachel didn’t always catch the ball and didn’t follow the order in which we were throwing, but perfect ball skills weren’t the goal. The goal was participation and fun.

Goal achieved!

At one point, Eldest sighed. “Are we going to go back to playing?”

“We are playing, just with less complicated rules.” It took her a moment to decide she was OK with the change, but she got into the spirit. We had a precious time, laughing, talking, and playing ball.

This isn’t just for dealing with children with autism. Activities can be modified for younger family members and people who have mobility issues. This same concept can help kids in a school setting incorporate their peers with special needs. The important thing is the “rules” of the game aren’t as important as participation.

In this way, everybody has fun. There is a time for competition and there is a time for compassion and love.

The best part? The last two nights Rachel has slept with her arms wrapped around one of our Four Square balls. And that is beautiful.

Up next: Life Adapted–dinner time.

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06 Feb 2013
apraxia • Autism • character building/discipline • Friendship • Moms • Special Needs • Uncategorized

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.

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30 Jan 2013
Autism • humor • Parenting • Travelling

Adventures at Grisly Bear Den

by Jennifer Dyer

 

A few weeks ago, hubby saw a Groupon for Grisly Bear Den. He called me into his office. “We’ve been saving for months to go there. This is a good deal. Should we take it? We can even go on Rachel’s birthday. It’s the perfect gift for her, with the indoor water park.”

Me, being the cheapie in the family, frowned. “But the weekends are so expensive. Maybe we should try for a Sunday-to-Monday trip?”

“The kids will miss school.”

I laughed. “But eldest hasn’t missed a day yet. It’s foolproof. What can go wrong?”

Wednesday before our trip, eldest came down with the flu.

But she rallied. Saturday her fever ended, so we were golden.

We forged ahead to Grisly Bear on Sunday, ready for two days of water park fun.

Two hours into it, I looked at hubby. “Are we there yet?”

“We’re here. In case the water up your nose didn’t clue you in.”

“Are we done yet?”

He shook his head just before a wave drenched him. “We just got here.”

“Oh. Goody.”

I saluted and headed up another six flights of stairs with eldest, carting an inner tube taller than me, so we could be flushed down a giant toilet. “Call a plumber if you don’t see us in 30 minutes,” I yelled to hubby. He didn’t hear me, as he’d just been pulled under the waves in the tsunami pit.

Chasing eldest up endless stairs, my legs turned to concrete. They should have included a 6-week training course to prepare me for the stairs… “Aren’t you still sick?” I asked.

“No, this is fun! Let’s go down suicide pipeline next! And you get to go backward. You’ll get drenched! It’ll be tons of fun.”

“For you.”

She nodded. The child knows a good time when she sees it drenching her mother.

Two hours later, I was on my 50th loop around the indoor river with Rachel. Boys above us had camped out on the bridge, shooting water bombs in our direction every time we passed. The little water guerrillas were impervious to my battle tactics, including a stern mother glare, shaking fists, and pitiful looks.

Waterlogged, I asked Rachel if she wanted to do something tamer, like sleep. No dice.

I was ready to fake a broken leg.

That night, Rachel and I returned to the water park alone while hubby and eldest went on the hotel’s Amazing Quest. Three hours later, hubby and eldest returned. The door opened and the two soldiers crawled in, stretching their arms up for assistance.

I jumped to my feet. “Speak to me! What happened? Was it those little water criminals from earlier? Should I call in the big guns and talk to their mothers?”

Hubby shook his head, falling onto a bed. “No… I can’t feel my legs. Are they still there?”

I settled down. “Yes, they appear to be attached.”

He moaned. “The horror! Up and down flights of stairs, all over the place. Never in the same place longer than a minute. I might not make it to morning.”

“Oh, but we’re spending all day tomorrow in the water again. I had to drag Rachel out of there tonight with the promise we’d return first thing.”

That night, Rachel had a GREAT time. She woke up bright and early…at 4 a.m. and cooed in her nonverbal manner until 6 a.m. Hubby spent the night trying to fix the leaking toilet, and eldest kept telling Rachel to be quiet.

Bleary-eyed, we hit the water park as soon as it opened. Rachel squealed and dove in, face first. The rest of us chugged after her. I mustered a grin for eldest. “You want to be flushed down the toilet again?”

Hubby had a spasm. “I’ve had enough of toilets, thanks.”

Eldest’s face paled. She looked at the endless stairs. “I can’t make it.”

But she was a trooper. We stayed in the tsunami wave pit with Rachel until the chlorine had turned us into bleached prunes. Finally exhausted, we called it a day. At 11 a.m.

We oozed to the car. Dry for the first time, I whipped out my camera, but eldest and hubby ducked. Eldest mumbled from her crouched position. “I can’t smile. My mouth is too tired.”

I gave up and snapped a pic of the car outside the hotel.

We headed Rachel’s fav drive-through to get some lunch on the way home. “Anyone want to go inside to eat?” I asked.

“Are you kidding? Look at me.” And that was hubby…

I gave up. We sang Rachel happy birthday over chicken nuggets in the car.

As we pulled into the driveway, eldest woke up and stretched. “That was so much fun! Can we go back next month?”

I grinned. “Maybe not next month, but sooner than later!”

What is your favorite vacation spot?

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21 Jan 2013
Autism • character building/discipline • Moms • Parenting • Special Needs • Uncategorized

Hulk–I mean, Mommy Smash! 5 Action steps for when you lose it.

by Jennifer Dyer

I was having a moment. Actually about 10 moments, all at once. After “helping” me with a smoothie by adding someone’s leftover ice cream to the blender, Rachel scooted her chair over to my overflowing kitchen sink and grabbed two plates to move them elsewhere. The plate hovered over my crowded kitchen island. She started shoving. We were about to have an avalanche of already ruined smoothie, blender, dishes and more.

My hands clenched. My brain switched to static. A volcano spewed lava from my chest. “Stop it, Rachel! Can’t you just stop for one second?” My voice echoed off the kitchen walls. My sister, in mid sentence, clamped her mouth shut. The other three kids hovering in the kitchen stared at me with big eyes. Rachel froze and slapped her hands over her ears.

They all watched me, the question apparent in their eyes. “What is she going to do next?”

I took a breath. Exhaled it. Somewhere deep inside me I cried to God for help. “I’m sorry. I shouldn’t have yelled. I just lost it.”

Everyone let out a collective breath.

I shook my head. “That was wrong of me. I shouldn’t have yelled like that. I should have stepped away instead of yelling. I’m sorry, Rachel. I’m sorry the rest of you had to hear that.”

Conversations resumed. The tension level dropped. Mt. Vesuvius Mommy had stopped erupting.

Ever happen to you?

The 5 “A” Actions steps for when (not if) mommy erupts:

1. Admit it. Probably everyone, including the neighbors, heard you, so be brave. Own up to the action. Honesty and taking responsibility for behavior is a great thing to model for your kids.

2. Apologize. Always keeping cool is almost impossible. No one is perfect, therefore even parents/adults have to apologize. Sometimes it’s what we do when we make mistakes that impacts kids the most.

3. Acknowledge how your behavior was inappropriate and what you could have done differently. This sort of self-monitoring is a good thing for children to learn, and they learn by observation much better than endless lectures.

4. Allow yourself a moment, if needed. Adults need a time out sometimes too. This might be necessary earlier in the process, but don’t neglect the other steps after time out is over.

5. A new direction. Initiate a new conversation, move the family to another place, smile, hug someone, start fresh.

Do you ever erupt? Share with us some of the ways you have learned to mend the moment.

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14 Jan 2013
apraxia • Autism • Moms • Parenting • Special Needs • Uncategorized

Tantrums, autism and staying the course.

by Jennifer Dyer

I’m a hostage of anger. I told Rachel no. You would think the world is ending.

With Rachel’s autism, I never know what might set her off. But I have lived through enough fits that my chicken-hearted self does not want to engage in battles at all. Perhaps that is the problem. If my future self could tell my past self something, it would be to stand firm during the fits when she was little.

But I did stand through so many of them. When she didn’t want to get in the car for school, I repeatedly dragged her down the stairs, making sure I was the only one who got carpet burns. I stopped the car countless times to reattach her seat belt and/or her clothes. I held her at the local swimming pool during the screaming, agonizing, horrible ten minutes of hourly adult swim.

As I listen to her scream today, a deep need for sleep washes over me. I slump over, my hearing shutting down. She grabs me. I am limp. But she pulls again. She will not let me out of this fight.

A bubbling rage erupts under the drowsy defense. Hysterical laughter tries to release the pressure, but I can’t laugh either. I clamp my lips together and close my eyes. I cannot lose it. I cannot lose it.

She slams every door upstairs before running downstairs to slam the door to her “office” closet under the stairs. Slams it over and over. Kicks the wall. Pounds, bangs. Screams. She wants a reaction. She wants me to engage. I resist. I hold my breath. I want to sleep, no, I want to eat. No, even more, I want a drink, to take a mental vacation from the constant stress. But I cannot give into that. It is a temptation, one I must resist. One drink would be too many. I might never stop.

I pray I will live through this. I pray I will not explode. I beg for help. Maybe she needs a spanking, but I cannot give it to her. I am not certain of my self-control.

I try the methods taught to us by our therapists. She wants my attention, so I  keep my back to her. I take deep breaths, say nothing, don’t react. She sneaks around to get what I told her she could’t have. I have to correct her now. The battle starts again.

I can’t do this. I take solace in the piano, butchering Beethoven’s Moonlight Sonata, pounding the keys, at least the one bit I can remember. She runs to me, presses her hands over mine. I cannot escape, cannot stop this.

I keep playing, despite her hands covering the keys. I play Twinkle Twinkle Little Star, anything. Our dog runs circles around me, head low, tail tucked. The pack is in distress.

Yes. It is. Help me, Lord.

Rachel retreats again to the closet. God’s wisdom hits me. Get rid of what she is after. Go now.

I run. Hide it. Sprint back to the piano. Keep playing.

It takes another 30 minutes of playing, praying and waiting, but it ends.  The storm is passed.

I want to crawl into my bed. I feel as if gravity’s pull is twice as strong on my body, that I slog under water. But I have learned something, just as I do every time I live through a fit. I am stronger. I can do all things through Christ who lends me strength.(Philippians 4:13.)

With each storm I learn better to depend on the Lord. Pray. Seek solace in the Lord. Resist the temptations that constantly hail down on me. But I cannot resist on my own. During the moments when life is the hardest, I have to lean on the Lord. If I didn’t spend time daily learning God’s word and leaning on Him, I would rip apart at the seams when the storms come.

My point, dear friends? Hold onto the Lord, every day. Ask Him daily to carry you, so that when the tough times comes, you don’t have to fear God isn’t with you. He will already be carrying you.

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08 Jan 2013
Autism • Grandparents • Moms • Special Needs

A mother’s love is… Join me for a year of celebrating moms.

by Jennifer Dyer

Moms are many wonderful things. I could write a thousand pages about moms and not cover all that we do. Instead, I decided to spend a year celebrating moms. Each day on my Facebook page, I’m going to share a mom thought. Join me there for some momming fun and love. Simply “Like” my Facebook page and we’ll celebrate this journey called motherhood.

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