New room, new routine.

 

When Rachel was three, she started crawling into bed with Eldest every night. At the time, Eldest was glad for the company.

When we moved four years later, I thought the girls would want their own rooms. We set up a room for Rachel, but she still crawled in bed with Eldest each night. Since we moved during the school year, there was no time for long battles and hours of screaming each night. Or maybe I was too chicken-hearted to try. I put a second bed in Eldest’s room and things went on from there.

But hasn’t been peachy. Rach has always had trouble sleeping. Sometimes she’s up in the middle of the night. Sometimes, especially when Eldest is gone, Rach screams for hours because her routine is wrecked. When Eldest has a friend spend the night, Rach might scream and kick until the wee hours of the morning.

Things had to change, but it was going to be painful.

Ms. Brenda, Rachel’s ABA therapist, agreed it was time to separate the girls into their own rooms. But she cautioned me: once I made the move it had to be permanent. I could not be wishy washy. One of the biggest things Rach needs is clear boundaries.

So, I went to work that day. I put everything Rach loved into the new room. I moved the ball pit from the guest room closet into Rachel’s new room. (For a quick explanation of how I made the ball pit, see here.)

Even though Rachel’s new room already had a pretty bed in it, I moved the bed she’d been sleeping on into the new room, too, trying to send a visual message. (And because I had to stay in there with her most of the first two nights.)

I moved her dinosaur collection into her room and all her noisy toys that were previously off-limits at bedtime because they bothered her sister. I put her name on the dry-erase board and put her name on the wall–anything to mark the new room as hers. 

We added a few new, but familiar touches Rachel already loved. The day before I started this change, my niece reworked her bedroom. (The timing was such a God-thing.) Rachel loves my niece’s room, especially ducky, the giant stuffed duck. (The ducky saga is here.) So, when my niece offered us her duck and room decorations, I jumped on it, knowing Rachel would love the change, but it wouldn’t all be too new.

I also chose a time when Eldest was gone for a few days. That way the noise all night wouldn’t bother her, and Rach would be less tempted to return Eldest’s room.

And I planned to get no sleep for several days. I don’t say this to be a martyr. I had to plan ahead so I wouldn’t be angry or surprised at the lack of zzzz’s.

My no-sleep prediction has been pretty accurate. But it’s summer. My writing and house projects can wait. There was nothing major happening this week. Because we moved everything of Rachel’s into her new room, she wasn’t confused about where to go. In fact, she was excited. It’s day four and things are going well, although it’s usually past 2 a.m. before she falls asleep.

Several things have happened to make this easier:

  • Brenda and school have taught Rachel to recognize her own name. This developmental step is huge. Rachel seems to feel more confident.
  • Rachel has become more independent as she learns to communicate with sign language and word approximations.
  • Brenda has worked on compliance. This kind of change would not have been possible two years ago. Or, at least, one of us would not have made it through the process …
  • As Rachel has reduced the length and strength of her tantrums, Brenda has worked on ME so that I can hold firm. That might be the biggest step of all. 

*It’s been three weeks since The Change of Rooms and I first started writing this post. (I was correct about the lack of writing that would happen around here.) We’ve had a couple great nights of sleep, but some nights Rachel only sleeps three or so hours. But, overall, the pain was worth it.

Eldest has helped by writing Rachel messages and drawing pictures on the white boards in Rachel’s room. We spent some time reading books in her room, and as you can see, I’ve spent time showing her how to play dress up with her dino friends.

We’ve had some reversion in potty training. Stan, my steam cleaner, has been called back to active duty, but so far, it’s only happened a few times.

So, for those of you facing a new routine change, I’d encourage you to get all your ducks, big and small, in a row then go for it and stick to it.

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One Sunday afternoon and autism.

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It started, as many things do, with something small. A glass of water. I had no idea it would end with a hole in the wall.

Earlier, after a peaceful Sunday afternoon, Eldest attended a swim party. On the way home I asked her to head straight to the shower. Otherwise, Rachel would think we did the unthinkable–went swimming without her.

Rachel knew, though. She can smell chlorine on a year-old swimsuit. At first, she didn’t seem to react beyond babbling more than usual. But with her communication issues, it is hard to tell.

Her frustration became apparent, however, when she stared straight at me and dumped a glass of water into the carpet. Things went darker from there. In less than 10 minutes we had a hurricane in the kitchen–water dripping from the countertops. And a tornado in the closet, complete with a foot-sized hole in the wall.

While I don’t endorse her tantrum behavior, I’ve realized I don’t give Rachel enough credit. Even though she is nonverbal, Rach is far more sophisticated than I realized. I believe she was sending a message: you take Sister to all kinds of fun places and not me.

I wanted to send my own message back: but everything is so difficult when we go places. I still have to chase you sometimes. You make loud noises. I have to be hyper vigilant every second. I feel like autism has taken us hostage. I get so tired.

But life is what it is. No one asked Rach or I how we felt about our situation. So, we have to make the best of it.

Since Rach doesn’t get invited to many parties, I need to do things with her during those moments. It’s difficult because I have my own set of goals to accomplish. Letting the dishes, my blog, the laundry, or other things go makes me feel as though I spent all my time running backwards. But I have to think about how she feels in those times, too. Big sister does seem to go all kinds of places while she sits at home.

Yeah. It stinks. But life has a tendency to hand us all lemons. They may be sour, but lemons are one of the healthiest foods around. And some of the best desserts in life are made with them.

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Summer fun with autism.

By Jennifer Dyer

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While older sister is off enjoying exciting camps and VBS activities, I’ve been at a loss as to what to do for/with Rachel. I know there are camps specially designed for children with special needs, but those are costly and aren’t every day of the summer. Plus, part of summer is having time to bond with the kids.

Today, Grandma and I brought her to the local mall. With an all-day carousel pass of $5, it’s a great deal. And early Tuesday morning is pretty mild at the mall.

Still, we aren’t only here for fun. This is a great opportunity for learning social skills, language, turn-taking, eye contact, and patience. It is also, for us, an opportunity to work on wearing clothes properly.

So, even though there aren’t many people here, I explained to the attendant that we would get on and off each ride, practicing waiting our turn. I ask her if she wants to ride again (yes/no question/response). We label the animals. Talk about the animal’s colors. I’m trying to get her to combine two words (color + animal).

She has to keep her pants pulled up properly if she wants to ride. We have to follow rules, including walking and wearing the seatbelt properly without complaint.

She has to look at me while we talk. We went into a store with the promise we could come back. She has to walk beside me and listen to where I ask her to go (following directions).

It’s like a therapy session and camp day all rolled into one for the bargain price of $5. And maybe someday my head will stop spinning…

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Language lessons with Rachel

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I’m watching Rachel do therapy. Watching her answer questions, amazed that she is able to answer yes/no queries, say the first sound of some words, and use colors for describing. She has come so far since the days of her dragging me to what she wanted and/or screaming while we try to hand her anything and everything just to have peace.

It is amazing to watch her progress, but also like swallowing a mug of rusty nails. Her therapist asks her if she wants the blue block. She signs yes and takes the green one. They drill it over and over until I am squirming in my seat, biting my lips, clenching my hands because I see the frustration mounting in Rachel’s face, fear the tantrum that might come, and, worse, I am sitting back in that developmental pediatrician’s office seven years ago, when Rachel was only two-years-old, bawling my eyes out, watching her fail test after test, realization dawning that life will never be easy for my precious child.

It is a strange feeling, to have this elation and soul-crushing grief share the same space in my heart. It is as if I will tear in half. Part of me rages and cries out to God, “Why?” The other half cries with relief, thanks God for the progress, because, at age nine, she is finally starting to communicate with some accuracy that the outside world can understand.

Sometimes I wonder if I will keep the pieces of myself together, how a soul can hold that many powerful emotions at once. But I cannot let go. I must clasp my burning heart together for Rachel. I must sit and watch therapy sessions even though I want to jump in and prompt her to answer, I want to run away when I see how hard it is for her, and I want to yell it to the world when she gets it right.

But I must settle for quiet, for high fives, for hugs, and accept her progress as she moves through life at her own pace. I must watch her fail, but not give in to my vortex of grief that pushes against me so that I can be there for her. I must accept the failures with the achievements. And I must accept the pace of her progress.

Rachel is beautiful, she is mine, and I love her for who she is.

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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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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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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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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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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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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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