Walking together and autism. How we got one piece of our life back.

by Jennifer Dyer

Rachel was a darter. If we went out, I had to keep a grip on her hand or hold her. In fact, I carried her and an arsenal of blankets around until she was seven.

It was good for my biceps, but not helping us move toward a safe and independent future.

So, with the help of our Relationship Development Intervention (RDI) therapist, we went to work.

The goals:

Rachel would stay with us in public, not darting away from us.

Rachel would respond to nonverbal cues to remain with us.

Where we began:

We started as a family moving together. Hubby and I flanked Rachel, holding her hands. We would take between one to five steps at a time and stop, sort of like red light green light. The number of steps needed to be random–if we established routine, we would have more problems. The goal was for her to watch us, not count steps.

At first, we didn’t talk, either. She needed to learn to read visual and physical cues.

How it played out in real life:

Everywhere we went, we played this “game” of start and stop. The best places were those with tiles or segmented sidewalks because it gave her a sense of boundaries. But we had to do it everywhere in order to avoid establishing a rigid routine of only stopping on a sidewalk.

Walking into school or therapy or in the house, we would take a few steps and stop. Red light. Green light. Head shake or standing still meant “stop.” Head nod or moving forward meant “go.”

We generalized the start and stop to other activities:

We played with cars. Go. Stop.

We did it with balls. We would take turns throwing balls down the stairs, nodding at her when she could go.

On the swings. Wait for it… Go. Stop.

The whole routine reminded me of training our late Labrador to walk on a leash. With Missy, we learned that she was supposed to watch us for visual cues. If she looked to us as her leaders, she would be successful and not dart in front of cars. She was supposed to sit when I stopped and move when my left foot moved to walk forward. It took hours and months of training and practice, but Missy actually became a good leash walker.

Missy

I had to make the same commitment with Rachel.

Changing my mental state:

In addition to teaching Rachel in small steps to stay with us, we also had to learn a new way of being in public. Before, with her in danger of darting away, I tensed my muscles, clenched my jaw, my thoughts scrambled, and my heart pounded. “Just get in and get out,” was my M.O. Fear owned me.

In order to keep Rachel calm, though, I had to learn to be calm too. If I wanted her to take visual cues from me, I had to cue her to be focused and at ease. If I wanted to reach Rachel, I had to release fear’s grip on me.

Anxiety, in my opinion, is one of the compounding factors in autism. Rachel seemed anxious about everything. She feared the next bark of a dog, the next screech of tires, the next movement of someone nearby… At the same time, Mom feared the next bark of a dog because it would set Rachel off. Mom feared the next movement of a person because it might set Rachel off.

My focus was fear. Her focus was fear. But maybe she was getting some of her fear cues from Mom…

So, how could I expect her to watch me for cues when she was watching everything else? How could I expect her to be calm if I wasn’t modeling it myself?

I learned to take deep breaths and focus on enjoying the moment being with Rachel, not on getting some big task done. That meant a grocery store trip had to be about time with Rachel, not groceries.

I learned to focus on building my relationship with Rachel and to keep the goal in sight.

Since I mentioned Missy and dog training…

I also learned to watch the Dog Whisperer. I say this with a grin, but I have a deeper understanding of the importance of my own mental state after watching Ceasar’s patient, calm, assertive demeanor. Those same techniques he used to rehabilitate fearful or aggressive dogs–and the fearful, unbalanced humans in their lives–helped me to see the things I needed to change in myself in order to help Rachel.

For more interactive, therapeutic activities, see here for a preposition lesson and here for our lesson in bus etiquette.

Coming up next: Taking Rachel to the mall.

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As the clock turns. Time-change woes and autism.

By Jennifer Dyer

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Rachel has an amazing internal clock. She can’t tell time. But she knows what time it is.

So, that’s why every time the time changes, the rest of us look as though we’ve been run over by a herd of buffalo.

Eldest fell asleep at the dinner table. Hubby looked as though he had two black eyes from the lack of sleep. I feel as calm as a cat in a den of Dobermans.

And Rachel? It’s almost midnight on day three and she’s still screaming. At some point she will fall over from exhaustion, and we’ll get two or three quiet hours. But for now she is screaming, stomping, spraying water on the bathroom walls, and wanting to go downstairs to do who-knows-what.

Hubby is trying to sleep in her doorway. I’m camped out at the top of the stairs to keep her out of trouble. The dog is keeping our bed warm.

I don’t write this to whine. I write this for others who have kids on the autism spectrum … or off the spectrum, but are thrown into a circadian rhythm blender of fun each time the routine changes.

Sometimes it’s like fighting a hydra. Each time we attack and conquer a challenge, two more take their place.

There are times when I read my Bible in desperate hope for some big answer. It should be in there, shouldn’t it? Some formula to make Rachel better. Some prayer to snap her out of it.

But the reality is that some challenges have no easy solutions. Sometimes it is in the midst of those challenges that our best traits are refined and forged. Sometimes life is hard.

I want the situation to change so it’s not so hard.

What ends up changing in times like these is me. For the better.

I am blessed.

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Our too-crazy, over-the-top, not-so-good night.

by Jennifer Dyer

Rachel is on sleep strike again. She sleeps, but only for 3 or 4 hours a night. The rest of the time is fun party time… At least in her mind.

For the many-ith time in a row, Rachel wandered into our room about 3 a.m, her iPad light leading the way.

I tried my sweetest voice–if we upset her, we’re in for screaming, which does not bode well for anyone returning to sleep. “Rach-Rach, it’s not time to get up yet. Go nite-nite.”

She actually listened and returned to her room. Triumph!

For 5 minutes. In the mean time, the dog, afraid of Rachel, jumped into our bed and crawled between us. Did I mention he is a Greyhound-Lab mix. Thin, but like a slinky, the dog can expand to fill lots of space. And we don’t have a huge bed. Hubby groaned because the dog’s paws were in his eyes. I wasn’t so lucky. One good canine stretch tossed me to the floor.

Sleeping beauty.

Rachel returned. And she’s learned a new skill! Yes, she’s discovered the amazing array of sounds available to her in the iPad settings–you know the ones that have all the alarm sounds? All the alarm sounds I’ve used over the last few years to wake myself up?

Yes. Those are the ones. Fascinating.

Right.

“Rach, please be quiet.”

Rach had other things in mind. Although she’s not always intelligible when she speaks, she makes up for that in volume.

I grabbed my pillow our from under the dog and headed for the couch. Rachel didn’t like that idea, either. Since this was several days into the sleep strike, I reacted like a good zombie obeying my queen and turned back to the bed…where I had to settle in at the foot of my side, since you-know-who-four-paws was getting his beauty sleep in my warm spot. Nice.

But being a mom has taught me many things, including how to sleep in difficult circumstances, so I drifted off to a peaceful slumber where I dreamed I was in the middle of a gymnasium–complete with an Olympic-sized pool–trying to manage a gaggle of mutinous toddlers all needing time-out simultaneously.

Hubby said he dreamed he was trapped in a fraternity house.

Fun times.

All I can say is one of us was chipper this morning and ready to get on the school bus. So, thank the Lord for the school bus and why am I typing this instead of napping?

 

 

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Preposition lessons with Rachel.

by Jennifer Dyer

One of the many goals Rachel is working toward in speech therapy is understanding prepositions. For years, I’ve yearned to assist her with language, to use my career experience as a speech-language pathologist to help her, but I usually feel as useful as an empty tube of lipstick.

Today, though, I was able to do something that felt like speech therapy (to me) with her! Or at least I thought I was helping.

As always, things don’t turn out quite “normal” around here.

Since Rachel is highly visual, I thought I would pair the preposition word concepts with a picture card and model the correct usage for her using toys. I was trying to hit all the learning styles I could in one go: visual, tactile, auditory, verbal, and a 3-D representation (that last one is a term I’ve heard used by Kay Giesecke M.S. CCC-SLP).

Sounds like a great idea, yes?

In theory and when done correctly, yes.

But…

I used 1″ square cards from the Boardmaker program that featured a written word along with a simple picture representing each preposition. (See them in the pictures below.) Using some doll house furniture and a Mickey Mouse toy, we labeled one preposition at a time.

On was the easiest for her, so we started there. (See picture below.) I first modeled on by placing the card on the couch and Mickey on the “on” card. “On. Mickey is on the couch.”

I handed Mickey to Rachel. “Put Mickey on.” If she didn’t place Mickey in the right spot, I modeled it again and handed her Mickey to try again.

Rachel wasn’t happy, but she smacked Mickey onto the couch, so I thought … since, the on part went all right, I should keep going!

Yeah, y’all can probably hear the horror film music in the background and at least one of you might be screaming, “Don’t go there!”

But I did.

I threw all the prepositions I had in my arsenal at her. In, on, under, between, in front of, behind…

Rachel grabbed the couch and sat on it.

Then she sat on Mickey too.

And the word cards.

That should have clued me into her emotional state. She was telling me, “Too much, woman!”

But I didn’t listen. I grabbed the couch out from under her and trumped that by adding the doll house bunk beds. She sat on those too. And then hid in the closet, only peeking out so that she could make sure I would notice when she slammed the door shut again.

Yay … score one for mom.

My problem is I sometimes try to accomplish so much at once that I forget to notice the little things. I should have jumped for joy when Rachel got the concept of on. And I should have stopped there, at least for the moment. Perhaps I could have added one more concept, but sometimes it’s best to end earlier than planned with a positive result than to end up with her screaming in the closet.

Just in case you were wondering:

A few days later, we tried again with this set of tiny bears I bought at a dollar store 15 years ago and have used in therapy dozens of times.

But, I’d learned my lesson. I quit trying to be the fabled hare who wins the race with speed. Instead, I followed the path of the tortoise and used only the three prepositions assigned to me by Rachel’s behavioral therapist.

We worked for just 10 minutes. I incorporated only the toys pictured above plus a few more bears. I used the same methods, but much slower, on a small scale, and with much more success. Rachel did hide in the ball pit afterwards, but it she wasn’t upset, just tired.

I started with in only. I put the bear into the house. “The bear is in.” Then I handed her a bear of her own. “Put the bear in the house.” I pointed to cue her for the first few times. After she put the bear in twice, I stopped pointing.

I added on after a few more trials, using the same method. I worked with her using on by itself then added in. Then I randomly asked her to: “Put the bear on.” “Put the bear in.”

I added under, working on it by itself at first. Then I mixed in the other two. Since she had already worked on the concepts with her therapist, I was able to move quickly. If she hadn’t worked on the words, I would have drilled the concepts one at a time in different ways, perhaps using different props, but keeping with only one preposition in a mini session.

If you need picture cards like the ones I made above, I used PicMonkey.

 

 

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The Great Peanut Butter Battle.

by Jennifer Dyer

Rachel was underweight for the first five or so years of her life. Food allergies on top of autism-related sensory/texture issues compounded to make every mealtime as fun as a dental exam. Worse, the only foods she liked were the ones making her sick.

Each time I had to say no to Cheerios, Goldfish crackers, or her favorite chicken nuggets, her lips quivered, her eyes watered. Though she could not talk yet, I felt as though she was thinking, “Why are you starving me, Mommy?” Every “No” I uttered and each tantrum related to food our family weathered shoved knives into my gut.

So, one day I found this simple recipe for peanut butter cookies:

  • 1 cup peanut butter. 
  • 1 cup brown sugar. 
  • 1 egg. 

Rachel loved watching the mixer, so I decided to try the recipe (with only 3/4 C sugar, just FYI). I didn’t expect her to eat it, but hope springs eternal around here that she will at least try something new.

Before I dropped some chocolate chips into the batter (well, someone had to eat the cookies, yes?), I offered her a spoonful.

And she ate it!

I called hubby and Eldest into the room to witness the marvel: Rachel was eating a new food! Not only that, but the doctor had recently given us a mammoth list of supplements to try on her, which, as you can imagine, I always ended up wearing. Day-glo vitamin orange is not my color.

This new discovery of peanut butter opened an entire world of possibilities to us.

Which …

Is how I found myself Several Years Later…

Mixing brown sugar into peanut butter for Rachel.

A few weeks ago, I woke up from this nightmare where I scrubbed peanut butter from my carpet and recliners daily. Except it wasn’t a dream. Somehow Rachel had trained me as her personal peanut butter slave.

She isn’t underweight any longer, either. We currently have the opposite problem.

Standing at the kitchen counter over a bowl of Rachel’s fav snack, I felt as if two mommies sat on my shoulders tossing verbal blows at each other:

What if she develops type 2 diabetes because I’ve let her eat herself unhealthy?

But she hates most other foods!

But she can’t go on like this!

But she’ll cry and beg for peanut butter if I take it away. I can’t do this, can’t live through days, weeks, months of more food tantrums. I feel like such a bad mom when she’s hungry. 

Are you a big girl or not? 

Urg! Sometimes I want to punch the sky. I know I have to be the mom. I even manage it with Eldest. As much as she would love to try, I do not let her eat ice cream for every meal.

But after almost a decade of fits lasting for hours and possibly days with Rachel, I have the strength of hot pudding. The thought of enduring days of screaming, spitting, stripping, peeing on the carpet, and banging her head against the wall until the plaster breaks makes me feel as if I’m pressed under a thousand bundles of plastic grocery sacks, pushed under the surface of a murky lake. I’m drowning, breathless, and I wonder if I’ll ever see the sun again.

But … I was awake after all these years. So I had to try. Being the mom sometimes means pushing through my own issues in order to help my child.

It’s been over a week without peanut butter. The first five or so days, she asked at least 5 times a minute unless we had her distracted by swimming, running an errand (but NOT in a grocery store!), driving aimlessly in the car, or we had to ignore her, which is about as easy as ignoring a tyrannosaurus in a wedding dress sitting on the couch.

We even wound up with another hole in the wall.

But, so far we have been free of the food-which-must-not-be-mentioned lest it start another round of the aforementioned food battle. I’m not sure what will happen the next time we have to take her to a grocery store since she knows where every store in a ten-mile radius keeps their peanut butter (oops! Said it…) and brown sugar–she might have a future in maps.

Sometimes, in the spirit of the Chinese proverb, A journey begins with a single step.

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As the Bus Turns … episode 3.

by Jennifer Dyer

Day two of the special ed bus chronicles started bright, not too hot, and everyone was up and going on time. I had Rachel’s lunch prepared the night before, so we were outside and ready long before the bus got to our house.

When it chugged around the corner, I gave Rachel the “Last Minute Mommy Speech.” In her case it was, “On the bus, your shorts stay up.”

Yes, when I first became a mother that was what I imagined saying before launching my kids off to school. “Play nice. Keep your clothes on!”

Life has a way of laughing at you…

So, there I was, trying to get through to my sensory-challenged, verbally-challenged daughter that it is best to keep her clothes on. She signed, “yes,” so I thought we were good.

She climbed onto the bus while hubby and I waved our arms off, tears in our eyes at our big girl and her big adventure on the bus. She sat in the front row. Got up. Sat in the second row. Moved to a seat further back in the bus. Moved back to the front.

A faint mommy radar signal off, “Ruh roh, Raggy…” But the rest of me–the part that keeps hoping fairies will clean my kitchen while I sleep–was certain everything was fine. I jogged back inside to get Eldest ready for school.

A minute later the bus was back.

???

Rachel had taken off her pants, she wouldn’t leave the seat belt on, wouldn’t stay seated, and was possibly staging a coup.

I wanted to hide. It was as if I’d opened a bag of my favorite chocolates only to find out it was filled with ants. It’s always something with my sweet Rachel. We run a marathon daily with her sensory issues, her food issues, her language issues, and I thought we had come so far with her clothes issues.

And I certainly never envisioned rooms in my home looking like: 

 

Why is everything so difficult?

The bus took off only to stop a few feet down the street because Rachel took her clothes off again. Tears blurred my vision. What must those drivers think of us? Did they skydive to the conclusion that we were the creepiest people on earth because our daughter sheds clothes in public?

As I slumped back to the house, I imagined all kinds of horrors. CPS pounding on my door asking why I let my child act so terribly. Scowling bus-driver faces every day, full of disdain for my child. A call from the school telling us her bus rights have been terminated.

So, I called a friend who would tell it to me straight.

“First of all,” she said. “CPS coming to your house is not the end of the world. Second, and more important, the bus drivers work with special ed kids. They know there will be challenges. Yes, you’re embarrassed, but I doubt they reacted as severely as it seemed. They probably just came back to make certain everything was OK.”

Sometimes I must separate myself and Rachel from her behavior. We are not defined by autism, but instead by what is in our hearts.

So, this morning, I put on a brave face as I walked Rachel out to the bus, still unsure how the drivers would react.

And you know what? They were kind and compassionate. They weren’t horrified or traumatized or ready to cast judgement upon me. In fact, they just want to help Rachel.

So, one of us–ahem, moi–needs to chill and embrace my not-so-normal life. 

 

On a side note, in preparation and because Rachel is so visual, I made her the following social story on the photo editor PicMonkey:

 

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Rachel and the bus.

by Jennifer Dyer

After Rachel took her first special ed field trip on the school bus, she was hooked. I don’t think she cared about the rest of the adventure that went along with riding the bus. She only wanted the bus.

For days after the Bus Experience, she wanted to wear the same dress and pack a sack lunch (the routine for field trips). She was hoping if she recreated the other parts of the event, the bus would come back.

This year as school started, Rachel started her bus campaign. If elections could be won by repeating the same word repeatedly, Rachel would be Grand Empress of the Universe.

“Buh,” she would say, pointing to the above picture of her on her iPad.

“Yes,” I would reply. “You want to ride the bus.”

But I didn’t want her to ride the bus! I like taking her to school. I get to see her teachers face-to-face and hold her hand as we walk in the doors. The times I’ve been too ill to take Rachel to school leave me feeling like a dried-out tree … useless and pointless.

However, I have to see things from Rachel’s point of view, don’t I? As difficult as it seems, my job as a mother is to guide my children toward independence, not hold onto them. Riding the bus for Rachel would be another step toward growing up.

It’s scary, though. She has the verbal skills of an 18 month old. I don’t want to let her out of my sight. The school assures me they have cameras and two adults on the buses and the drivers are kind to the children. Momma bear is still not convinced.

But it’s not about me. So, for Rachel, perhaps I will be brave and give her the gift of more independence.

Wow… Motherhood is not for wimps.

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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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