First day of summer…Mom’s gonna blow.

by Jennifer Dyer

It’s the first day of summer break*. I thought I was doing pretty well this year. Normally, I have panic attacks in the weeks leading up to summer vacation, but I had none of the gripping, choking, I-might-be-having-a-heart-attack moments this year. I did, however, get shorter in temper and I noticed my energy level draining away. Sure signs of circumstantial depression.

But I was going to prevail. My big plan, especially to start off, was to spend the summer in the pool. Do some projects around the house. Read with Rachel and work on some educational goals.

Today, Monday, it rained and poured. Definitely not a pool day. Rachel kept asking for her back pack and the bus. She tried to pack a lunch. She’s bored, but doesn’t want me to do anything with her because it’s not part of the routine. We can’t read because we’re not at school. We can’t write because it’s not her desk at school. I have stuff to do around the house, but those projects won’t help Rachel’s anxiety with her changed routine. And at this point, my anxiety response is taking over, which means I can barely stay awake and I want to sit around stuffing my face with chocolate.

So, we went to the library. Apparently, so did half our town. The noise drowned out some of Rachel’s squeals. At least we weren’t getting the stink eye from the librarians for disturbing the peace (and really, the librarians here and in our last hometown have always been truly kind and accepting toward Rachel. I just worry we are being too loud).

Every book Eldest picked out felt too old for her, and Rachel just wanted to play inside the wooden tree that was filled with toddlers. As Rachel did her usual hooting and spinning movements, people stared. Eldest grouched and stayed away from us. I wanted to collapse into a pile. This was less fun than our last trip to the dentist.

My mind spun. Rachel’s almost 5 feet tall and she looks like a preteen, but she’s mentally way younger than that. If only she were smaller, she would look more appropriate. We would be a part of the crowd instead of having flashing lights overhead saying, “Something different is happening here! Everyone, stare at us!” If only… But I’m only kidding myself. We don’t blend.

Still, I held it together. We even made it through the grocery store with no meltdowns, Mom included. But when we got home and I tried to read to Rachel. I sat in the wrong place, she didn’t know the book, reading is for school and bedtime, and she really just wanted lemonade. She fussed and even screamed while I read. And she asked for lemonade. And she asked for lemonade. Did I say that twice? Yes, but Rachel said it more than that. (And, of course, most of this was detective work on my part because we’re still so far from her being able to speak her mind except for with a few sounds, signs and pictures.)

I finished that stupid book because I was going to finish SOMETHING, but I should be the one who checks it off on my reading chart because I’m the only one who paid attention. I feel like hiding under the bed. The day is only half over.

But…being a mom isn’t about being a wimp, is it? So many times I want to give up, and there are times I do in other areas. But those projects aren’t people.

As I sit here and write and Rachel yells at me for lemonade, I think today is going to have to be a one-foot-forward kind of day. Every journey begins with a single step.

*Obviously it’s no longer the first day of summer for us, but life has been so busy this is the first chance I’ve gotten to get this post out. Obviously, we survived. It rained more, but we got to swim and we adjusted one day at a time. Rachel still asks for the bus, but it isn’t frantic. She just wants to communicate she misses it and wants it to start again. And it must be difficult for her. Not knowing when and if school will start again, not understanding how the big world works.

One day at a time, sweet Rachel. We’ll get through it together.

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Our life as a puzzle: uncovering the beauty of my daughter with autism.

by Jennifer Dyer

Our life is a puzzle. Sometimes I look at a situation like Rachel’s autism or my experience with cancer and the pieces seem scrambled in a hopeless, senseless jumble.

I have a choice in those situations: hide from it and pretend I don’t see it, which helps nothing, or I can pick apart the pieces and make sense from the chaos, step by step.

I want to quit, but something drags me forward. One piece at a time, patterns emerge and hope shows its face. I can’t help Rachel speak like a Shakespearean actor in one day, but I can work on her imitating “ee,” or “ah.” I can’t teach her to read in one day, but we can sing the alphabet. One thing at a time, one little step at a time.

As I look back over the years and all our struggles, I see each tiny puzzle piece we’ve already clicked into place. It’s overwhelming to see the whole, but when I look at it as tiny parts, I can manage.

And as we go along, something beautiful is emerging. Some of the beauty is in myself. I have grown in ways I never thought imaginable. I’ve learned how to persevere. I’ve learned how to love deeper than I thought possible. I’ve learned to forgive, to have grace in failure, and to laugh at the messes that used to send me into a panic.

But the real beauty that is emerging is Rachel. She teaches us how to be strong. She overcomes a speech disorder by using pictures to show us her desires. She attempts to make words even though forming each new syllable is like running a marathon for her. She struggles with deep anxiety and OCD behaviors, but she is willing to forge ahead with each new day. She is beautiful, she is strong, she is amazing. She is my beautiful puzzle that is a masterpiece.

 

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Perspective in the storms.

by Jennifer Dyer

My heart is heavy this morning.

I’ve spent a lot of time being Diva Goldilocks with a side heaping of Little Red Chicken in the last week. Everything in my house was not Just Right, and I deluded myself that I was having to do everything myself. Anger planted poisonous roots into my soul as I wallowed in thoughts about everything in my life that wasn’t Just Right.

Stress and anxiety pulled at me as Rachel’s newfound OCD behaviors went into high gear. I think she deals with her anxiety by trying to keep her environment Just Right, at least in her eyes, which this week included Chex cereal all over the carpet. The more stressed I get, the more she reacts with increased OCD and sleeplessness, which increases the cycle in all of us.

But last night a dear, sweet friend of mine lost her home and cars in a tornado. I don’t know many details, but the pictures of her neighborhood on the news show only rubble. I know her family made it, but I wonder if they had pets. And if they were able to save anything. Pictures? Clothes? Special blankies? Some people died in the tornado, too. Did she know them? Did I know them?

I just heard another family in our family ministry lost their precious father and two daughters. Other family members are hospitalized. Devastating. Heart rending.

So much loss. So much heaviness of heart.

I feel like such a spoiled brat. My heart squeezes my throat shut every time I think of her situation. My eyes burn with tears. This woman spends most of her spare time praying for others and working behind the scenes to make some big ministries stay afloat. I love spending time with her because her presence is like a drink of cold water in a desert. The other family I did not know, but they are in the throws of devastation. Another family in our ministry lost their home, too.

Now they all need prayer and help. I’m sure many hearts are melting with grief this morning as we see in daylight the devastation of a storm which none of us could control.

And I have put Diva Goldilocks and Little Red Chicken back in perspective. My home is far, far from perfect, but it’s still standing. Instead of focusing on myself and what isn’t Just Right in my life, I should focus on being thankful for what I have and on being mindful of others and their needs.

Pray for Arkansas. Pray for my sweet praying friend. Pray for the other families so deep in loss. There are many relief funds set up. If you wish to give, here is one of the places taking donations. Mosaic Church of Central Arkansas Tornado Relief Fund.

If you know of any other relief funds, leave them in the comments or FB feeds.

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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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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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Reasoning in the pits.

by Jennifer Dyer

The other night I noticed Rachel’s ball pit looked rather sparse.

A short investigation brought us to …

Because I had cleaned out the ball pit the other day, she had decided it was time to move her precious stash of items to a safer location. Like a squirrel hiding a nut stash, she had slowly moved items to the guest room, where we rarely visit.

Urg! When I walked into the room and saw the debacle, my knees turned watery and my stomach flipped over. I clamped my mouth shut because I really wanted to scream. Why? Why does she do these kinds of things? I know she has obessessive compulsive leanings on top of her autism or maybe because of autism, but keeping up with her messes is as easy as grabbing the wind.

I stared at the mess for another moment then turned out the light. It was too late to deal with it and I wasn’t going to anyway. I would, instead, hope a magic fairy came during the night to pick it up.

Right.

The next night, hubby worked with her while Eldest and I were gone. Together, they took balls back to the ball pit and threw some of the trash away. This is the only manner in which we can see to deal with the issue. Making her clean it step-by-step, with us being impartial, unemotional monitors during each of her screaming, agonizing, tantrum-filled moments.

I was still in the magic-fairy-hopeful stage this morning when I realized a game her teacher had sent home from school was missing.

I found most of it in the Room of Doom, as the guest room should be called. However, several pieces are still missing, probably under the layers of shredded tissues and papers.

I pressed my fingers to my temples. I couldn’t help but ask: Why is everything so difficult? Eldest was downstairs having a crisis about her lunch and I was trapped in the Room of Doom doing a geological dig to uncover two stupid magnets that are so small they might be in the trash or in the dog’s stomach.

I still haven’t found those magnets, but as I walked the dog a few thoughts occurred to me.

One:

As a youth, I thought unorganized and messy people lacked motivation and discipline. As a mom, Payback keeps taking me to lunch, ordering the lobster, and sneaking out the bathroom window to leave me with the bill.

Life isn’t simple. It doesn’t come with a neat little box full of comprehensible instructions.

Yet, those overwhelming challenges leave me a better person, even if it is simply a change in my own attitude toward judging others. Pain usually brings understanding and compassion.

Two:

I realized I’d recently prayed for motivation to clean up the upstairs… Whoops. Losing an expensive school material certainly gets me moving. So, who says God doesn’t answer prayers? Lol.

Perhaps the biggest thing I need to grasp as a special needs mom is the key to surviving difficulties are to grow in them.

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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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