Expectations, a sick mom, and the holidays.

by Jennifer Dyer

Three weeks ago I had a hysterectomy…just in time for the holidays.

I’d spent a great deal of time preparing for my surgery emotionally and physically. A few years ago I had cancer, and the surgery didn’t go well. This time I was determined to be prepared for the worst and keep my family functioning. I bought enough toilet paper to keep a convenience store running–my daughter with autism loves to watch it go down the pipes. I fixed extra meals. I prepared a few holiday dishes. I did laundry. I picked up clutter.

In addition, I studied up on hysterectomies and talked to previous patients. I even connected with a friend scheduled to have surgery right after me. I knew I’d be down for at least a week, maybe two, but after that I should be good to go.

The good news is my friend hosted a huge holiday meal in her brand new house and did lots of holiday shopping less than two weeks after her surgery.

Me? I watched the entire series of Cake Boss on Netflix while lying in bed.

At this point, I’m in the midst of a typical post-surgical depression in addition to drowning in unending nausea. I don’t have energy to do much. I want to curl up under the covers and feel sorry for myself.

And I feel a bit like a spectator in my own home.

However, a few things have occurred to me:

  • I don’t always have to be the best at something, recovering from surgery included. Maybe I’m not the kind of patient the doctor wants on his Christmas cards, but that’s OK. 
  • Circumstantial depression is a temporary state. I will come out of it. Yes, I feel like I’m trying to climb my way out of a well right now, but that feeling will go away. The best thing I can do is ease back into as much of my normal as is possible even though that will take me some time.
  • The holidays don’t have to be picture perfect. I’ve said this many times, but it’s easy to forget.
  • When mom steps back, sometimes others blossom. My eleven-year-old daughter did most of our decorating for Christmas. And you know what? She enjoyed it. She has also done some baking this year with me giving mostly verbal prompts.

  • Rachel has grown closer to others while I’m down. I’ve seen her give several people genuine hugs, and she shows me pictures of her adventures with a huge grin on her face. There’s still no one she prefers like her Mamma, but she has branched out a bit.

Sometimes I set huge expectations of myself and am left feeling like that winter picture above: frozen and heavy with burdens. What I forget is that in the spring my yard will be bursting with blooms and life. Just like my yard, under the surface, in my heart, even when I can’t be active or live up to my expectations, God is at work.

If you’ve set huge expectations for yourself this season and feel you are not measuring up, give yourself some grace. Sometimes it is what is taking place under the surface–the heart–that matters.

So, remember: Even when circumstances look bleak, great things are taking place underneath.

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Why Veteran’s Day is important to those with special needs.

by Jennifer Dyer

This morning I attended a Veteran’s Day program at Rachel’s school. I expected Rachel to last maybe five minutes before she became disruptive or upset about the change in her routine.

She sat through the entire program. She stayed mostly quiet. She remained in her assigned spot. She even waved her streamer at approximately the correct moment. Two girls from the mainstream classes sat on either side of her and helped her stay quiet or showed her when to move.

My throat got tight and my eyes filled with tears.

How blessed we are to live in a country where we have such freedoms! Throughout history, those with special needs were considered a burden, a blight, something to be put away.

But not here in the United States of America.

We live in a compassionate society that goes beyond caring for the marginalized. We have an education system to help those who don’t fit into the typical mold. We have people willing to give their time to make life better and even amazing for those who cannot help themselves. Our children are willing to offer a helping hand to those in need.

If it weren’t for the soldiers and families who gave their lives to fight for this freedom and to continue to protect it, Rachel would not be where she is today.

Rachel is blessed. We are blessed.

Thank you for your service. I can never express how much it means to us.

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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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Small things, Big difference.

by Jennifer Dyer

Today I saw a blog post about doing service projects as a family. My first thought was something grandiose–serving Thanksgiving dinner at a shelter or putting together a giant toy drive.

The edges of my heart crumbled. I want my children to understand how to give to others and to serve others, but with Rachel and Autism … sometimes we are the service project.

As for doing a big-scale community project? Sounds as easy as walking blindfolded through a barnyard.

Do you ever feel that way? You hear about the great things others do, but you feel as if one more grain of sand at the top of your pile could topple everything.

So … I stepped back before I got my little chicken feathers in a knot.

First, I was comparing myself to others. Big no-no.

Second, I was thinking on the wrong scale. Why do I start with something huge and defeat myself? Shouldn’t I start small and work my way up?

I thought (and thought) about our family. Have we ever done a service project, all four of us together?

And then I realized… Actually, yes. For the last two years we’ve managed to fill and pack two Operation Christmas Child boxes. Doesn’t sound impressive, but getting Rachel to the store, picking out the items on the list, and keeping her from opening every package and hiding the contents in her ball pit is a victory. At least in my not-so-normal world.

True, Rachel got concerned when we left the boxes at church and tried to grab them several times, but in the end we did it.

I thought about other things that were do-able. Volunteering to teach a simple Sunday school class. Picking up a stranger’s trash can out of the street. Holding a door open. Making a meal for a church member who is ill. How about smiling at a person who is obviously different from you? It doesn’t have to be a red-carpet parade to be worthwhile.

Small things make a big difference.

How about you? What little things have people done for you or have you done for others that warmed your heart?

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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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