OCD, my big, shameful blow up, and other ways grief affects my daughter with autism.

By Jennifer Dyer

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I’ve always wanted to be honest here. Sometimes I still hold back, fearing what will happen if I let others see my raw emotions over the struggles of raising a child with special needs. I suppose that’s why I haven’t blogged much in the last year–too many painful moments I didn’t have the strength to share. Happy moments, too, but so little time to write. But as I reflected over this past week, I’ve decided I’m probably not alone in my desperate thoughts or my moments of deep frustration. So, I decided to share. I hope you know you are not alone. I hope I’m not alone, either. Autism isn’t easy, but neither are so many of the other challenges we all face.

In early March, Rachel started talking about field trips. It began with her signing “Brown” and “Bus,” meaning she wanted to take a brown-bag lunch on the bus, which is what happens as part of all her school field trips. She also signed, “Duck” because on one field trip to Mayfest we saw a person in a giant duck suit.

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Great. Mayfest wouldn’t happen for more than a month, the duck might not be there, and the school probably wouldn’t go there again.

But, being the language-development-minded mama I am, I found the sign for field trip and taught it to her. Then she asked for “brown,” “bus,” “duck,” “field trip.” Pretty amazing.

Or so I thought.

About ten thousand brown-bus-duck-field trips later, I thought: What. Have. I. Done?

Then she started adding “seal” (clapping) and “fish” because someone told her the next field trip would be to an aquarium.

Friday, when we got home from her horse therapy, she cornered me in the kitchen. “Seal, fish, brown, bus, field trip.” I tried to tell her “later,” but she thought I wasn’t understanding she wanted to go the aquarium on a school bus That Minute, so she clapped louder. In my face.

She repeated the signs and clapping every few seconds, maybe ten times a minute. I’m not in MENSA, but that’s about 600 times an hour. I tried acknowledging. I nodded. I told her “later.” I talked about the aquarium. I talked about her horse. I talked about food. I tried to get her to jump on the trampoline. She communicated louder. In her case, that meant screaming, hitting her head, and more clapping in my face.

The shut-ups started deep in my chest. ShutupShutupShutupShutUP! Before I knew it, the shutups and other things leaked out my mouth. My words started quiet, but increased in volume. “I can’t tell you! I can’t control it! I can’t get a bus here or plan a field trip! I can’t talk about this anymore!”

Why did I ever wish she could talk?

Even as I thought that, an ocean wave of shame plowed over me. How could I be so calloused? Yes, I’m desperate for her to talk. Desperate to help her strive toward an independent life. I long for her to communicate, but not like this. Not the same thing over and over and over and over. It’s not communicating. It’s obsessing.

She clapped more, screamed, cried, kicked. I finally escaped to my water closet. I sat on the toilet and stared at the hole knocked into the wall by Rachel during numerous tantrums, many of them over wanting a stupid field trip.

For a moment, I envied my husband’s aunt, dying from cancer as I wrote this.

A wave of shame tsunamied over me. A hurricane of guilt followed. No, no, no, no, no. I didn’t mean that. I’ve already faced possible death from my own battle of cancer. I didn’t want to die. I just wanted to live to be a mom, I begged God to give me more time to be a mom.

But I couldn’t help thinking…I didn’t know, I didn’t know, I didn’t know how hard, hard, hard being a mom would be.

Even as I drowned in shame, I still envied our aunt, about to enter Heaven where communication disorders shouldn’t exist. Where pain and impatience shouldn’t exist. Where field trips, if they do take place, won’t be the subject of E.V.E.R.Y. conversation. Nor would I have to wonder “What Would Jesus Do” because I would be able to Watch What Jesus Does and thank Him for doing it instead of me.

What kind of person was I to think such horrible thoughts?

Probably a normal one who hadn’t slept well in a decade with a child screaming in the next room about a field trip.

I leaned over my knees. I wanted to escape. I wanted things to change. I wanted to see a day where Rachel wasn’t severely disabled. I. Hate. This.

My thoughts swirled around. “It’s not fair, God! I see so many families on Facebook. At the park, at schools, at the beach. People on vacations with their happy, shiny lives.”

I know it’s not all carnival games for them, either, and I know I don’t really mean it, but sometimes I find myself wishing I could have THEIR issues instead of mine.

Rachel still screamed, so I jumped into the shower and hid under the spray, my anger swishing and washing down the drain. Finally strong enough, I exited the shower and tried again.

And. She Kept. Going. Screaming and crying. Kicking and stomping. I knew that night would bring another middle-of-the-night bout of screaming and crying and kicking. She’d ask about a field trip, over and over. More holes, more damage, more moments of madness.

I called my sister. “I can’t live like this! I can’t do this for another forty or fifty years. It’s not fair, not fair, not fair. I can’t help her!”

In that moment, as I sobbed on the phone, I realized THIS wasn’t about this.

This screaming from Rachel wasn’t about a field trip. My screaming at Rachel wasn’t about field trips.

This was grief.

Earlier that day, we had stopped by my mother-in-law’s house to say hello and check on our aunt. I didn’t intend for Rachel to see her–the door was closed–but Rachel sensed her presence anyway and ran into her room. She stood in the doorway, signing “I love you,” but our aunt didn’t wake, was too weak. Rachel signed “Up” because she wanted her aunt to get out of bed, to talk to her like normal, but she couldn’t. I told Rachel she was just tired and that she loved Rachel, too, but I knew she wasn’t able to wake because she was so close to the end of her life.

A sharp arrowhead seemed to be stuck in my throat. I couldn’t swallow past it. For years, our aunt had reached out to Rachel, had worked hard to engage her. Rachel wouldn’t always respond, yet here she was initiating a conversation.

And her aunt didn’t get to see it.

It. Killed. Me.

And so, in my dark moment on the phone with my sister, I realized Rachel’s obsessive behavior was about anxiety, about my grief and the strange way I’d been acting, about the way her aunt didn’t talk to her, about the world not making sense.

Sometimes I forget how much Rachel sees and feels, even if she doesn’t exactly understand it all. And it’s amazing how much my stress level affects her anxiety. As her anxiety goes up, her repetitive behaviors and obsessive thoughts increase. It’s all linked, only I forget that I have to be the one who stays on top of that.

As those thoughts lined up like cars on a train, I thought about my personal struggle with death, I remembered the love I’d felt for my children in that moment. I grasped it with the tips of my fingers, a jagged little piece of hope.

I pulled it close. Yes, I could do this one more moment. One moment at a time. It’s difficult, impossible. I clung to my faith that gives me hope that someday things will be different, even if it’s not while I live on this earth. I clung to my faith that tells me God will give me what I need in the moment I need it. And I clung to my faith because sometimes it’s the only thing keeping me sane.

The next day we made some changes. We borrowed my mother-in-law’s recumbent bike as another way to help Rachel exercise more. The more exercise she gets, we hope the less anxiety she will experience. We took Rachel for a brown-bag-lunch picnic at the park, and in answer to my prayers, our aunt woke up and was able to see Rachel tell her “I love you” only one day before she died. And I’ve worked on my own emotional state. Like the Dog Whisperer says, a calm, assertive state of mind in the family leader creates relaxation and a sense of calm in the rest of the pack.

 

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Mockingjay cake!

mockingjay cake

My daughter is a big fan of The Hunger Games series, so she decided she wanted to watch the newest movie for her birthday party. So, I needed to make another Hunger/Games-themed cake.

Cake from last year:

I used a toothpick, a table knife and some edible modeling dough to form the bird. To make the ring that sits under the bird, I rolled out the dough like a snake, put it on the flat rim if a glass bowl and smashed it down. I know, we’re super high tech here. To get the brassy color, I sprayed the bird and ring with black edible spray paint then layered that with gold edible spray paint. It took a few layers to get it right. Then I brushed yellow gel over the top to make it shiny.

 

For the fondant, I roll it over the cake then steam it with my iron to make it shiny…the only time I seem to use the iron, BTW.

 

Rach loves helping me. To her, it’s like playing with Playdoh.

 

To get the fire, I used a combination of red, orange and yellow sparkle gel frosting and brushed it into peaks with a paint brush.

I also chose to cover the board edges with the black fondant. I thought it looked better than the silver board.

 

And I tried not to cry when we cut it up and ate it.  Ha! It turned out super cute. The girls loved it and said I was cool. You can’t get a better compliment than that from a bunch of 13 year olds!

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Special needs prom prep.

The special needs prom is around the corner, so Rachel and I are having fun getting ready. The theme this year is Superheroes! Right up my alley!

We’ve been cutting out sparkly paper, cutting out fondant and baking cupcakes! Love it! I may never get all the glitter cleaned up, so it’s a good thing I like it. 



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Pants up. AKA Mommy loses her cool.

by Jennifer Dyer

It might sound like this will be about fashion. Not really. Yes, wearing saggy pants leads to perilous moments of ankle waddling, but this is about my daughter with autism and her sensory issues.

Rachel likes to pull her pants down. I don’t know why. I suspect the pressure of a waistband on her tummy while sitting is painful. If any kid has gut issues, it’s my sweet girl. We have most of her tummy troubles under control with diet, but I imagine she still has discomfort.

So…the pants. We buy the softest, most stretchy leggings possible. I buy her long dresses to wear over those. But if it were up to her, she’d skip the leggings.

In the car, on the bus, wherever she goes, Rachel likes to sit on her bare bottom. She pulls down everything under her dress and sits on the seat commando style. I don’t know why. I never pretended to understand her sensory issues. But I know that’s at least a part of where this stems from.

I understand it’s difficult for her. But I also understand that in society, pants are not optional. Maybe in some places…but not in most. School, grocery stores, libraries–pretty much pants-required kinds of places, or at least they are pretty adamant about covering of your hindquarters. The pulling down her leggings to sit has become a big issue at school, especially. It’s keeping her from going to general ed classes and mixing with the other kids. It’s affecting so many areas of her life.

While riding in the backseat with Rach, I asked her to pull her pants up. She did about halfway. A second later she yanked them down. We rinsed and repeated, so to speak, each time with her pulling her pants back down a second later. I know this is beyond a sensory issue–it’s compulsion taking over at this point, but she has to learn. I reached around to keep her pants up behind her back. “You have to keep them up.”

She screamed and said no.

I took a deep breath. I hate confrontation. I hate hearing her cry. I don’t want to make her miserable, and I have compassion for anyone with sensory issues. I had them myself. But she seriously has to keep her pants up! I’m her mother. It’s not my job to keep her happy. It’s my job to develop her character. I have to be strong. All of that ran through my mind as we struggled.

I was doing pretty well to keep my cool, but Rachel grabbed my hand and squeezed the kung and the fu out of one of my bent fingers. I jerked away, but she has a death grip. My brain quit working, adrenaline pounded through my limbs. “Get away!” was the big message in my mind. I smacked her thigh and yelled, “Stop!”

Eldest, sitting in the front seat beside Grandma, whirled around to see what happened. Grandma veered and glanced in the rear-view mirror.

I don’t hit. I occasionally spank, but it’s rare these days because it escalates Rachel’s behavior rather than helps it. When Eldest was little, there was usually a verbal warning of “I will spank you.” And then it was done in a calm manner.

There was no warning here. I didn’t hit hard, but shame washed over me because it felt like I’d acted rashly. I felt liked I’d done something terrible even though in retrospect it wasn’t as bad as I’d imagined it. In fact, it was an immediate response that communicated to her she needed to stop. And I truly didn’t hit her hard enough to even make her thigh red.

Regardless, in that moment, I wanted to curl up and hide because I’d let myself lose control of my emotions. I looked out the window and noticed a meadow full of pink wild flowers. A powerful urge washed over me to jump out of the car and run screaming through the grass and melt into shadows.

But motherhood isn’t about running away. It’s about standing firm, putting my own feelings aside and doing what’s best for my family. Yet I’m not a robot. I have feelings, I feel pain, too, and I get over stressed.

I took a deep breath and apologized to Rachel for losing my temper. I don’t know if she understood me or not, but I told her I should have pulled away. It’s not OK to hit people in anger or in fear. But it’s not OK to hurt people, either, and there are consequences for that.

In retrospect, we shouldn’t have started that battle of the pants on that day because I was too tired to begin with and didn’t feel well. Those big battles have to be started when I’m up to following it through for the long haul. We’re going to try again with her behavior therapist and work our way toward changing her behavior patterns that way.

Furthermore, I need to stop being so hard on myself. I know y’all understand. We have these ideals we hold ourselves to, but fall short. Or people who don’t understand our circumstances criticize and wound our hearts. Sometimes, though, the failure is much greater in our minds. Sometimes we have to offer ourselves grace and move forward.

Grace, it’s often the greatest, but most difficult, gift we can give ourselves.

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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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Special Olympic practice–if at first you don’t succeed…

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Last year we took Rachel to Special Olympics (SO) track and field practice. At first, she walked willingly to the track, excited to see the people. Some had been on the SO swim team we had tried. But then she heard the whistles. And the cheering. And the clapping. And we ran. Once.

She was finished after that. She sat on the track. It took two of us adults to carry her off. Repeatedly. She also kept telling me she needed to potty, her coping mechanism. The third practice Rachel hid in the closet at home and refused to come out.

I could have pushed her last year and made her comply. But I knew in the long run she would hate going, so I didn’t force the issue.

This year we decided to try again.

And things are different. Rachel wears tennis shoes now! Big change from the fuzzy boots she insisted on wearing last year.

She wanted to go potty, but I told her no and she gave up asking after the tenth time.

Rachel also is willing to run a little. True, we are like turtles out there, but she laughs while we go. The whistles bother her, but she only covers one ear.

She also can stand in line better and is more interested in throwing the softballs. Overall, she is calmer and seemed to have a good time–at least I didn’t have to wrestle her at all.

What’s my point?

With autism, and kids in general, sometimes the long way around works. I told the coach I was looking at this with a long-term perspective. We might not compete for several more years, but by going at a slow pace, Rachel learns to think of track positively and is forging friendships I hope she can cherish in the future.

At this point, she does little more than smile and give high fives, but I think of each experience as a tiny brick. Put enough together and you have a sky scraper.

May you build sky scrapers with each smile, each hug, each cherished moment.

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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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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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We made it to the bus!

by Jennifer Dyer

This morning was a big day in the Dyer household. After much deliberation and paperwork, today would be Rachel’s first time to take the bus to and from school. I had plans for this day. I was going to take lots of pictures. Give the bus drivers cookies for taking care of my baby. Have a good cry, all by myself, because my baby was getting more independent. Hmm… Think it worked that way? Not in this house.

As we tucked Rachel into bed last night, I thought, Here’s an idea. Let’s give her something to look forward to. Let’s talk about the bus coming in the morning.

At four in the morning when Rachel kept coming in to stare at me, perhaps wondering if it was time to get up, I had another thought. It wasn’t ‘nearly as chipper as the one several hours earlier. Eek.

At some point, she finally fell asleep. Which was great, except we had to get her up. We stumbled through the routine–I’m still wearing a pair of shorts I found under my bed–but I had her outside and ready for first-bus-day pictures before the bus got to our house.

Except, Rachel didn’t understand she would get on the bus at our house. She thought we had to go to school to catch a ride, the same way she always does for field trips. She hopped in the car. I coaxed her out. She ran back into the car, pointing at the driver’s seat as if to day, “Let’s go, crazy lady!” I waved her out.

By the time the bus chugged around the corner, Rachel was back in the rear of the minivan. Eyes wide, she hedged out of the car, glancing at me, forehead wrinkled. Could it be?

Sadly, she had tucked her dress into her shorts and her hair was sticking up in three places. She’s taken my phone–formerly set to take pictures–and had it on a setting I’d never seen.

The dog, who’d been behaving like a gentleman, decided the bus was there for him. He lunged. Sadly, I was attached to the other end of the leash. Rachel must have decided to race him … while I was still trying to pull the dress out of her shorts.

Here come the Clampetts! 

I also made a new discovery. The bus driver’s assistant is terrified of dogs, especially big dark ones that run full tilt toward her first thing in the morning. And where were the cookies? Oh, yes, I’d forgotten to make them. So, instead offering an overture of friendship and goodwill to the people taking care of my precious verbally-challenged autistic child, I’d given them a jolt better than any coffee beverage could.

Yay. For. Me.

And as for pictures? I got one as the bus drove away. Another cheer for mom.

What about the good cry? Still haven’t had time to get it done. Maybe later…

I did get this video of Rachel while we waited for the bus in between her forays to the car.

Rachel waiting for the bus

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