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

By Jennifer Dyer

t easy

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.

s bus2

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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I need a fork–solving communication problems in autism.

by Jennifer Dyer

The other day at Special Olympics practice I saw a friend who substitutes in Rachel’s class. After catching up, she told me about the last time she subbed.

She said something like, “Rachel kept asking me for something at lunch. She showed me her hand moving from her food to her mouth. I couldn’t figure out what she wanted. Was it chips? Her lunch meat? Poor girl. It took at least five minutes for me to figure out she needed a fork.”

My heart clenched. Rachel has barely learned to use a fork in the last few months. Before, handling utensils was too overwhelming for her. I try to remember to include her fork in her lunch, but I forget. And here she was trying to do what was right, but having trouble because she can’t communicate clearly.

For Rachel, I think communicating is like trying to drink a waterfall. Overwhelming. There is so much involved. Her mind can’t get it all going at once. Autism is like a veil over her mind, making the world more confusing. Add onto that apraxia of speech, which can be like having a blender mix up the sounds you want to say before it can get to your mouth. The process of putting sounds into words is daunting.

About six years ago, I velcroed (is that even a word?) little word pictures and symbols all over the house. Grandpa even bought us an expensive software program to build the pictures. I put them in the fridge where I put the lemonade so she could hand me the picture to ask for a drink. I put them on the grapes. On the TV. On the…you get the picture (har har).

Picture Problems.

But all they served was to give Rachel something to pile up and flap in her hands. It was too early. The pictures were such a disaster I gave up. We eventually used them again in a notebook when she was about six, but her therapist wanted us to move away from the pictures when Rachel started using more signs.

But signs are difficult. Sometimes people don’t understand. Rachel has trouble making her signs clear, too.

A multi-faceted approach:

So I think, at least for Rachel, a combination of communication systems has helped. Some people said it would confuse her, but Rachel uses all sorts of methods to communicate: she points, gestures, signs, shows me pictures, types in symbols on her ProLoQuo app on her iPad. She also uses some word approximations.

The signs are good because it is more close to real time communication, and she always has her signs with her. Pictures are great because they are usually clear. (For instance, when she wanted me to find a toy, she brought me a picture of her room and pointed to the toy.) The picture symbols with words on them are good because I think it helps with reading. (In addition to being a mom, I’m a speech-language pathologist, for what it’s worth.)

Some people also said I had to choose a communication system and stick with it, but I disagree with that too. We use different ways to communicate, so why can’t Rachel? Several of her speech-paths have agreed with me. Some haven’t. It probably all depends on our experiences.

I know my child. You know your child. If you think having different systems is overwhelming, keep it simple. But if you think she can handle it, different methods, I think, will help the brain generalize communication. For instance, the more Rachel learns about letters and putting words together, the more she understands language. The more she sees printed words associated with pictures, the more she learns to read.

Concerned using sign language or picture symbols will inhibit speech? Don’t be. It actually helps to build a foundation and positive communication experiences.

Worried your child won’t speak? I was too. I even got into a pretty heated discussion with a speech-language pathologist a few years ago over this. She had been taught past age five the brain lost its ability to be plastic enough to learn a skill like speech.

Research is starting to show the opposite. I remember from our Relationship Development Intervention (RDI) training, that the brain does continue to learn. Other programs are having success with teaching children to speak after age five. As I said, each experience builds on the next, especially with language. The important thing is to find some way for your child to communicate and build on that. There are problems like muscle weakness or stiffness that can inhibit speech, but Rachel doesn’t have those issues.

And realize this is a long journey. It doesn’t change instantly.

The brain is like a city filled with roads. Each experience builds new thoroughfares, and makes the roads bigger. The more pathways you can build, the better off the brain will be. The more you use certain “roads,” the bigger they get.

So, for Rachel’s lunch and her fork problem, I used my phone and PicMonkey photo editor to make her another little word symbol. I put a plastic fork on a piece of white printer paper and took a pic. I uploaded it to PicMonkey and added the writing. I printed it on tag board and put clear contact paper over it. Then I put sticky velcro on the back.

Pretty simple, once you have the supplies. (These are the ones I have on hand. The brands don’t matter.)

And I velcroed it into her lunchbox.

It’s a clear way she can tell someone to get her a fork the next time I forget. The more I do this the better off she will be. It fosters independence and feelings of success.

If pictures and words are helpful to your child, the good news is you don’t need those expensive computer programs any longer. I mentioned PicMonkey photo editor. I use the free version and my phone or symbols included in my Microsoft word program to make what I need. It’s fast and easy. And free!

Will Rachel ever talk? I don’t know. She’s trying. And I believe the brain is plastic and can learn. So, I have hope. Will it be easy? No. But the more she learns to read, the better she understands the structure of language. It’s a long road. Sometimes I feel like the bear who went over the mountain and sees…another mountain to climb. But I still have my hiking boots and a granola bar somewhere in the bottom of my purse. There is hope. It is dim at times and sometimes I lose sight of it, but it’s there.

For more examples of how I’ve used word pictures and symbols, see:

Preposition lessons with Rachel.

As the bus turns. (simple social stories)

 

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CPS, Special Needs, and Educating others about our differences.

by Jennifer Dyer

A disturbing situation…

A while back one of my fellow “ausome” special-needs moms called me in tears. Her voice shook, and she could hardly get her words out. “Someone from school called CPS on us.”

It wasn’t until a dozen phone calls and several days later that my friend found out the why. Turns out, the misunderstanding was rooted in the child’s sensory and food aversion issues. The situation had been under the supervision of the pediatrician and was/is a part of the therapy this family pursues. What is more surprising, everyone who has contact with the child at school knew all of this information. It was well documented with doctor’s notes and mom’s constant concerns and conversations with the teachers.

What happened?

Maybe it was miscommunication. I’m sure the person who called thought they were doing a good deed. On the other side, that person had access to the paperwork and could have done some more research into the situation.

Why am I telling you this?

This is not intended as a rant, but I want to encourage special needs parents to educate others about their children. And I want to encourage people to listen. This situation has been a nightmare of mine with all the issues Rachel has. For years I carried her diagnosis papers with me in case she became overwhelmed and stripped naked in public and someone got the wrong idea.

And people do question me…

A few years ago, Rachel’s  teacher mentioned people at the school expressed concern regarding the tangles in Rachel’s hair. Their first assumption was that I was a negligent parent. Fortunately, the teacher had gotten to know us and assured the concerned persons that Rachel had nothing to fear.

(In case you were wondering, Rachel’s severe sensory issues make it difficult to brush her hair and the fact that she constantly rubs a few spots on her head makes for huge tangles. We have had to cut out tangles, buy numerous types of hairbrushes, and use all sorts of conditioners. Here’s the best hairbrush solution we found.)

As much as it hurt to know people were questioning my parenting, AT LEAST THEY ASKED. And since I had built a relationship with the teacher and made her aware of the situation, she was able to answer.

CPS aren’t the bad guys…

When I mentioned my friend’s situation to a counselor friend of mine, she was understanding, but challenged me to see the other side of the situation. “If you died and your kids had to be taken care of by someone else, wouldn’t you want people to look out for them, especially if that anyone thought your child was in danger?”

Hmm.

True.

The counselor went on to say CPS workers are required to investigate every report they receive, but they aren’t waiting to snatch your children away. They want to work with you and to help you. She said as difficult as it is to see, remember that the person most likely filed a report because they were concerned about your child. And even if their intent was otherwise, the caseworkers want to help your family stay whole.

Easier said than done, but my counselor friend is right. There are children out there who need an advocate and to be protected.

I have hardworking friends who take care of children in serious and dangerous situations both as social workers and as foster parents. I respect and admire what they do. They have hearts to support and help children and families. And there are children who need help and won’t get it any other way.

But…I am thankful that the people who have been concerned about Rachel over the years have researched our situation before jumping to conclusions. And as Rachel’s mother, even if questions embarrass or annoy me, I am willing to answer if it helps people understand her more.

Fortunately, my friend’s CPS case worker dismissed the case, but my friend was hurt in the process. I’m not sure what she could have done differently in her case, perhaps have been even more vocal about her child’s issues? But I’d encourage others to be open and honest with information to help others understand your child, especially when the child doesn’t have a voice of their own.

And the next time you come across a CPS caseworker, give her a hug.

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Operation Brown Bear–looking beneath the surface to understand Rachel’s thinking.

by Jennifer Dyer

The adventure begins…

Rachel’s been talking about teddy bears lately. She will point to her iPad and show us a picture, usually a screen shot, of a bear. Her favorite is Dora’s teddy bear.

So, for her birthday we thought it would be fun to take her to Build a Bear to make her own bear friend.

The trip to the mall went well. We ventured there on a Monday evening where it would not be crowded and left time for her usual elevator ride and carousel spin.

Eldest stayed a few feet ahead and pretended not to know us in true preteen fashion, and we had to make a few trips to the bathroom, but otherwise no fire alarms went off and no one stripped naked.

When we got to Build a Bear, Rachel was fascinated by the stuffing machine. She couldn’t focus on picking a single bear, or maybe she didn’t understand what we wanted her to do. But she was certain of one thing: she wanted to watch that stuffing.

Sadly, money doesn’t flow as easily as the stuffing in their machines, so we helped her choose one.

She loved the machine’s whirr and grinned while the downy white stuffing circled inside the glass case. She laughed and hooted with joy.

We talked about names. She signed “brown” and “bear,” so we christened our new friend Brown Bear and pointed Rachel to the bear clothes. But she wasn’t interested. She wanted to do the stuffing process again.

Warning bells went off in my head. She really liked that stuffing…

Uh…oh…

That night Rachel hugged Brown Bear tight and kept him close, so I went downstairs with warm thoughts about her new best friend. It wasn’t until the next night that I realized…

Build a Bear, we have a problem…

I couldn’t find Brown Bear in Rachel’s room, so I went to the guest room where she likes to hide things. I would lock that room if I could, but unfortunately, one of her therapy swings is installed in that doorway, so open, the room is, Master Yoda.

And I found Brown Bear…all over the room.

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And that’s when I made a huge mistake…

I, shall we say, lost my own stuffing. “Rachel, what happened to Brown Bear?” I carried his empty shell to her room like a lawyer to a witness on the stand. “What did you do to him?”

Rachel isn’t able to express herself verbally and the nuances of expressing and reading emotions are still difficult for her, but I could tell I’d embarrassed her.

Rachel grabbed Brown Bear’s shell and shoved him under a blanket.
I, being on planet Not-Tuned-to-Rachel,pulled him out and showed him to her. “Rachel, why’d you do this?”Rachel sat on him. Get the hint, Mom, and drop it.I went downstairs, shoulders slumped. Not only had she destroyed the bear, there was another huge mess to clean. I had just spent an entire weekend cleaning that room with her. Now it looked like a Build a Bear blizzard had blown through. It wasn’t fair! Me, me, me…

The next day when I gathered Brown Bear’s scattered innards to re-stuff the poor guy, I stopped in the doorway. Half my hair went gray. Since Someone had made such a blooming deal out of the unstuffed bear, Rachel had decided she needed to cover up the mess. I had embarrassed her, so she was recovering the best way she knew how…with the contents of the linen closet and a giant mound of shredded tissue paper.

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The lesson?

I failed to take the extra moment to think through Rachel’s actions. Sometimes understanding Rachel is like mining for gold in the dark. It’s not easy, but always worthwhile. She’s complex with a vast intelligence kept under the surface by this blanket of autism.

So, why’d she do it? In this case, she loved the stuffing and wanted to experience that fun moment again. Instead of chastising and shaming her, I should have helped her re-stuff the guy without the verbal fussing.
Then I could have told her to leave the stuffing inside and sewn him up. I missed the opportunity to lead by example, instead choosing to yap my big mouth.

With autism it seems so much is about making every moment a teaching opportunity. Every action of mine models an action for Rachel. Each overreaction is a lost opportunity to connect with her. And, sadly, I often lose sight of the fact that it’s more of a marathon than a sprint with her. She needs repetition, consistency, and calm, assertive leadership.

The key? I think Dora says it best: “Stop and Think.”

P.S. I’m happy to report Brown Bear was admitted to the ICU at Grandma General and has almost completed his rehab. He should be back in action with reinforced seams this week.

Bear hugs, friends. May you keep your stuffing where it belongs.

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A decade with Rachel—big blessings come in tiny packages.

By Jennifer Dyer

 

A baby is born…

I can’t believe a decade has slipped by since Rachel made her first appearance on a sunny day in January. After a troubled pregnancy with multiple scares, a miraculous reattachment to the uterine wall, and months of bed rest, Rachel decided enough was enough. Although she was a month early, she was ready to make a grand entrance.

And it was grand. With 13 people in the operating room counting sponges repeatedly, Rachel readied to exit stage right. My heart lurched when both doctors leaned over my belly and gasped, saying, “Oh, my God,” in tandem.

They delivered her, placing her on my chest for about two seconds before whisking her to NICU. Fortunately, Rachel was released after only a few hours, and we thought all was well.

A baby with a destiny…

The next day, my doctor came into the room and cradled Rachel close to her chest. Her eyes glistened with tears, and she leveled me with a look. “I want you to understand how many times over this baby is a miracle. She should not have survived, but God intervened for her multiple times. This is a miracle baby. God has big plans for her.”

I tucked that into my heart and felt tension melt away. God had plans for her. Everything was going to be all right. I mean, big plans means big stuff, right? President? Campaign for international justice? Building water wells in Africa? Who knew how far she would go?

A shift in thought…

So, why in the next several years did Rachel lag behind developmentally? For a while, we thought she was deaf. The doctors also said she was just catching up to her peers. One neurologist walked into the exam room, glanced at Rachel sitting in the corner and stated, “There is nothing wrong with that child.” He left the room about two minutes later.

Enter Autism…

But just before Christmas, a month before she turned three, Rachel was diagnosed with severe autism. After the initial shock wore off, in some ways I was relieved. I finally had a reason my life was so stressful. What took most moms ten minutes took us hours. Each day was full of screaming tantrums. My picture-perfect home and life were lost under a mound of laundry and messes. Sleep was a long-forgotten memory. I scrubbed poop off the walls, furniture, and carpet daily…for years. We couldn’t go in public without Rachel stripping naked and screaming, or worse, darting through crowds like a cat with ten hounds on her tail.

And don’t get me started on the sensory issuesfood issues or her obsession with dumping the contents of any container.

Tiny prayers mean big things…

The other day I paused to look back. I remembered a tiny prayer spoken years ago. “Lord, I don’t want to be stressed all the time. Help me to be more laid back.”

Not the most eloquent of prayers, but meant from the heart. I was tired of being Stressed-Out Jennifer. My perfectionism held me in a gripped fist. I was sick of worrying about the perfection of my house, my bank accounts, my body, my…everything.

Have you ever heard that saying, “Be careful what you pray for?”

Yeah, I’ve heard it too…

Rachel saying hi.

Rachel moving ahead.

Sadly, sometimes we have to take a ride through hell to gain a deeper understanding of God’s grace. Sometimes we need trials to shape our hearts into something beautiful. And sometimes we have to walk through the deepest of valleys before we learn to look up.

Do I wish things could be different for Rachel? Of course. When I look at her typical age peers, my heart squeezes so tight it shatters. But when I see Rachel’s beautiful smile or hear her say “Elmo,” my cracked heart becomes soft again. It is as if I see the sunrise for the first time whenever Rachel says “Mama”, eats a bite of an apple, writes her name, signs her sister’s name, and signs “Grandpa.”

Finding hope…

I’ve learned to find beauty in the tiniest of moments and to see rays of hope in the darkest hours. I’ve learned that messes don’t matter and that the external fades away (just ask any mom after years of sleep deprivation).

Rachel knows she is different—she’s very smart. But it doesn’t bother her. She is the picture of joy, especially when left to her favorite mediums of glue and paper or when jumping into a pool.

Lest I make this all about me…

I’ve seen a depth of character in Eldest that is born from a life of trials. She was right beside me through all the messes and tantrums. She had to ride in the van next to a naked, screaming child. And she was the one Rachel would crawl in bed with each night–although Rachel doesn’t know how to interact, she doesn’t want to be alone. And when Eldest is gone, she is the one Rachel asks for…repeatedly. (The girl doesn’t give up. Ha!)

Rachel has made a difference in too many lives to count. A hug from Rachel is enough to bring tears to people’s eyes. Hundreds of people who have met her have a changed view of the world. She gets into hearts and makes them grow several sizes. Our family will never be the same, and we are all better for it. She brings out the best in people, even when it’s people forgiving us for flooding their houses…twice.

And you know what? Who knows what Rachel will achieve in her future? Look at Temple Grandin. But even if the world were to end tomorrow, I’d venture to say Rachel has accomplished more in her first decade than many in their entire lives.

Happy birthday, my precious Rachel. It’s OK that you don’t always like the singing. I know you’ll watch it a thousand times on your iPad and love every minute of it.

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Taking Rachel to the mall.

by Jennifer Dyer

The other day, hubby and I decided to go to the maul mall. In a stunning move, Eldest opted out, but we knew Rachel would love it, especially the escalators and indoor fountains. (The trick would be keeping her from jumping into the water.)

Rachel didn’t always like going out. When she was three, an outing to any store would end in her screaming and stripping naked. And Mom would end up in tears. The sensory overload to her system must have been horrible, all the smells, sounds, people, noise…everything unpredictable and random from her point of view.

If she wasn’t screaming, she was darting away from me like in this story. I couldn’t go anywhere in shoes that did not get traction. Through years of therapy, we slowly worked on her staying beside us. (For more on how we decreased her darting behaviors, see here.)

We also learned to plan shorter outings, and did all kinds of sensory therapies to help her nervous system calm.

So, off we went to the maul (I keep doing that) mall, armed with her iPad, a packed lunch, and a bag of activities.

Our first destination was Fuddruckers. (It’s by the mall and has GF buns for their burgers. Yum-o. Plus, it’s kid friendly.) This, however, presented our first challenge. Rachel has very narrow food preferences, so what to do?

First, we examined our goals.

We wanted Rachel to sit in the restaurant and behave appropriately. So, the food was secondary. I brought her packed lunch, but ordered food I could share with her.

While ordering, though, Rachel wasn’t focused on the food. She made the sign for potty and yelled “Pah!” so many times it was amazing I didn’t order my cheeseburger with a side of toilet.

Hubby went off to find us a table, and I took Rachel to the restroom.

Which lead to our next challenge.

My anxiety level amped at the thought of traipsing through a public restroom, even though we do it all the time. As I mentioned in my last blog Walking with Rachel, I did the deep breath routine. Keep calm. It’s about the time with Rachel, not getting something huge done.

Rachel and I entered the stall together. When she FINALLY finished, I had to remind myself again that I had a goal in sight. This was about helping her grow more appropriate and independent, not rushing. So, I watched to see how she would do with the slide lock on the stall door. I had to watch her fail (agonizing) a few times and then walk through it step-by-step, but she learns best through visual and tactile methods.

We were ten minutes into our outing and hadn’t left the bathroom.

After we escaped, Rachel wanted to see the arcade games. I froze. I can’t recall how many times I’ve told her no in public and been rewarded with a huge tantrum. Sometimes I feel like the rat in the maze that’s been zapped so many times its fearful of making any sudden moves.

I had to remember the purpose: Appropriate behavior in a restaurant.

If this went south, we could get our food to go. I took a deep breath. “Later.” I grabbed our drinks and showed her to the super high tech drink machines. Whew. Redirection successful. Crisis averted.

We only spilled our drink once, so another success. I pointed to Hubby and asked her to walk with me to the table. I was afraid she would dart, but she stayed beside me. Yay.

We sat in the booth for an entire ten seconds before she started asking about the games again, but in the midst of her barrage, she passed me napkins and pressed her hands together to pray. I brought in her iPad to keep her entertained, if need be, but she actually ate some of her lunch with a fork.

Did the people in the restaurant stare at us? Yes. But did Rachel have a meltdown and strip naked? Nope. Woohoo. I’ll call it a success.

We managed the rest of the ten minute meal without major issues, and Rach was rewarded with some time in the arcade area where she played with the steering wheel on a game that wasn’t plugged in. Even better.

The mall was next.

Again, we kept clear goals in mind.

Yes, we were there to buy Rach some dresses, but I could always order them online. The goal was to have Rachel stay by us and not throw a fit when told no or waiting for short amounts of time.

Here is how we managed:

We alternated fun activities for her with each short shopping goal.

I grabbed some dresses for her and pointed out the escalator. As soon as I purchased our item, we rode the escalator.

We walked around the upstairs and took an escalator down. We looked in one store and went to the play ground. We stopped at a fountain before glancing around another store.

There were a few moments she had to wait, and without two of us it might not have been nearly as easy, but I kept everything to a minimum. If I didn’t find something within five minutes, we moved on. I tried on one pair of shoes off a sale rack, but nothing else. We kept moving as much as possible.

The trip was more about success for Rachel than getting stuff.

And we only stayed about an hour. That way none of us got too tired and lost our patience.

Mission accomplished.

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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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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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