Archive for April 25, 2012

Field trip and special needs

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Cattle drive at the stockyards

Yesterday Rachel’s class went on a field trip to the Ft. Worth stockyards. I cringed when I heard the location. The stockyards? Sure, that is a great tourist destination for typicals unaffected by a myriad of sensory and communication issues. But Rachel with her autism? Not so much.

I sucked up my fear and signed up to go. I told myself just because it will be difficult doesn’t mean Rachel shouldn’t get to go.

The trip ended up being better than I expected. Rachel has made great strides in her ability to stay with me and to wait for me–something I never thought I would see. I believe a lot if that progress is due to some work we did with our RDI (Relationship Development Intervention) therapist.

Anyway, while on the trip I had an epiphany. Rachel may have grown a lot, but I have some changing to do. Let me explain:

Rachel and I sat by ourselves on a riser to watch a horse demonstration. I thought everything was fine until one of the teachers came over to adjust Rachel’s dress because her underwear was showing. I am sad to say I hadn’t noticed. I am far too used to Rachel pulling her dresses up. Even though she wears pants now, she still pulls them down sometimes. Why, I don’t know, but I somehow have learned to ignore it.

The incident made me think. When Rachel was little, I fought to have the world change around her to some degree. For example, I had to adjust things in the house. Many things are locked away, such as my speech therapy toy kits. They are stored in our attic behind a keyed door because Rachel will get into them otherwise and dump them all over the floor. We have no Legos in the house for the same reason–our feet couldn’t take it.

For years, I’ve had to apologize for things like Rachel screaming in the library and grocery store because of her sensory issues. I’ve also had to explain to people about her autism when they come to our house. In other words, I’ve bent the world around her autism.

At the stockyards I realized the entire world cannot be bent around Rachel and her autism. I also need to bend Rachel to fit into the world.

It was a painful revelation. In a sense, I felt like a failure because I hadn’t realized what I was doing. (Feelings of failure and despair are constant companions for me as I parent Rachel because I so often don’t know what I am doing.) My gut tightened too because this means more hard work for me. Rachel is resistant to doing anything someone else’s way. I have rarely encountered the kind of will Rachel has, so helping her see things from another perspective will take time (lots of it), perseverance, and lots of energy.

Pray for me, my friends, and I will pray for you. Parenting is not for wimps!

Great article on RDI autism therapy.

http://www.autismspeaks.org/what-autism/treatment/relationship-development-intervention-rdi

We have been very blessed by the tools we learned in RDI. This article is a good summary of what Relationship Development Intervention entails and seeks to remediate.

Special night at the special needs prom.

by Jennifer Dyer

Dancing at the Special Needs Prom

Every year our church holds a fantastic prom to serve the local special needs community. When I first heard about it, I thought it was a great idea. Perhaps not appropriate for Rachel yet, but wonderful still.

Several people urged us to bring Rachel, even for a few minutes, but I resisted. Loud music, multi-colored light, and Chick-Fil-A nuggets all seemed like sensory overload waiting to happen.

So, I decided I would merely lend a hand decorating ahead of time and bring some cupcakes. I had no idea what I was in for!

First of all, I wish I had some pictures of the room! The theme this year was Out of This World, and they went out of their way to make it amazing. There were adorable decorations everywhere. Plus, the team asked a local group that dresses in Star Wars costumes to come lend a hand.

The day of the prom was super busy for our household. The girls went horseback riding and we had a school carnival. When I rushed into the house at 6 p.m. to grab my cupcakes and get them to the church, attending a prom was the last thing on my mind. Apparently Rachel had other ideas.

I know she didn’t realize she was going to a dance, but she knew wherever Mama was headed, she was too. So, she and the dog hopped into the car and off we went. When we arrived at the church I wondered what to do. I couldn’t leave Rachel in the car, so I handed her a tray of cupcakes and prayed she wouldn’t drop them. We headed inside.

Peanut Butter Planet cupcakes

Rachel’s face lit up when we entered the decorated gym. She handed the cupcakes to the nearest person and ran inside, turning in circles to view everything, including the twinkling lights. I stared at her and wondered where my autistic child had gone. This child wanted to be the life of the party!

Ladies in beautiful dresses moved around us, making me more aware of my sweaty t-shirt and dusty jeans. My hair had been through five hours of windstorms and my white shoes were brown with dust. I felt like the duckling among swans. Rachel, on the other hand, didn’t care one bit. She just wanted to party.

A sweet friend offered to watch Rachel while I ran the dog home, since it seemed we were in for a long night. As I left, Rachel took off in the direction of the DJ booth. When I returned, Rachel took me back over to her spot by the lights (and Bobba Fett) and proceeded to dance with abandon.

The great thing was no one told her to be quiet and no one worried that she was dancing wrong. Yes, one of the other attendees did look at Rachel with a strange look on her face, as though mystified by Rachel’s rapid dancing orbit around me, but she didn’t worry about Rachel for long. After an hour, Rachel stopped spinning and looked glassy-eyed. I was afraid we were about to ruin someone’s shoes, but she rallied. Whew!

Darth Vader waiting to boogie

What a joy it was the see the kids getting down with Darth Vader, a Storm Trooper and a guy in an astronaut suit. In addition to the beautiful decorations and many volunteers, including the entire youth group that came out to dance with the attendees, each prom guest was introduced into the room, being applauded by a host of Star Wars characters and their other friends. They were treated like royal visitors coming to a palace. Beautiful. The guests were delighted to see friends and, I’m told, as soon as it was over, they were already talking about next year.

Thanks, MBC!

Getting over my self…

by Jennifer Dyer

Rachel and Bart

Have you ever felt as though you just couldn’t keep going? Tasks as simple as fixing your hair or putting on a nice outfit seemed daunting?

It’s been that kind of week for me. Just getting out of bed is a struggle, and not because I am tired. I don’t want to face the day. Tackling each chore is like showing up to climb a desert mountain with only flip flops for shoes.

I know some of this is wrapped up in the grief and sadness I feel over my dog’s passing. We have lost a family member, so the dynamic at the house has changed. Yet, I feel guilty because life is easier without having to constantly move a 100-pound dog from room to room. Life is less stressful because Rachel didn’t like Missy, mostly because Missy’s loud bark upset Rachel’s easily unbalanced sensory system. I understand that, but it still hurts that my child didn’t like the dog I loved so much.

To make matter more complicated, Rachel has warmed up to our new dog Bart since Missy’s passing. She even played peek-a-boo with Bart the day Missy died. I should have been amazed and delighted to see my autistic child initiate a social routine with our dog. Instead, a surge of heat flashed from my chest to my eyes. Why didn’t she love Missy like that…? Then the next moment a cold dread spread over me. How can I be so ridiculous and selfish that I can’t even celebrate my child’s social/emotional victories? Ack!

As a mom, my life is wrapped into so many areas, sort of like Christmas lights. No matter how carefully they are stored, they still come out of the box looking like a giant ball with a hairy spider living in the middle. There is no disentangling one strand from the other.

Wednesday afternoon I found myself lying in bed, unable to sleep, but unwilling to get up and move. Everything was too much to handle. Not only my grief, but also my guilt about my shortcomings as a mom, not yet solving all the issues I needed to face about Rachel, and all the others problems of the world I had decided to pile on myself. I didn’t want to do anything I needed to do. I didn’t even want to do something I would enjoy. I wanted to feel sorry for myself and hide from life. The place I often went for comfort and hugs when life spun out of control–Missy–was gone.

So I stayed in bed. Who cares that my kitchen counters and the “laundry chair,” as eldest calls it, would have to be excavated by a professional archaeology team? Who cares that my hair looked ratty and I was wearing the same sweats I wore yesterday? Yes, the dog needs walking, but so what…?

When it was time to pick up the kids from school, I glanced in the mirror and cringed. I looked ten years older. Not only that, I felt older. It was time for one of THOSE talks with myself.

First, I had to face that I had placed too much of my comfort finding in Missy. The only true place of constant comfort is in Jesus. I’m not saying people and animals and hobbies lack comforting ability or are wrong and bad. Not at all, I just think I had misplaced my own priorities.

Second, it is okay for me to feel sad for a while. However, I still have responsibilities. People depend on me. So, I must make a choice: Stop feeling sorry for myself or continue wallowing. It wasn’t an easy choice, but I made the decision that I would resist the urges to hide from the world. I would get up and get back involved.

After picking up the kids, I kept true to my decision. We baked cupcakes and made decorations for a charity event. Not only that, I made myself write and change out of my sweats. Plus, I took our new guy Bart on a walk–well, he took me for a run. It wasn’t pretty, but I did it. I also listened to the Newsboys newest album God’s Not Dead, which uplifted me. It also helped to drown out the sound of me gasping for breath as I tried to keep up with Bart’s greyhound ancestry. Whew!

My friends, may the hope and grace of the Lord Jesus, who is very much alive, lift you up today.

Loss, grief, and talking about the joy of Heaven.

by Jennifer Dyer

Missy

Missy

Watching my elderly Labrador’s health decline was painful. Each morning, I would kneel beside her. After checking to make sure she was still breathing, I would wrap my arms around her strong neck for a hug. She was my safe spot and my constant companion. On the days Rachel’s autism spun the household out of control, I held Missy’s neck and some of the tension subsided.

Even though she could be a mess maker herself, Missy tolerated the constant activity around her like a champion. She never growled at the children and never complained that Rachel didn’t always like her. Even the few times Rachel kicked her, Missy never retaliated. She was a special friend. Plus, she was a safe place for me–since Rachel didn’t like her, I could snuggle up with the dog and have a moment of peace.

The last few weeks were tough. Missy couldn’t stand up any longer and had no appetite. She finally became so ill that I had to do the only merciful thing I knew to do, but it was so hard.

My throat tightens as a write this. Letting a loved one go is so painful, so difficult, so overwhelming. Tears choked my voice as I said goodbye, and afterward I was numb. I felt as aimless as a leaf tumbling in the wind.

When my dad and I returned home from the vet’s office, my sister and dad, both dog people, whipped into action. My dad steam cleaned the carpet from the tough night before, and my sister cleaned the kitchen. I washed all the towels, eliminating many of the reminders from the nightmare of Missy’s last night. I made a play date for eldest and gave her lots of hugs, all the while keeping my tears in check. Even though I was active with my body, my mind was disjointed. All I wanted to do was go to bed. I even put on pajamas after my dad went home. I just wanted to disappear.

Circumstances, however, did not allow my “going to bed” plan to work. My nephew needed entertaining, Rachel was wild, and the house smelled like cleaning supplies. So, I took the younger kids out while hubby stayed home with eldest. We spent the day at other houses and outside, enjoying the sunshine. When I put eldest to bed that night, she held onto Missy’s collar and we both wept. Tears poured from our hearts. Death is such a terrible part of life here in earth, yet it also reminds us to cherish what time we have. After a few minutes, though, I became overwhelmed. I had too much grieving to do by myself.

The next day was Easter, which meant I could not stay in bed again. Instead, I thought about the timing of Missy’s death. Easter is the time we celebrate Jesus rising from dead and conquering death. There is hope for eternity. My heart sang praises my mouth couldn’t–I kept thanking Jesus for offering us Heaven for eternity.

That night, eldest and I again cried together, and this time I was able to talk to her in more detail. Eldest and I spent an hour talking about Heaven and Missy.* We wondered if Missy were playing fetch with Jesus and Rachel’s twin (we’ve decided whoever in our family gets to Heaven first can name that child Madeline or Joshua). We decided Jesus can throw a ball really far.

We laughed about Missy getting to eat whatever she wanted. When eldest suggested Missy could have all the trash she wanted, we decided there probably isn’t trash in Heaven. We talked about how Jesus will wipe away everyone’s tears when they enter Heaven, there is no more pain, and most importantly, there is NO death. The lights are always on and there is never any hunger. We pictured huge fields where Missy could run and amazing beaches where she could run with Madeline or Joshua. We let our imaginations run wild then decided our imaginations weren’t big enough to picture the true majesty of Heaven. Through Missy’s death, we made Heaven a very real place in our minds.

The day before Missy died, I heard a FamilyTalk program about a new children’s book called Heaven: God’s Promises for Me by Anne Graham Lotz. As Missy died right before Easter, I wasn’t able to get the book, but I hope to get it this week. It’s a beautiful story book about Heaven and what to expect there. It, like my conversation with eldest, helps youngsters (and adults) form a better mental picture of the joy that awaits us in Heaven. Eternity used to scare me, and sometimes it still does, because I just can’t picture it. Until the last few years, my only picture of Heaven was angels strumming hearts on clouds and a big escalator leading to the gates–mostly from Tom and Jerry cartoons. Not the best source for good theology…

Though I still want to hide in bed and am still going through the stages of grief, the joy of Heaven and the reality of what Jesus did for us on the cross has given me more hope than anything else. So, when people ask me how I am, I am trying to remember to tell them: I am blessed.

Be blessed, my friends.

*There are some theological debates about animals and whether or not they have souls. I am no theologian. I am a mom who needed to offer comfort to my child. Here is an article I found regarding that question on the Focus on the Family website.

“Light it Blue”–Raising autism awareness tonight.

http://www.autismspeaks.org/

Autism speaks is raising autism awareness by asking people to put out blue lights tonight. Our blue light will be Luke Skywalker’s lightsaber… :-)

Love and hope, my friends!

Marriage MOMent

When are you not busy? Even when I’m asleep, my to-do list haunts me. As a mom, I often ask myself if my to-dos interfere with my parenting. But what about my marriage?

Since hubby currently works from home, we try to sit together for lunch. This has been nice because having an autistic child means evenings and weekends are hectic. We think of lunch as a time to reconnect. Today, though, I was in the middle of something when his work slowed enough that he could take a lunch break.

So, of course, I hopped up with a smile and sashayed to the kitchen to get lunch ready.

Ummm… Not exactly. At first I ignored him standing nearby. My insides tightened and I pursed my lips. He paced and came back, unsure of what to do about the grumpy wife vibes shooting toward him. He tried for a nice approach: “Are you hungry?”

I had been hungry an hour earlier. Now I was in the middle of my own work. Why should I have to stop? I went on in my head, silently complaining about the unfairness of the situation. After a few minutes, I realized I wasn’t even working anymore. Instead, I was having an internal grump fest.

What was wrong with me? My selfish self was rearing her ugly head, that’s what. Deep down, I knew my motivation was about trying to make myself and my needs more important than his needs.

It took me another moment to get my pride in check. FINALLY, I put my computer down. I thought about what was really important. My marriage should be my number one priority behind my commitment to God. My husband wasn’t asking me to rob a bank or rub his feet and fan his face while he worked. He wanted to spend time with me. What I was doing could wait.

Unbelievably, I sulked while we prayed over our lunch until I took another look at my heart. Selfishness has no place in marriage. Like a two-year-old, I was acting foolish simply because I didn’t get my way.

Once I got over myself, we had a really nice time. Silly me…

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