Needing encouragement?

Sometimes mothering is as easy as stuffing a tiger into a pillow case. I can’t seem to keep it all together. And I often mess up.

Ever feel that way?

I do, especially when I trip over the scattered contents of my linen closet, or walk into my closet to see all my clothes pulled off the hangers by my busy younger child.

And then there are the times I butt heads with my preteen…

The other day Eldest and I had a wonderful mother-daughter date … until the drive home. Somehow, reflection on a movie shifted into an argument about laundry, which ended in me screaming, “Listen to me!”

Nice one, Mom …

I apologized, but my action shattered our fun. We arrived home in icy silence and entered the house, which looked exactly as we had left it. Cluttered countertops mocked me along with the “room of doom” upstairs where my other daughter with autism had been busy in my absence. She’d filled the room with the contents of the linen closet, paper scraps … and glue.

I wanted to hide and scream. “Why, God? When I pictured motherhood, it didn’t include scraping sticky newspaper bits and scrubbing peanut butter out of the carpet. Nor did I envision screaming like a hormonal banshee. I’m just so tired.”

Life never turns out the way we expect, does it? And moms are human, too. We make mistakes. And that’s why we need to encourage one another.

Click here to read the whole post “Mom’s Need Encouragement” at MomLife Today.

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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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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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Rachel and the bus.

by Jennifer Dyer

After Rachel took her first special ed field trip on the school bus, she was hooked. I don’t think she cared about the rest of the adventure that went along with riding the bus. She only wanted the bus.

For days after the Bus Experience, she wanted to wear the same dress and pack a sack lunch (the routine for field trips). She was hoping if she recreated the other parts of the event, the bus would come back.

This year as school started, Rachel started her bus campaign. If elections could be won by repeating the same word repeatedly, Rachel would be Grand Empress of the Universe.

“Buh,” she would say, pointing to the above picture of her on her iPad.

“Yes,” I would reply. “You want to ride the bus.”

But I didn’t want her to ride the bus! I like taking her to school. I get to see her teachers face-to-face and hold her hand as we walk in the doors. The times I’ve been too ill to take Rachel to school leave me feeling like a dried-out tree … useless and pointless.

However, I have to see things from Rachel’s point of view, don’t I? As difficult as it seems, my job as a mother is to guide my children toward independence, not hold onto them. Riding the bus for Rachel would be another step toward growing up.

It’s scary, though. She has the verbal skills of an 18 month old. I don’t want to let her out of my sight. The school assures me they have cameras and two adults on the buses and the drivers are kind to the children. Momma bear is still not convinced.

But it’s not about me. So, for Rachel, perhaps I will be brave and give her the gift of more independence.

Wow… Motherhood is not for wimps.

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