For Some of Us, Every Day is Autism Awareness Day

April 2nd is designated as Autism Awareness Day.

I decided not to post on that day. You see, for some of us, every day is Autism Awareness Day.

If you know my story, then you know a couple of years ago my husband and I became our daughter’s legal guardians. She is 20 years old, autistic, and developmentally delayed. Her vocabulary is extremely limited. To say life can be a challenge is often an understatement. Still, over the past 20 years we’ve managed as best as we can with numerous health care, and, social service providers. We lean on each other, and we’re committed to do what we can to care for our daughter.

I decided to write a few posts this month about simple, everyday happenings. Our daughter has allowed my husband and me into her world. I can’t really express what’s on her mind. I can only hope to give you a glimpse of what she experiences. We love her very deeply. As you may imagine, she’s also quite unique.

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Cathy's teapot.  She finds the dragonfly scene relaxing as she sips her daily tea.

Cathy’s teapot.  She finds the dragonfly scene relaxing as she sips her daily tea.

“My daughter has become a tea drinker,” my husband lamented incredulously.  I just laughed. Then shook his head and laughed along with me.

Deciding to drink a cup of coffee, tea, or some other beverage is an activity that most adults take for granted. You brew your own, or you pull up to a window and order some variation of a large, fully-leaded with extra something.

So, while my husband is coffee, I am tea! That said, I often make his coffee in the morning. I love to do that for him!

Our daughter doesn’t generally make those choices. Around 5 years ago she was finally able to say the word, “juice” which is a catch-all for something to drink. Perhaps at some point in the future she’ll learn more words. Language is always a work in progress.

So, what kicked off the tea drinking?

At the start of this year the three of us were trading colds and coughs. We were also dealing with severe seasonal allergies. Overall we weren’t doing very well.

Cathy's daughter begins morning tea time.

Cathy’s daughter begins morning tea time.

I grew up on the receiving end of my grandmother’s home remedies. She brewed tea and added lemon and honey to sooth the throat and help clear the sinuses.

I made some and offered it to my husband. Surprisingly, he was open to having a cup.

We decided to give the brew to our daughter. We let the hot tea cool a bit, then asked her to sit down at the table.

She touched the cup and drew her hands away. I told her it was hot, but she needed to stay sitting down so she could drink it.

The "Rudolph Cup"  has become a daily staple.  The tea is just as tasty even if it's not Christmastime!

The “Rudolph Cup”  has become a daily staple.  The tea is just as tasty even if it’s not Christmastime!

We used a ceramic Christmas cup that was given to her as a gift a few years ago. It’s red with Rudolph on one side and Santa on the other. For her, the season doesn’t matter. She could enjoy Christmas items at any time of year.

We tried to show her how to pick up the cup by the handle. She didn’t respond to that, so she rapidly tapped her fingers repeatedly against the warm cup until she was able to hold it with two hands.

Tea time can often finish with a gulp!

Tea time can often finish with a gulp!

Trying to gulp it, she swallowed then threw her head back. Then she shook her head rapidly from side to side, her hands tense. We told her to slow down and relax. She wasn’t going anywhere, and she needed to finish her tea. She tried it again. She began to sip it.

Over the next few days we continued to give her tea in the morning and the evening. It seemed to help sooth her throat and loosen all the junk in her chest.

The following week I made her other types of tea. My husband asked why I was still doing that since she was feeling better.

I noticed in the morning she’d come to the table and take a few minutes to drink it.

Often during the week tea time was followed by an appointment with a therapist so the pause was a good thing.

In the evening it was a way to wind down just before bed time.

It was now part of the routine.

My husband commented about our daughter becoming a tea drinker, because he saw me stocking the pantry. There seemed to be some flavors she was enjoying so I figured she should have her own supply.

It may not seem like much to most people, but for us, introducing a warm beverage to our daughter was one more sign of progress, one more advancement for her. Years ago this could have left all three of us exhausted and frazzled.

Not this time. Instead, we were pleasantly surprised!

Cathy's husband is coffee, and she is tea. They live very happily together!

Cathy’s husband is coffee, and she is tea. They live very happily together!

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Posted in 2016

Silent Sunday

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Posted in 2016

Optimism – From the Couch to a 5k

The weekly photo challenge is “Optimistic.”

I decided to post about a somewhat recent event that taught me how my outlook has changed over the past three years.

About nine weeks ago, I fell and twisted my foot when I walked outdoors to go talk to my husband.

At the time he was with our daughter waiting for her school bus.  My husband said it looked like I fell in slow motion off the landing step.

At first he thought I was playing. Then I told him I couldn’t stand up.

After a slip and fall at home, Cathy's right ankle is "on ice."

After a slip and fall at home, Cathy’s right ankle is “on ice.”

“What?”

“I twisted my foot. I don’t think I stand up. Just help me up and I’ll get into the house while you’re waiting for the bus.”

“No, I’ll carry you into the house. I just need to get back to Mija right away before the bus comes.”

“You don’t have to carry me into the house! I don’t want you to hurt yourself! Just help me up!”

“No, I’ll carry you.”

“Oh, yeah, that’s right! I’m a lot lighter than I used to be! Ha! Ow this hurts!”

Al scooped me off the floor and carried me to the couch while calling to our daughter not to go anywhere.

Then he ran back out to get back to our daughter. Once she was on the bus, he came back in to get ice for my foot

Over the past three years Cathy has become a dedicated gym rat. In this photo she's wearing an ankle wrap since she was recovering from her slip and fall a few weeks earlier.

Over the past three years Cathy has become a dedicated gym rat. In this photo she’s wearing an ankle wrap since she was recovering from her slip and fall a few weeks earlier.

“It took me falling on the ground for you to carry me over the threshold, huh?”

We laughed. Then I winced.

Years ago something like this could have put me into a tailspin. Missing work, other obligations…worry, worry, worry.

Not now.  That was a pleasant eye-opener for me!
If you’re familiar with my story you know that I’ve made a lot of changes over the past three years to reclaim my health.

I typically exercise around 6 hours a week. I realized with an injury that I could be suddenly sedentary.

My concern wasn’t weight gain.

My concerned was conditioning, and, about making sure that my right leg stayed mobile since it gets stiff and weak very easily.

Oh yeah, it was my right foot that was now bruised and swelling even though I knew it wasn’t broken.

The optimist in me surfaced as I told Al, “It’s just a small setback.”

“What do you mean?”

“Well, this isn’t too bad. I’ve definitely been through worse. I mean, just because I can’t be on my feet for a little bit doesn’t mean I can’t stop exercising completely, right? I can do upper body work with the hand weights.”

My husband just laughed and shook his head.

Hand made yoga socks worked well to be sure Cathy's foot had traction while it was wrapped. Slow, steady movement from yoga was a way to focus on recovery while her foot was healing.

Hand made yoga socks worked well to be sure Cathy’s foot had traction while it was wrapped. Slow, steady movement from yoga was a way to focus on recovery while her foot was healing.

Over the couple of weeks I slowly began to use my exercise bicycle to test my foot and keep my legs moving.

I also went back to the gym to do yoga then eventually core work and weights. I just made modifications so that I could keep going.

Fast forward nine weeks.

A few days ago I saw a sign as I walked out of the elevator at work . A company running club advertised their first, and hopefully annual, 5k event.

I immediately thought, “I could do that.  I can really do that!”

 

I previously made a decision that I wanted run a 5k. This was my chance to make that happen!

I logged onto the team web site and registered.

It was time to take on a new challenge! Here's the before and after shot from her first three-mile run!

It was time to take on a new challenge! Here’s the before and after shot from her first three-mile run!

Today I decided to test my legs so that I could start training for the 5k. Based on all my current activities I figured I could run most, if not all of the three-mile route that I generally walk in my neighborhood.

I kept a slow steady pace and ran the entire three miles!

About an hour later my daughter was restless so I went for another walk, this time with her.

Six miles in one day! When it was done my legs were a bit tired but I also felt very satisfied.

I look at the photo with my twisted, bruised foot and while I do see a photo of an injury, I also see a sign of perseverance and optimism.

I was able to put this injury into perspective. It slowed me down from everyday activities, but it didn’t stop me.

It confirmed that I still have more that I more to accomplish!

 

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Posted in 2016

Boundaries–Fenced In

The weekly Photo Challenge is Boundaries.

I knew immediately that the family gallery had a photo that was perfect for this challenge.

My nephew Bob had boundless energy.  He was always on the move, or so it seemed.

My dad managed to catch him at a moment where he had to take a pause.

The photo was originally in color, but I enjoy the black and white detail of the wall, then the image of the fence as it blurs away from my nephew.

What was on the other side of the fence?

Was something out of reach?

Was he just exploring?

Who knows…

I can only imagine what was running through his mind when he was stopped by this boundary.

I’m glad my dad managed to catch this moment as I also imagine my nephew was true to form and on the run moments later.

Cathy's nephew Bob ponders the fence that stops him.

Cathy’s nephew Bob ponders the fence that stops him.

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Posted in 2015

Change – A Personal Transformation

The Weekly Photo Challenge is Change.

I’ve experienced my share since the end of 2012.

Yes, all these photos are of Cathy. The first three are taken on the same date in October 2012, then 2013, 2014, then September 2015. To see more of her story see the tab in her blog called "My Journey to Better Health."

Yes, all these photos are of Cathy. The first three are taken on the same date in October 2012, then 2013, 2014, then September 2015. To see more of her story see the tab in her blog called “My Journey to Better Health.”

Achieving change has taken a lot of work…

Cathy started her journey with an activity that she loves, namely, swimming. While challenging her, swimming also was akin to a relaxing, moving meditation.

Cathy started her journey with an activity that she loves, namely, swimming. While challenging her, swimming also was akin to a relaxing, moving meditation.

Achieving change has taken time…

The changes Cathy experienced may not have seem like much on a day to day basis but, over time, it can be seen that small changes add up to big gains!

The changes Cathy experienced may not have seem like much on a day to day basis but, over time, it can be seen that small changes add up to big gains!

…consistency…

Dig deep, and keep striving. You have to find it within yourself to keep moving forward, even when the going gets tough.

Dig deep, and keep striving. You have to find it within yourself to keep moving forward, even when the going gets tough.

…tenacity…

"When the going gets tough, think about how far you've already come." Just another comment from Cathy. :)

“When the going gets tough, think about how far you’ve already come.” Just another comment from Cathy.:)

…passion…

Discover what makes you tick, what makes your heart soar. If you know Cathy's story, you may remember she's had issues with one of her legs. At first walking was a challenge. As her strength increased, so did her love of walking. Never take everyday activities for granted!

Discover what makes you tick, what makes your heart soar. If you know Cathy’s story, you may remember she’s had issues with one of her legs. At first walking was a challenge. As her strength increased, so did her love of walking. Never take everyday activities for granted!

…continually resetting goals…

In order to continually grow and improve we need to keep challenging ourselves. Learn to do something correctly, then continue to challenge yourself to still improve day after day.

In order to continually grow and improve we need to keep challenging ourselves. Learn to do something correctly, then continue to challenge yourself to still improve day after day.

…the ability to laugh at myself…

After a hard workout Cathy let her hair loose then had a great laugh at herself. It felt refreshing to accomplish her goals for the day while not caring about how she looked! It wasn't a bad hair day - it was a great workout day!

After a hard workout Cathy let her hair loose then had a great laugh at herself. It felt refreshing to accomplish her goals for the day while not caring about how she looked! It wasn’t a bad hair day – it was a great workout day!

…the willingness to take one more challenge…

Years ago Cathy used to cycle. That ended with injuries from a car accident more than 20 years ago. It was a major accomplishment when she was able to start spin classes. Previously that was a dream. Now it's a reality!

Years ago Cathy used to cycle. That ended with injuries from a car accident more than 20 years ago. It was a major accomplishment when she was able to start spin classes. Previously that was a dream. Now it’s a reality!

…and another…

More spin class! It never gets easier as you have to constantly reset your goals. You also tell yourself that it's okay to struggle. Every day is different. Take each situation as it comes. You take one challenge at a time, every time.  Yes, it's an outlook that stretches far beyond spinning but it seems to be particularly relevant there!

More spin class! It never gets easier as you have to constantly reset your goals. You also tell yourself that it’s okay to struggle. Every day is different. Take each situation as it comes. You take one challenge at a time, every time. Yes, it’s an outlook that stretches far beyond spinning but it seems to be particularly relevant there!

…and the understanding that reaching goals is just the beginning of more changes to come!

Cathy in September 2015. Every goal that you achieve lays the groundwork for more goals and achievements to come! For Cathy this means ensuring she maintains a healthy lifestyle, and, also continuing to gain strength and endurance. She is grateful for many people who have supported her and assisted her along the way!

Cathy in September 2015. Every goal that you achieve lays the groundwork for more goals and achievements to come! For Cathy this means ensuring she maintains a healthy lifestyle, and, also continuing to gain strength and endurance. She is grateful for many people who have supported her and assisted her along the way!

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Posted in 2015

Dawn

image

In quiet…in peace…in stillness I hold you.

In laughter…in joy…I set you free.

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Posted in 2015, B4Peace

Mother’s Day 2015 – One Day Early and Nineteen Years in the Making

Yesterday was the day before Mother’s Day.  We decided to celebrate a day early by going out for breakfast.

I would imagine most of you figure that’s no big deal.  People go out to eat breakfast all the time.

Cathy's daughter.

Cathy’s daughter.

That’s true for most people, but not for my family.

As it happens, yesterday was the first time my husband, our nineteen-year old daughter and I ate in a restaurant as a family and completed a meal.

Yes, you read that correctly. It was the first time ever.

Eating out as a family is something so typical that I imagine most people take it for granted.

As the mom of a young adult with “special needs,” many of our activities are not typical.

My daughter is autistic.  She is developmentally delayed.  She is essentially non-verbal.  She is a loving person who can get rattled easily because she doesn’t process the world in the same way as most people.

Is she “special?”  Is my family “special?”

I don’t know about that.  In fact, I’d say, no, we’re not.

We’re just an ordinary family that has to face challenges every day because my daughter has a number of limitations. One thing we had never been able to do was to enjoy a meal in a restaurant.

Stressful situations can cause Cathy's daughter to exhibit strong reactions.  Over time her daughter has been learning to cope with everyday challenges.

Stressful situations can cause Cathy’s daughter to exhibit strong reactions. Over time her daughter has been learning to cope with everyday challenges.

There’s nothing special about that.

Unfamiliar situations could cause our daughter extreme stress, which in the past meant our daughter would (check all that apply):

– Cover herself with a blanket and start screaming.

– After the blanket was gone, start screaming, and begin extreme, uncontrollable rocking or spinning.

– Cry uncontrollably.

– Scratch.

– Bite.

– Throw herself on the floor.

– Refuse to eat. This is an extreme behavior with a medical and behavioral component, this is not just a kid who’d being stubborn.

– Tune out the world, i. e. zone out so that her eyes lost focus.

– Other ___________ (Just fill in the blank because some days there were surprises.)

One of her favorite activities is horseback riding.  There is a horse handler as well as two side walkers to ensure the safety of all special riders.

One of her favorite activities is horseback riding. There is a horse handler as well as two side walkers to ensure the safety of all special riders.

Needless to say, if we were in a restaurant we would barely get through ordering a meal, let alone have food served to us.

When my husband made the suggestion that we go to a restaurant for Mother’s Day I was hopeful.  I realized our daughter has made tremendous strides in the past couple of years; she’s had quite a bit of assistance to learn appropriate behavior in social situations.

More on that assistance in a bit.

My husband also knew that this was something I always wanted to do, I just wanted to enjoy a simple meal.

We looked at each other and realized with a bit of planning that we could do this!

We decided to celebrate a Mother’s Day meal on Saturday because Sunday would be too crowded.  No need to cause additional stress.  We also packed a small item that my daughter would enjoys in case she started to get restless.

On the way to the restaurant our daughter was puzzled but she remained calm.

Cathy's husband and daughter wait for breakfast.

Cathy’s husband and daughter wait for breakfast.

We arrived at the restaurant and were seated in a booth.

My husband and daughter sat across from me.  When my husband and I picked up the menus that were on the table our daughter took them away from us then laid them back on the table in their original places.  We picked them up again and told her it was alright for us to look at them.  I handed her my phone so she could look at pictures.  It redirected her for a few seconds so it took her mind off the menus.

We ordered our meals, then after the waiter walked away, I traded spots with my husband so he could snap some photos of his two girls.

She was patient, looking out the window, smiling.

Cathy's daughter looks out the window while waiting for breakfast.  This seemed to keep her attention for a time.

Cathy’s daughter looks out the window while waiting for breakfast. This seemed to keep her attention for a time.

The waiter was a bit puzzled when he saw we’d rearranged ourselves.  We asked him to just place our food on the table and we’d take care of it!  He had a friendly smile and was very accommodating.

For the most part our daughter enjoyed her breakfast.  She sipped her orange juice and made a face. We realized she didn’t like the sensation because it had pulp.  She just set it aside.  It wasn’t a crisis.  She was a little bit restless after she finished eating but she calmed down when we pulled a small bag of candy from my purse.

Here’s the thing.  My daughter doesn’t eat this candy.  She likes the color and texture of the bag. The sensation and sound of the pieces of candy moving in the little package calm her.  She discards it when the bag is crinkled to the point that the texture changes.   Such a simple thing, and yet such a lifesaver!  It was my husband’s brilliant idea to take the candy with us.

Well, earlier in this post I mentioned that my daughter’s had quite a bit of help in recent times.  You see, this one simple meal could not have happened without all the people who have assisted her.

Left to right: Our daughter in church, receiving her first Communion.  Our daughter with her speech therapist.

Left to right: Our daughter in church, receiving her first Communion. Our daughter with her speech therapist.

 

Families in a similar situation to ours will understand what I’m expressing.  There is a small army of people behind the scenes who have supported us at various times.   They have worked with my daughter and with our family so that my daughter could be part of everyday society.  This is not an exaggeration.  It’s a fact.

Left to right:  Our daughter with her ABA therapist.  The instructor for our daughter's Special Needs Faith Class.

Left to right: Our daughter with her ABA therapist. The instructor for our daughter’s Special Needs Faith Class.

 

…the speech therapist …occupational therapist…applied behavior analysis (ABA) therapists… physical therapist…a variety of doctors and medical practitioners…educators…advocates…equine therapists …the recreational therapist who recently is providing a bit of respite for us while taking our daughter out into the community…countless people…

There is our hairstylist and friend who has helped us with our daughter’s grooming, and has helped our daughter to be patient, and more social.

Left to right:  Our daughter enjoys a manicure. In addition to medical and social services, we have also benefited from the services of an advocacy specialist.  Our daughter enjoys her therapeutic horseback riding.

Left to right: Our daughter enjoys a manicure. In addition to medical and social services, we have also benefited from the services of an advocacy specialist. Our daughter enjoys her therapeutic horseback riding.

There is the middle school teacher who told us that our daughter did challenge her, but also taught her to be more loving.

There are the teacher and aides in her Special Needs Sunday school class who remind us we are ALL made in God’s image; a reminder so powerful because we’ve learned that when we see our children, all our children, we see the face of God.

Cathy's best buddy and husband, Al.  There is neither time nor space to describe all that he does.

Cathy’s best buddy and husband, Al. There is neither time nor space to describe all that he does.

There is my husband, who has always called himself the butler, the chauffeur, the bodyguard, the cook, the laundry guy, the court jester.  He is our daughter’s primary advocate. He is my truest partner, my heart, my strength, and my funny bone.  We both understand that we will be our daughter’s voice, and that we will protect her with a fierceness which requires no words between us.

There was so much leading up to this quiet, peaceful moment.  Once we finished breakfast, we simply went about our day as we planned.

I couldn’t have asked for anything more.

My husband took our daughter to her riding lesson.  I went to the gym and had a great workout and training session.

We looked back on the morning and realized that this was the start of something new for us.  We were excited to think we can finally enjoy eating out as a family; and this may be an activity that may help our daughter feel safe in new settings.

Mom and daughter share a light-hearted moment at breakfast.

Mom and daughter share a light-hearted moment at breakfast.

Yes, this simple meal had an impact on me.

It left me grateful that my husband remembered my wish to share a meal.

It was nineteen years in the making.

It was a gift that left me completely content.

Just an ordinary family.

Just an ordinary family.

 

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Posted in 2015

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#yum ! Picked the first #tomato from my #new #plant #today -  #sweet #taste - glad I decided to do this! #goodfood #plants #satx #sanantonio #texas #igphoto #healthy #yummy #tasty for my #salads and for #salsa Been working a lot of 12 hour days recently so I got up for 5:30 am #bodypump .  Instructor was a no show! Rather than leave I had a #great #workout #today on my own! #madeithappen because #icoulddoit #bestrong #healthy #gettinitdone #satx #sanantonio #texas #igfit #motivation #womenwholift #womenthatlift #fitgirls #fitwomen #trainhard #happy #fitness #fitfam #fitfamsa #exercise #yum ! Spent almost the entire #weekend in the #kitchen lol.  #homemadefood #beans the first day, then added all kinds of #goodstuff to the pot! Simmered all night.  #today #finally got to #enjoy it!  #bacon #onion #garlic #jalapeño lots of #spice this #californiagirl was #cooking #texmex #food ;) #goodfood #yummy #mexicanfood #frijoles #satx #sanantonio #texas #igphoto #eat While hubby rested our #daughter had #equitherapy . Teeny, a #beautiful #belgiandraft #horse is her #fave !  I could hear her saying "Whoa" and "walk-on" - #greatjob ! 
#autism #specialneeds #autismspeaks #autismawareness #horsebackriding #horses #animals #family #lafamilia #familia #today #satx #sanantonio #texas #happy #smile #love #boerne
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