South Texas Winter

brownIn South Texas, it’s a big deal when we have our first drops in the temperature around here.  About a week ago, we experienced a fun dip in temperature, which has now left us back to 70-almost 80 degree weather.  But the drop in temperature was a big deal and so refreshing for me.  In South Texas, there is not a changing landscape to watch with each new season.  Save for a few weeks in April, when the bluebonnets cloak the highways and open fields, it remains fairly brown around here, year long.  We end a dry, brown summer and go into a dry, brown winter.  Fall does not bring reds and oranges and yellows mixed with greens, eventually fading to brown.  Winter does not a bring blanket of pure white.  That’s not to say there isn’t beauty in the browns and faded greens here.  There just doesn’t exist a lot of see-with-your-eyes changes.  While the scenery and the views don’t change, a change does come, though.  Last week, the air became crisper and cooler.  The smell of fireplaces became unavoidable when walking around the neighborhood.  Coldness was being felt in toes and noses beneath coats that didn’t seem warm enough.  This invisible, but felt change of season with a welcomed cold front in South Texas that week reminded me of the change of season in my own life.

As school started this fall and the hustle and bustle of life got going, I was at my best.  New part-time job that I am loving, working with areas in my field that are my favorite, kids coming home with smiley faces in their agendas that I signed every night, lunches and clothes prepared every evening for the next morning, and a welcomed routine after a great, structureless summer.  Slowly, things began to pop up that interrupted the routine and sense of balance that was created by my logistics team (ie: me!).  One of the biggest interruptions came when I discovered an uncomfortable lump in my breast which became very large, very sudden.  I saw my doctor and we quickly learned it was a hematoma.  Because of it’s size and the discomfort it brought, my doctor aspirated it with a needle, but within 24 hours, it was back.  Lab results revealed that the medication I take for Chronic Myeloid Leukemia was severely suppressing my white blood count and my platelets.  So, I took a break from my cancer treatment drug and my blood counts recovered.  My doctor attempted to aspirate the hematoma again, with no success.  I was then sent to a radiologist who attempted to drain it with an ultrasound to guide him.  No success.

All the while, I was on a break from my cancer treatment to take care of this hematoma.  Rather than have surgery, I opted to leave it alone.  The next decision that needed to be made was whether I restarted the drug that caused the bleeding in the first place or to switch to a new drug.  Even though the drug I have been on for four years kicked cancer’s butt, it’s kicked too many of my healthy cells to the curb, as well. So I opted to switch to a new drug that should allow me to maintain my good response I’ve achieved, and hopefully avoid the bleeding issues and suppressed counts.

In the midst of all of this, my kids began to have random health issues as well as the normal “back-to-school strep, stomach bugs, and colds.” The random health issues included things like stitches, hernia needing surgical repair, joint injections, eye-patching, unexplained low iron counts.  Throw in some issues with my girls’ behavior at school and I started wondering if we were on The Truman Show where people were watching to see when I would crack and lose my mind.

And I kinda did.  I’ll spare you the details, but we found our way to an overwhelming place of grief and isolation.  My tantrums began to show up in ridiculous moments that were not big issues. At one point, I had a huge tantrum because I was jealous of my husband’s metabolism that allows him to eat everything he wants without gaining weight.  Another high point was the time I lectured all the kids on the bus that they needed to listen to the driver because their parents were trusting him to drive their kids to school safely.  To be fair, the bus was completely chaotic and out of control.  The only thing we did right during that time was fight the isolation and share openly with our close friends and family what was going on.  Talking to God was difficult for me because I didn’t really feel like there was anything left to say.  Friends began to pray for us.  Some people at church prayed over us when we had nothing left to pray.  Through the prayer of others, a fog began to lift.  We began to look back at the month with fresh perspective.  We remembered the Seussical Musical performance with one of our kids, the rave parent-teacher conferences, the teachers who are doing their best to help our girls through their behavior challenges, the financial means to find ways to pay for a very expensive season  of medical visits, the awesome night of Trick-or-Treating, the friends who began fostering a new little baby from the NICU, the awesome way God multiplied our time to fit it all in.  These were the moments that were documented on social media.  I saved the bad moments for those closest to me.  ;)

But, here’s the thing.  Like the changing of the seasons in South Texas, the fog which began to lift wasn’t a result of a changing landscape in my life.  Nothing really changed.  The medical appointments still continued, my hematoma was/is still there, we were still preparing for a hernia repair surgery for our girl, still patching an eye after school each day, we hadn’t figured out how to help the girls with their behavior challenges at school, and we did not have anything close to a grasp on a helpful treatment for Darah’s juvenile arthritis.  What had/has changed was my ability to see beyond the circumstances to the see the beauty and blessing.  My ability to sense God in places where He had seemed so distant.  My ability to pray again.  The tantrums over stupid things and big things happened less frequently and the isolation felt less lonely.

This changing of seasons was not even through my own prayers, but through the prayers of others when I was too weak and numb to pray.  I was reminded that He is bigger than circumstances.  The South Texas summers are long and hot, dry and barren.  We often look to God to quickly change the circumstances when the heat gets too hot and the summer drought has gone on too long in our lives.  Sometimes, He does this through beautiful orange and red fall leaves and blankets of white from first snowfalls that display His majesty in visible ways.  But, sometimes, He blows His cool wind on the still-brown that allows you to feel beauty and find joy anyway.

Pointing in Communication

I think my blog is turning into a “Speech Therapy Mama” blog these days.  Ha!  This season of learning our older daughter’s augmentative alternative communication device has encouraged me to be more proactive in videotaping and documenting the progress my girls make in their development.  I also hope my blog is a place where differences can be demystified to the public.  As I raise my girls to be independent women, I want the world they enter to be one full of acceptance for their similarities and differences.

I was working with my younger daughter, Reese, who also has difficulty speaking this morning and decided to videotape where she is at with communication.  This video is significant because Reese has had to work hard to learn how to initiate requests and to learn how to point.  Neurotypical developing babies learn pointing early on and pointing is an incredibly important foundational skill to communication.  Reese’s early start in an Eastern European orphanage and her developmental delays from having Down syndrome have meant that we have had to teach her things like pointing which typically comes naturally to children.  We have also been working hard on teaching her to make choices.  For example, when we ask her “Do you want cereal or oatmeal for breakfast” in the mornings and showing her a visual of each option, she used to have a very difficult time understanding the power she had in communicating her choice by pointing.  This skill of making choices by pointing when provided visuals now comes easily for her and it opens up her world of communication significantly!  Here’s a video of her using a choice board/ Book of Words to communicate her wants.  As you can see, she also uses sign language to make her requests.  I’m a big believer in total communication, which basically means we are giving her lots of tools and avenues to communicate.  She uses speech, sign language, picture exchange, and communication boards.

Five Minutes of Speech Therapy

Here’s another five minutes of me working with Darah on her new alternative communication device.  She’s navigating it really well.  I will be continuing to post five minute videos of her progress in communication.  One very important aspect of her learning her new device is to keep structured lesson time brief, fun, and successful.  When newborn babies learning to talk, every coo and goo-goo-gah-gah is celebrated, which reinforces their speech development.  We want our daughter to receive the same celebration and reinforcement with every single button she presses.  This girl has been in speech therapy her entire life…I don’t want her to view her talk box as a speech therapy task.  I want her to view it as a connection to the world around her.  I am so proud of her.  The materials I am using are from AAC Language Lab.  They have some free materials that you can check out and a TON of free resources about the use of AAC and how to implement it.  As a parent and a Speech Pathologist who works with students with communication impairments, this site has been very valuable to me.  I also paid the $84 to subscribe for a year to receive access to even more materials.  I think it’s kind of pricey, especially after spending quite a bit of money on our daughter’s alternative communication app and ipad mini, but I appreciate the materials and how easy they are to implement with our girl while she is learning to talk with her new talk box.

Here’s what a five minute talk-box lesson looks like with my daughter with her Speech Therapy Mama (me!):

Augmentative and Alternative Communication

dbearI still don’t know the direction this mckennawho.com blog thing is going….my last post was about laundry soap.  This one is quite different.  Although, I’m a little random and ever-changing in real life, so maybe I’m just keeping it real.  ;)

My oldest daughter is 9 years old and is not verbal due to severe apraxia of speech.  She can understand speech very well and uses sign language and gestures and very creative ways to communicate.  She also learned quickly that Daddy was less likely to ever tell her “no,” so he’s her go-to person when she wants something.  However, with as creative she is, she has been very limited in communication for her entire life.  Several years ago, we were provided with a a high-tech alternative communication speech generating device.  We had off and on success with it.  She learned to navigate it incredibly well and it was a great tool for us to realize just how much she could understand,  but had difficulty using it for functional communication.  So, we backed off of the high-tech device and went back to using pictures to communicate.  We wanted to firmly establish the template for communication.  Having a huge vocabulary, but not using it functionally does not serve her very well.  So, Darah had laminated picture cards in a binder that she could build sentences with and hand to her communication partner.  I won’t get into the reasons low-tech has been better for her to establish those basic conversation skills in this post, but there are many reasons for this. 

Technology has exponentially evolved since we purchased her prior device and there have been more user-friendly, lighter-weight devices on the market.  There have also been communication apps that can be used on traditional tablets.

The problems we were having with her other device include:

  • The weight of it…my daughter has juvenile arthritis in addition to her other medical conditions and the 6+ pounds made it difficult for her to carry.
  • She just wasn’t using it. Although, this doesn’t mean she’d use another high-tech device.  However, we think the other reasons in this list contributed to her not using it.
  • Programming was very difficult.  To make AAC successful, it is important to program meaningful words as they come up.  This was incredibly difficult on her other device.
  • It sometimes worked and sometimes didn’t and didn’t hold a charge for very long.

So, we began exploring other options. As we began exploring these other options, her old device broke.  Shortly after it broke, we had a very frustrating communication breakdown.  Darah typically is ridiculously content despite her difficulty to communicate, so it was heartbreaking to see her so upset that we didn’t understand her.  This communication breakdown and broken talk box pushed my husband and I into making a quick decision on her new device.   Within about 24 hours, we had her new device ready to go for her.

We decided to try an ipad communication app.  An ipad solved the size, weight, and programming problems we had with our other device.  Our society is not intimidated by apple products and we hoped that the familiarity of the device would help her teachers and PARENTS implement her new communication in lots of ways.  We chose an app made by the makers of her old device that had a lot of vocabulary available to her.  We want our daughter to have the words available to her when she wants to use them.   This app has over 3,000 words available to her and is programmable for us to add more.  We decided to try the ipad mini because the weight and size would be smaller for her to carry and cheaper to replace if it breaks.  The icons are slightly smaller, but she isn’t having any difficulty pushing the correct buttons.  We purchased a Griffin Survivor case.  Although, I am on the lookout for a super duper case like this Griffin with a plastic screen cover that ALSO has a shoulder strap.  I would like for her to be able to carry it like a purse when she’s on the go.

The app we are using is Lamp Words for Life.  She has only had it for a short time, but is learning to navigate it with ease.   Her experience with her other device has helped this a lot.  We are working on teaching her how to locate her vocabulary as it comes up.  Her ipad goes everywhere with her.  She used it to order her food and drink at a restaurant.  She took it to Sunday School with her.  We are trying to teach her that her world is easier with her talkbox close by.  We used the ipad setting of guided access to “lock” her into this app.  In other words, this ipad is ONLY her communication device.  She can’t leave this app to surf the internet without the passcode.  We have another tablet in the house if she wants to do ipad-type activities.  I want to chronicle our adventure with alternative communication.  I want to share our success to support and encourage other parents who may be on a similar journey.  I also want to connect with other parents or Speech Pathologists who may have tips and tricks they can share with me.  In the near future, I hope to do a vlog demonstrating how her talkbox (as we call it) works.  

For now, here’s a short video clip of our daughter using it to make her first and second requests on it:

lamp-app-ipad

1. “I watch VeggieTales.”

2. “Kiss me.”

3. And here’s some video of me teaching her how to find vocabulary on her new device.  This is one of our five minute sit-downs to practice.  Our teaching times are kept short, fun, and SUCCESSFUL.  I am not pushing her with her talkbox.  We want her complete buy in right now and that means, she gets to use it on her terms in her own way.  This is why I am helping her so much in this video.  It takes Darah about 3 times to learn where a new icon is.  It takes mama about 10 times.  ;) She learns these words QUICKLY!!  I told her she could watch a movie afterward, which is why the abrubt ending.  When Darah’s done with something, she’s done. She did remember to take her talk box with her, though.  ;)

DIY – Liquid Laundry Soap

laundrysoap1

I love researching and discovering new ways to be frugal, healthier, and simpler.  A couple of years ago, I found out that making my own laundry soap was actually all three of those things.  Yes, even simpler!  It takes 10 minutes.  And, it costs about $12 per year for our family.  I purchased three ingredients at my grocery store, found a container (you can use an old store-bought laundry soap container or recycle old vinegar containers, or use a bucket).  It is not sudsy and you may need to undo the propoganda brainwashing that you have encountered that makes you think you need suds in order to be clean.  This stuff cleans better than anything else we’ve used and all of skin is happy.  Here’s the recipe for those of you who are interested. My recipe is basically one that I’ve settled on after trying many different recipes I’ve found on the blogosphere. You can find similar recipes all over the internet.

Ingredients (you’ll spend about $10-12 to get started and that may just last you a whole year, depending on how big your family is):

  • 1/2 bar of ivory soap
  • 1/2 cup Arm and Hammer Washing Soda (found in the laundry soap section of grocery store)
  • 1/2 cup Borax (also found in laundry soap section of grocery store)
  • lots of water

Directions (10 minutes once you get the hang of it):

  • Use a cheese grater or food processor to shred the ivory soap.  Pour the shreddings into a saucepan with 4-5 cups of water.  Cook on medium-high heat, stirring often, until soap melts and mixture is a creamy white color.
  • Stir in washing soda and borax and stir well.  Turn off stove top once mixed and pour entire contents into container of your choice and add 3-ish gallons of warm/hot water.
  • Let sit overnight for best results, but honestly, by the time I finally get to making my next batch of soap, it’s because we are completely out of clean undies in my house, so sitting overnight is not required.
  • Before every use, stir container.  It is normal to have some ivory soap shavings floating at the top and borax/washing soda settled on the bottom in between uses.  Put about 1/2 cup of liquid in each load.  I also pour a splash of vinegar to act as a natural fabric softener and odor absorbing agent if I have anything with strong odors, but my laundry soap alone will typically handle it just fine.

Let me know if you make your own laundry soap or if you try this recipe and what you think!  This laundry soap is NOT SUDSY, but it cleans just as great and is especially great if you have sensitive skin in your family, like we do!  (If you are concerned about whether borax is a safe product to use, check out this article.)

Flashback – His Voice

Every once in a while, I will be posting some of the things I’ve written once upon a time ago that have been special to me.  This is from January 12, 2011.  At the time, we had three children, two who came from my womb and one who came from my heart.  I had had cancer for five and a half months, which had opened my eyes even more to living intentionally and for something more than myself.  Reading this again stirs that passion I have for us all doing more and living for more than ourselves.  

————————————————————————————————————————————————————————

His Voice….

 

I was praying this evening while mopping my floors.

 

My kids were fast asleep upstairs and my house was so quiet. I scrubbed away at milk stains that have been under my table for longer than I should mention.

 

I was thanking God that I have energy again.

 

I thought of my husband and the great leader he is for our family. I thanked God that my husband has a quiet strength. He’s a river. Calm, gentle, quiet on the surface. Strong, powerful, forceful at his deepest part. I started thinking about how I am sooooo not a river. I am more like a chicken. With her head cut off.

 

I started thanking God for my three children. I came up with a new way to refer to them while mopping those floors. My oldest. My biggest. And my baby. Yeah…so perfect.

 

My baby. She would be in her final year at her baby house right now. After this year, she’d likely be transferred to an insane asylum. While debating on putting the mop away or lifting up the mats to mop under them, I remembered the documentary that revealed what kind of place the insane asylum is. I became sick to my stomach, picturing my daughter in that place rotting away. Unloved. Untouched. Unspoken for. And, if only I could be happy that my little girl’s destiny was rewritten when we said, “yes” to God’s call. I can’t be happy, because there are millions and millions of children so much like her around this world. Desperately needing their paths altered by someone saying, “yes” to God’s call. I never mopped under the mats.

 

Instead, I began pleading with God, “Where are you in this? Where are you for these children? How can you let this get to the place where the orphan problem has grown so big that it is likely unrepairable.”

 

A quiet River, more gentle and calm, more powerful and strong, than the river I call my husband, whispered…

 

“Oh, daughter. I HAVE kept this problem from getting to the place of being unrepairable. 147 million orphans in this world. That is such a small number compared to the number of people that say they love me. If only a tiny fraction of those who called me, ‘Lord,’ would offer themselves, then you would have to look far and wide to find a child who did not have a family. You see, I have kept this problem quite simple to fix.”

 

I know I sound like a broken record. I know that many people skim through this to see what the subject is about and stop reading because they’ve heard the same blog post by me over and over already. But, I’m not the river my husband is. And I’m certainly not the River my God is. I’m the chicken. With her head cut off. Desperate and urgent for the 147 million children who aren’t sleeping peacefully while their mama mops their floors.

 

These were his instructions to them: “The harvest is great, but the workers are few. So pray to the Lord who is in charge of the harvest; ask him to send more workers into his fields. ~Luke 10:2

Ten Ways to Overcome Isolation

IMG_1069Parenting small children is a sure fire way to enter a world of isolation.  Parenting children with special needs can bring on isolation of another level.  I often feel like I do not have time or energy for being very social.  I am what I’d call an “Introverted Extrovert.”  I am pretty energetic in social settings.  I love talking, visiting, meeting new people and learning about their lives.  I feel most alive when I’m being social.  However, the introverted side of me sometimes takes over and makes “being social” feel like a lot of work.  After a long, socially-rich event, I need to recover and regroup before I’m ready to leave my house again.  Between my personality and the season of parenting I am in, it’s sometimes just easier to become isolated.  I can only handle so much isolation, though before I’m moody and lonely.

There are some steps I’ve learned to take to protect my life from becoming too isolated.  I still have a long way to go with building and developing friendships, but I’ve found these action steps provide me a better sense of balance between this whole mommy thing and my need for connecting with the outside world.  If you are struggling with feeling isolated, try some of the following:

1. Say yes.

At times, my life is in pure survival mode, so saying “yes” to an invitation of any kind is not my knee jerk response.  My husband and I have made a rule that when invited to something by friends or family, we will explore the option of saying “yes” first before looking at all of our reasons for saying “I’m too busy or tired.”  By saying “yes” to invitations, we’ve had opportunities to connect with friends and meet new friends.

2. Join a book club or something similar.

Every first Friday of the month, you will find me at book club.  And every second Tuesday of every month, you will find me eating desserts with an adoption mom support group.  I absolutely love these standing appointments.  I especially love that there is a larger group of women at both and the conversations flow naturally and fluidly.  I can be as introverted or as extroverted as I want.  Joining a regular once-a-month gathering is a great, low-pressure way to decrease isolation you may be experiencing in life.  Another fun way I’ve prevented isolation in my life is by working out in group fitness classes.  I haven’t met any besties at my gym and I don’t even know any of their names, but it is nice to be in a easy environment where I can as social as I want or as quiet as I want, while seeing some familiar faces.

3. Invest first in relationships with the people you see every day.

This includes your spouse and your children.  It also includes your co-workers and neighbors.  These relationships are already existing each and every day around you.  Invest in these relationships for another level of connection.  At one time, your spouse probably satisfied everything you ever needed in a friend.  Life sometimes gets in the way of that.  Recommit to investing in that friendship and spending more quality time with your children.  Invite a neighbor you wave “hello” to every morning over for coffee.  Follow-up with your co-worker about their daughter’s illness.  These people are in your life every day and you may have a deeper friendship waiting for you with someone closer than you think.

4. Simplify your life. AKA: Declutter your house and calendar.

Make time.  Make space.  Trim the fat.  Look for ways you can simplify your life.  By simplifying your calendar, you will be able to say “yes” to more.  You will also have more energy to invest in others around you.  Declutter your home.  The less “stuff” you have in your home, the less time you need to spend maintaining your home.

5. Budget for saying “yes.”

Especially before I went back to work, it was financially difficult for us to say yes to meeting friends for lunch after church, ordering pizza with another family, or meeting a girlfriend for a girls’ night out.  So, we introduced a very important budget line  to our monthly budget.  We called it “Wild Card Cash.”  We set aside $30 each month for spontaneous social events each month.  We could all of a sudden say “yes” more often.  If $30 isn’t an option, set aside $5 a month so you can say “yes” to grabbing coffee with a girlfriend once a month.  Even on the tightest budgets, it’s important to make financial room for saying “yes.”

6. Invite people over to your house.

I really need to get better at this.  I often let my hostess-insecurity get in the way of inviting people to our home.  I am not confident in my hosting or cooking skills.  That being said, our youngest daughter is at a stage that it is sometimes difficult to hang out anywhere other than our own home.  So, if you’re a single parent, a parent whose spouse travels for work often, or raising a child who makes leaving the house kind of difficult, invite someone over to your home.

7. Set up an 8:00pm coffee date.

I have a couple of friends who are usually more than ready to spontaneously grab a coffee at 8:00pm after we’ve tucked our kids in bed.  (As a side note, this is exactly why I am a believer in early bedtimes for my children.  ;)  My husband also enjoys the occasional alone time while I’m chatting the night away with my girlfriend to focus on his own hobbies or watch movies I have zero interest in.

8. Go on regular dates with your spouse.

If you’re fortunate to have family ready to help with babysitting, take full advantage!  We have found the next best thing.  We have a babysitter who knows our kids, knows our family, and has a lot of availability, so my husband and I have been able to have date nights every 2-3 weeks.  Between all the special needs of our girls, we really need babysitters who know our girls well.  I am so thankful we have someone we can call.  Not only is date night a time to connect with eachother, it’s also a time to have someone else do the dinner and bedtime routine.  As much as I love my children, an occasional night off is welcomed.  When we can’t get away for a date night, we try to spend time together doing something other than watching tv.  Whether that’s cooking or snuggling and talking, or playing a game, it’s brings a deeper level of connection than sitting on the couch watching the next episode of whatever our current television series is.

9.  Tag-team.

This is one of those suggestions that is not necessarily ideal, but sometimes necessary.  Our girls are sick more often than the average child.  Our younger daughter has a difficult time in unfamiliar settings.  These two obstacles make it difficult to regularly attend church or life group or social events.  Things come up often and our planned events are interrupted.  Even though it’s not ideal, we have tried to tag-team and have one of us go to the event while the other one stays home.  Ideally, we’d attend family functions as a family, but rather than skip out altogether, we’ve committed to doing our best to switching off with one of us staying home and the other one going to the event.  I’m not going to lie.  It’s quite difficult to find the motivation to go to church on Sundays sometimes when the other spouse is comfy in his pajamas because he’s staying home with the contagious child.  But, when we’ve resisted that temptation to stay home, we’ve opened our connection to the outside world and to people who are important to us.

10. Get out of the house.

When all else fails, and you feel like you can’t shake the isolation, get everyone dressed and loaded in the car and go somewhere.  Go to a park, go on a hike, go walk around the mall, go anywhere.  The simple act of getting out of the house and going somewhere that is out of your normal surroundings can be very refreshing.

Isolation is a lonely place.  Raising small children and children with special needs can exacerbate those feelings of isolation.  How do you cope with isolation that sometimes comes with parenting small children?