Sign Language, Music, AAC, and Youtube

Using alternative forms of communication has become very important in our family.  In addition to speech and language delays due that often accompany Down syndrome, both of my girls have also been diagnosed with apraxia of speech, which makes speech very difficult.  They make sounds with their mouths and have a few spoken words each, but are essentially nonverbal due to their difficulty with motor planning speech sounds.  Oh, but they can understand so much.  This gap between what they are able to understand and what they are able to express can be so frustrating for them and for me.  This is where using alternative forms of communication becomes so important.

Our younger daughter is 7 and uses a few words, pointing, picture exchange to communicate primarily, and we are transitioning to a higher tech speech generating device for her. Our older daughter is 10 and uses a speech-generating device and has become quite proficient with her “talker,” but her favorite mode of communication is and has always been sign language.  Since very few people understand sign language, she is more than happy to use her “talker” when she doesn’t have the sign language vocabulary or is communicating with someone who doesn’t understand sign language.

We love using youtube for many things in the area of speech and language.  I am on it a lot to show my girls videos of other kids using “talkers” and to educate myself on ways to help my girls and the kids I provide speech and language therapy for.

However, one of the favorite ways we use youtube in our home is to watch our favorite songs in sign language.  Priorities people…it’s one of the best ways for me to find time to prepare dinner for my family.  Darah self-taught herself how to sign her favorite Frozen song by watching on repeat a woman signing it and I couldn’t be more proud of her.

Enjoy our sweet girl using her beautiful sign language….

“I wish we had a normal family…”

IMG_5538“I wish we had a normal family, sometimes” my 8 year old son told me on the way to church.  I asked him what he meant by “normal” and he elaborated that he wished his sisters could talk.  His 7 year old little sister had been screaming in his ear on the way to church, which was irritating for him and the rest of us.  He knows that her screaming is not ok and we are trying to teach her to stop screaming and yelling, but he also knows that her difficulty with speech is much of the reason she screams.  I told him that I understood that he wished his sisters could talk and I did, too.  I also told him that it was ok to sometimes wish his family was “normal” or looked like other families and sometimes I did, too.

Without dismissing his very natural feelings, we continued the conversation.  We discussed all of the wonderful things his sisters bring to our lives and we talked about how adopting Reese into our family was just as much about helping her as it was us wanting to have another daughter.  Had Darah not been born with Down syndrome, we never would have adopted Reese into our family and he told me how much he would miss his girls if they weren’t in our family.  We talked about where Reese would likely be if we wouldn’t have adopted her into our family and we agreed that our family was a better place for her than living in an orphanage without a family.  We talked about whether Reese would be able to do the things she can do since we’ve worked hard to teach her to read words, count, use soft hands when playing with her friends, to go pee pee on the potty.  I then reiterated that wishing our life was a little easier was normal, but we have to always remember that as Christians, at the end of the day, it’s not about us, but about God and bringing Him glory and about loving others.

Our family is not a traditional one in many ways.  We’ve adopted half of our children, we have more than 2.2 children, we have different ethnicity in our family, and we have two little girls who have extra needs related to their overall development, health, and their behavior.  Our conversation ended with us all agreeing that we wished our girls could talk and that we wished that things came easier for them.  We agreed that we wanted these things to make things easier for us, but mostly because we wanted the girls to not have to struggle and overcome so many obstacles.  But, we also all agreed that God has given us a pretty special family and that our family is better because of our girls and because of the struggles we’ve faced together as a family.  This is what I believe God wants from us: to bring Him our struggles, burdens, and hopes and to then look beyond our struggles and see that He remains good in all circumstances.  Whether you are 8 years old or 32 years old, it is important to remember that God is good, all the time.  And, whether you are 8 years old or 32 years old, when we live lives for the Lord, it becomes less about us and more about others.  There should be elements of “not normal” in lives lived for the Lord.  This may mean having a little sister who screams in our ears when they are 7 years old and should be able to talk or it may mean adoption or changing jobs or making big life sacrifices.  But the “not normal” elements in lives lived for the Lord more often shows up in the small parts of our lives: forgiveness when it’s not deserved, responding in love when others are being unkind, and giving our time and resources to help others in need.

What’s In My Feeding Bag?

I have the best job in the world.  I get to work in homes and child care settings, helping to develop speech, communication, language, and feeding skills in children as a Speech-Language Pathologist.  I love working in homes and child care settings, because I think there are many benefits of working in natural settings.  I work primarily with babies and children who have difficulties in the areas of feeding and swallowing.  Some of these children have very limited foods they can or will eat.  Some have had negative experiences with foods due to medical issues and are working on feeling more comfortable during meal times with a broader variety of foods.  Some of the kids I work with are unable to meet all of their nutritional and hydration needs through oral feeds and are using feeding tubes.  My experiences as a parent to two children who have had feeding tubes is what inspired me to work with families who are struggling during mealtimes.  Working in homes, means my vehicle is my office.  My vehicle is also used for my big ole’ family of six, so keeping my work stuff organized is important, or I run out of room for my four kids who have to be picked up from school in between clients and dropped off at all of their activities.  I also need an organization system that can be nicely zipped up so my own children don’t begin digging through Mommy’s work stuff.  The part about my job I don’t especially care for is unloading and loading my vehicle every evening and morning.  I also had chronic pain in my shoulders and upper back from all of the bags I carried around depending on the needs of my clients for the day.  So, I made some organizational changes and found a system that really works for me!  The first change I made was to find a rolling case for all of my feeding client stuff to make my life a little more ergonomic.

I used my 40% off coupon, like the good H0bby L0bby shopper that I am, and purchased this cleanable rolling scrapbook case from H0bby L0bby for about $50 (It was regularly priced at over $90).

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There are pockets everywhere!  I can zip everything up and anyone who has worked in home settings knows the value of zippers on bags.  Kids get very excited to explore my bags when I show up, so these zippers help keep the exploration somewhat controlled.  :)  My robot bag is where I keep reinforcement items, like fun small toys, stickers, etc…that I use with some of my kiddos who need motivation to take bites of foods.  I carry an assortment of foods in my bag and small plastic and paper cups.  My baby doll is probably the most important item in my bag for many of my clients who are unwilling to try new foods, but are more than willing to feed the baby doll new foods.  She’s small and easily cleaned and was less than $5.00. Hidden away in secret zippered areas are lollipops and licorice and goodies I use in feeding therapy for some of clients.

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This little bag, pictured below was also found in the scrapbook section of H0bby L0bby.  It was regularly $14.99 before my 40% off coupon. It holds all of my spoons, flavored tongue depressors, my z-vibe with assorted attachments, nuk brushes, jaw strengthening biting tools, syringes, loads of other oral motor tools, and straws!

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Not pictured: I keep a large shoebox size plastic container with a lid in my car for items that need to be washed after work.   As soon as I get home, to the dishwasher they go.  I also have a separate bag with different types of bottles/bottle nipples.

My blog has no rhyme or reason anymore.  It is basically a place for me to post whatever is on my mind and today it’s sharing how I organize my feeding therapy tools and equipment because I searched high and wide, looking for other home health therapists’ organization tips and came up empty handed.  I am interested in how other Speech Language Pathologists who work in home settings stay organized!  :)

One Little Word for 2015

“And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.”

1 Peter 5:10

I love love love New Years!!  It is my most favorite holiday of the year.  Reflecting on the last year and embracing a new year filled with hope and excitement of what is to come is a beautiful tradition that I love.  This is probably why I loved growing up in a military family.  We moved an average of every 2 years across the country, and while it was difficult to say goodbye to friends, I loved the excitement of embarking on a new adventure.  Loved it!  Change, bring it!  I still haven’t figured out how my husband signed up for a lifetime of marriage with me.  He is the complete opposite of me in this area.

However, one thing I continually struggle with is being completely present and content in the NOW.  I can get caught up in planning an adventure or my future, that I forsake being faithful in the less thrilling, but very important areas of my life.  I can also become so caught up in worrying about the future, that I borrow trouble that doesn’t even exist yet and may never exist.

Every year, I choose one little word I want to reflect on and focus on for the year.  This year, I have felt that I need to focus on being diligent in the little, but very important moments and tasks of the present.  I wanted a word that will remind me that running a marathon requires focusing on each step and mile. With regards to my health, I wanted a word to derail my ever present worry and fear of the “what-if’s.”  I wanted a word that reminded me of the importance of nurturing my relationships in big and small ways.  A word to help me remember the importance of consistency as I parent my sons as they grow up way too fast and parent my daughters who sometimes feel like they are growing up way too slowly.  I especially wanted a word to help me remain disciplined in fostering my relationship with my God, when life gets in the way and my faith starts to become lukewarm.  Words like endurance, faithful, and perseverance began to pop in my head before I eventually decided on my one little word for 2015:

STEADFAST

Similar words include sure, immovable, persevering, unwavering, abiding, faithful, unquestioning, tried-and-true, firm, and enduring.  I hope that I will remain STEADFAST in my walk with Him, my relationships, my health, and my priorities.  That I will not be looking so far in the future, that I miss the present.  I look forward to see all He has in store for me this new year.  His Word promises to trade steadfastness for a renewed strength, an anchor of hope, perfect completion and everything I need, lacking nothing.  That’s a pretty sweet deal, if you ask me.

Here is a list of scriptures I am holding on to as I make 2015 a STEADFAST year!

Hebrews 12: 1-2 And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. 

Proverbs 3:3 Let not steadfast love and faithfulness forsake you; bind them around your neck; write them on the tablet of your heart.

James 1:4 And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

Romans 15:4 For whatever was written in earlier times was written for our instruction, so that through perseverance and the encouragement of the Scriptures we might have hope.

1 Corinthians 15:58 Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.

James 1:12 Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.

Isaiah 40:31 But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

Psalm 51:10 Create in me a pure heart, O God, and renew a steadfast spirit within me.

Hebrews 6:19 This hope we have as an anchor of the soul, a hope both sure and steadfast and one which enters within the veil.

Matthew 25:23 “The master said, ‘Well done, my good and faithful servant. You have been faithful in handling this small amount, so now I will give you many more responsibilities. Let’s celebrate together!’

What is your one little word for 2015?

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!):