Monday, December 29, 2014

What Makes a Year Good?

The end of the year.....In some ways, I use to dread it as I took stock of everything that happened in the course of 365 days. An evaluation would then be made to determine if overall the year was a "bad year" or a "good year."

The mental checklist was something like:
-Have we had many hospital admissions, illnesses, or unexpected health issues? If yes, that's a big indicator of a bad year.
-Have we had lots of medical bills? If yes, another sign of a bad year.
-How much money is left in savings? Not much? You guessed it, blame it on a bad year.
-Was I able to stop stress eating and FINALLY get into those smaller sized clothes I've been saving for "one day?" No, still in the "temporary" fat jeans? Yikes! Another sign of a bad year!
-Were we able to take that vacation that we dreamed about taking at the beginning of the year? Occasionally, the answer has been yes and finally a point was scored in favor of a good year.
-Have we had a major crisis that was unexpected and caused a disruption to our life? Most likely, every year the answer was yes & thus, a bad year was the final result.

The year end evaluation based upon these factors mostly seemed to point to one thing. Bad, bad, bad. But, I don't feel "bad" about my life. Sure, there are days that are hard and are bad. Any day that involves the ICU, respiratory distress, surgeries, or panic at 2 am aren't necessarily ideal, but they pass. There are plenty of good, happy times too. Why does bad seem to be the main descriptor of my year then?

A couple of years ago, I started to take stock of how I was taking stock of my days and my years. I now understand my unrealistic expectations were always resulting in my year being "bad." A year without hospital admissions would be awesome, but maybe it's not attainable. If that's my goal, then I'm setting myself up disappointment. I once dreamed of a day when Jaycee would be off medications. Over the last two years, we have added more and more medications. It's unrealistic for no medicine to be a goal; it's a fantasy world. Being upset that medical bills prevented us from buying some new object of our desire, just seems trivial. And should my pant size really determine if my year was good or bad?

A good year is simply this, am I ending the year:
-loving my family well?
-loving God and following His commands?
-demonstrating God's love to people?
-in a better mental state than I started?
-with my husband and two children alive?

Yes? Forget the other stuff! It's been another successful good year!!

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Monday, December 22, 2014

A Label Change

For years, I have labeled Jaycee as "nonverbal" because she primarily does not use words to communicate. She has signed or used her communication device instead. Nonverbal seemed to best describe her. Her words, which were only a few, were rare occurrences.

But this year, Jaycee has started saying more words. She still doesn't have a large vocabulary by any means but she does say words daily now.

Her current word inventory consists of: mama, dada, bubba, bye-bye, love you, maw-maw (Grandma), papa, high, Paul, hot, up, boom, pie.

She also tries to sing along to songs making her own sounds and can even make some animal noises. This year has been her biggest vocabulary growth. Still, for an almost 9 year old, I would say her expressive language would be equivalent to that of a 15 month old. Her verbal speech is still extremely delayed. Signing and her communication device are still her primary modes of communication.

When I refer to her as "nonverbal" now, it feels inaccurate. People generally think of nonverbal as having absolutely no speech, so they act surprised when Jaycee says anything. Then they give me a puzzled look as to why I call her nonverbal. Maybe it is misleading at this point in her life...

After reading some other professional opinions on how to best describe her, I believe it's time for an official label change. From now on, I will refer to her as "minimally verbal." I think she bets fits this category. She uses speech daily now, although it is still very, very limited.

Maybe just day she can upgrade from minimally verbal too!
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Wednesday, December 17, 2014

Surprise: You're having a date!

I have many excuses for not going on a date with my husband:
-We have a very limited number of people who can babysit Jaycee.
-Jaycee requires 50 minutes of medicine and airway clearance every morning and every night.
-Jaycee sleeps with a bi-pap every night and goes to bed at 8 pm, so that makes evening dates next to impossible.
-If she is even a tiny bit sick, she is usually home bound and requires even more medicines and airway clearance.
-Jaycee is very routine oriented. If I change her evening routine, she can get extremely uncooperative.
-Gosh, I'll admit it! I like routines too. Planning a date around our schedule requires too much thought and effort.

This year, these excuses have resulted in one magical date night for our anniversary. Yes, one. Any date that includes seeing the Godzilla movie must be special! We sort of had one more date night if you count the dinner we had while we attended a Down syndrome conference. My husband said the hours of classes we took before we got to that dinner made it not count. There have been several short lunch dates at local restaurants during the week while the kids were in school. So, we do go out just not anywhere special or the slightest bit romantic.

Last week, we had date night number 2 for the year.

Some thoughtful people from our church proved they could be private detectives by secretly gathering information about us, planning a date based around our interests, and a big surprise reveal for us.

The date plans were revealed in the middle of a fake interview at our home for what we thought was a video for church. It was clever. It was surprising.

I have had many surprises the past few years, the majority of which have been bad and negative. I honestly forgot how nice a good surprise felt. The kids received several presents. We received tickets to see our favorite Christian artist, Toby Mac, a hotel room, gas money, and a restaurant gift certificate.

I couldn't believe that our family was picked to receive a blessing like this. And I couldn't believe our church, which is attended by hundreds of people, thought of us and our family. The night we received the gifts, I couldn't sleep from excitement.

A few days later, I was still excited as we made our way to the concert. It was fun and uplifting. We got hours to talk to each other without interruption or thoughts of medicines. We stayed out until 11 pm; that's rare for us! We slept in until 8:30 in the morning (also rare). We traveled with 1 suitcase and no medical equipment! I missed my kids but enjoyed the time with the man who stands by me during all of our crazy ups and downs.

It was a date night that neither one of us will forget for a long time!

Thanks Crossroads Bible Church!

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Wednesday, December 10, 2014

The Week of Sickness

What does snot, coughing, and fevers mean?

It means last week was spent nursing my child back to health. Jaycee's combination of sleep apnea, lung cyst, asthma, and heart history means that a simple cold can go straight to her lungs and result in a hospital admission. Not every cold puts her in the hospital, but every cold does cause a temporary change in our schedules.

Here's was last week entailed:
-3 nights of waking up at 2 am or 3 am because Jaycee was sick
-Approximately 32 breathing treatments
-14 nebulizer treatments of hypertonic solution, which breaks up her mucus
-Approximately 29 vest airway clearance sessions...each lasting 20 minutes
-Several doses of Tylenol and Motrin
-5 days of antibiotics
-2 trips to the doctor
-Multiple spot checks with the oxygen saturation monitor

And did I mention I tried to work a couple of days last week too?

Yes, I was tired. It's hard to keep track of all the medications. It's hard for me to relax when I fear Jaycee's breathing could change for the worse at any minute. Yes, there were times I wanted to lay in bed and recuperate myself from the mental strain of taking care of Jaycee while she's sick. It seemed like when I wanted to relax, it was time for me to do another medication. I just had to power through and keep going. It was hard at times. Moms have to sacrifice and do what's best for their kid.

So all of the work did pay off. Jaycee did start to get better without a trip to the emergency room or the hospital, which was a huge deal for the both of us.

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Wednesday, December 3, 2014

My Play List

I'm not a musical person. I can't play an instrument or read music. But, I do like to listen to music. I fill silences in the car or in my home with music.

Years ago in college, I made a decision to only listen to Christian music. I wanted to listen to music that would encourage me, talk about my values, and honor God. This music helps me when I'm struggling or when Jaycee is sick. So, today I'm sharing my play list with you. All of the artists are Christian but the music varies from hard rock to softer worship music. Check these bands out if you need a pick me up!

My "Feeling Kind of Down, Need to Pray" Playlist:
  • Good to Be Alive by Skillet
  • Sick of It by Skillet
  • Fighter by Jamie Grace
  • Oceans by Hillsong United
  • Our Father by Bethel Music
  • Closer by Bethel Music
  • Unstoppable Love by Kim Walker-Smith
  • Speak Life by Toby Mac
  • Eye on It by Toby Mac

My Playlist for when Jaycee is in the hospital:
  • Christ the Rock by Kim Walker-Smith
  • You Are Good by Bethel Music
  • Whom Shall I Fear by Chris Tomlin
  • Burning Ones by Jesus Culture
  • Revelation Song by Jesus Culture
  • Nothing Holding Me Back by Bryan & Katie Torwalt
  • Set a Fire by Jesus Culture
  • Baptize My Heart by Misty Edwards
  • The Lord Our God by Passion
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Tuesday, November 25, 2014

My Special Chores

My Special Chores.......A peek into the life of a mom caring for a child with special needs:

  • Once a week, clean Jaycee's bi-pap parts. This involves taking the hose off, disconnecting the mask, taking off the air filter, taking out the water chamber and submerging all in soapy water.
  • Clean the AFO braces once a week with soapy water.
  • Clean the inhaler aerochamber once a week. This involves soaking the chamber in soapy water for 15 minutes and air drying overnight.
  • Once a week, I clean the nebulizer mask. Periodically, I change the tubing on the nebulizer.
  • Once a month, check Jaycee's night diaper supply & reorder if necessary.
  • Once a week, check the medications to see if any need reordered. Go to the pharmacy if needed.
  • Schedule doctor's appointments and move things around at work to adjust for them.
  • Dust the house regularly to prevent allergens from building up.
  • Monthly, check the stock pile of various medical supplies like oxygen tubing and saturation monitor probes.
  • Regularly change messages or add pictures to Jaycee's communication device A.K.A the talker.
  • Every couple of months, change the filter on Jaycee's airway clearance machine.
  • At the end of the week, I plan my meals for the next week. Ever since we learned Jaycee has severe acid reflux, I do my best to only have 1 or 2 meals a week that could possibly be triggers for her reflux. I make sure I have the foods available that are good for Jaycee to eat that won't cause her reflux. This does take some planning and thinking!
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Wednesday, November 19, 2014

Awkward Moments

When you have a child with special needs, there are some unsuspecting, awkward moments that happen.  I hate when these awkward situations arise that I'm totally unprepared for. I never know how to react and are usually so stunned that I don't end up reacting at all at the time.

Imagine being me, the mom of a sweet child with Down syndrome who attends a special education program, when people make these statements:

"I heard some terrible news. The doctor thinks that Mrs. Jones is going to have a baby with Down syndrome."  

"I just found out that I'm having a baby with Down syndrome, and I'm not sure I want to keep it."

"We need to have special prayer with our church because we think we are having a baby with Down syndrome." Followed by several minutes of prayer for the unborn baby not to have Down syndrome.

"I wish my child didn't have to have an IEP. It's so sad."

"I don't want MY child is the special education room. That's for kids who are really bad off, not MY child." (I have heard this one several times!!!)

"I don't want MY child in the special education room with all those special ed kids who are mean and don't talk!"

"Can you believe she did that? She's so retarded?"

"I told him that he's doing it wrong. I told him that's the way the special kids do it."

Ok, I know people make mistakes and sometimes you say some things without thinking. But, really sometimes I can't believe what people say to me. 

Please friends, family, and professionals, think before you speak and apologize if you said something offensive.

And to my fellow moms who find themselves in these awkward situations, practice forgiveness, love, and patience. Respond in love because most people really don't know they are being offensive.

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Wednesday, November 12, 2014

Someone Loves Me

If you come here often, you know that my daughter has limited verbal speech due to childhood apraxia of speech. Like any parent, I longed to hear her say the words "I love you." Sure, she could sign it in sign language and she could push the buttons on her talker to say it too. But I wanted to hear it from her own mouth and voice.

This summer I decided I would start to work on it causally during the day whenever it seemed like an appropriate time. I understood it would take repetition and practice in order for her brain and mouth to build a pathway to remember how to say it. So I took my time breaking it into chunks for her to repeat. I also know that Jaycee shuts down if she feels pressured to speak, so I didn't sit down and "work" with her. I just practiced it in natural situations.

I always started with, "I love you, Jaycee." This was a cue to her that I was expecting a response back.

Next, I said, "Jaycee, say love (pause) you (pause) mama."

Jaycee could already say "mama," so at first all she said was mama back. That was what I expected. If she would have said love or you the first few times I would have been completely shocked. But, we kept working.

I always said my phrase cue first of "I love you, Jaycee" then led her through the other words. I praised any attempt even if all she said was mama.

Eventually, Jaycee started to make vowel noises for love. It sounded like "uh" (nothing for you) "mama." It was exciting to see progress. I never expected her to say love correctly because I have never heard her make and L or a V sound. With apraxia, it is very important to take any approximations of words and work towards improving those attempts later.

Finally, after a few months. I said, "I love you, Jaycee." To which she replied, "uh oo mama." She did it! It was amazing! It was the best she could do, and it was great! The day she said it, we practiced it naturally after a hug or a kiss to build repetition to help her remember how to say it.

After a few successful times, I showed my husband, Jason. He was impressed. He said, "Jaycee, I love you." She didn't say anything back to him as I expected. He changed the phrase cue and he was changing mama to dada. That's too many changes for someone with severe apraxia.

I taught him to say the phrase cue first. Then, he broke up "love you dada" just like I did. Because she already had a motor plan set for love you, it didn't take her long to learn this new phrase.

Now, if we say "I love you, Jaycee" she can say "uh oo mama" or "uh oo dada" back to us. She has yet to say it first as she still depends on our phrase cue but I'm sure in time she will say it to us spontaneously.

It's been a big accomplishment for her, and we are proud of what she has learned to do. If there was ever any doubt, now I know that she loves me!
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Wednesday, November 5, 2014

Private Therapy: To Do or Not To Do

One question that many parents of children with special needs often ask themselves is: Should I get extra therapy for my child outside of the school therapy program? I have asked myself this question several times over the past several years.

There are many factors to consider when thinking about obtaining therapy from a speech-language pathologist, occupational therapist, or physical therapy in private practice, at a clinic, or in a hospital setting. (Keep in mind, I'm writing this as a mom and a speech-language pathologist.)

Why are you wanting private therapy??
First, as a parent, you have to understand why you want private therapy for your child. Is it because your child has a diagnosis that warrants extra time in therapy? Do you want your child to learn something specific? Is there a problem with therapy from the school?

I have put Jaycee in private therapy at different times in the past few years for a few reasons. The first time Jaycee had private therapy was at 3 years old because she was not feeding herself. I sought out an occupational therapist with experience with Down syndrome with hope to attain the specific skill of self-feeding. I really wanted her to become independent at meals. There have been other times I've gotten Jaycee private therapy because she was recovering from an illness and not attending school. Private therapy replaced school therapy until she started school again. I have also sought out private therapy for issues that the school therapist didn't seem to understand how to address. After the evaluations, I shared the reports with the school, so they could address the problems. In other words, I used private therapy to get someone's expertise in a particular area.

It is really important to understand why you want private therapy and what you hope the outcome will be. When you answer this question, that will help you determine if private therapy will be done short term or a long term undefined amount of time. Three of my private therapy experiences have been short term (around 3 months). But, once I had Jaycee in a long term, undefined therapy situation that lasted over a year. For me, I will never do the long term thing again!

Here's some things to consider:

Pros of private therapy
-Private therapy is almost always a one-on-one session.
-Typically, sessions are 45 minutes to an hour, so private therapy may mean more time in session compared to sessions at the school.
-In private therapy, you will most likely have more of a say on what is being addressed. If there is a particular skill that is important to you, you can ask that therapy address it.
-Because you are taking your child to and from private therapy, you often have more opportunities to speak directly to the therapist, ask questions, and get feedback on how your child is doing.
-If your child has had the same therapist at the school for a number of years, private therapy allows you to get another person's professional opinion. Sometimes, change is good and finding a person with a fresh perspective may make a difference.
-You might find someone with a speciality that isn't available at the school. Sometimes, you don't always have a choice of therapist when it comes to who works with your child at the school. But that isn't the case with private therapy. You can research therapists, find out if anyone has experience with your child's condition, and possibly find someone who has been trained in approaches that interest you.

Cons of private therapy
-Private therapist does NOT always equal better. Sometimes parents think a school therapist isn't as "good" as a private therapist. The truth is that every therapist is unique with their own treatment approaches and experiences guiding them. One is not better than the other. So, don't automatically assume the private therapist is going to be a magic worker. Do your research on the therapist's experience before starting therapy! There are good and bad therapist everywhere!
-Private therapy will most likely bill your insurance or medical card, which can evoke major headaches! So, you will need to do your homework to find out what your insurance covers and if there is a cap on the number of visits a year your child can receive. For instance, some plans will allow 25 visits per year. You will need to know this information and keep track of the number of sessions so you don't go over. Don't assume the private therapist will keep accurate records of this. If your insurance has a cap on the number of visits per year, I recommend you use those visits over the summer when the school may not be providing therapy.
-Private therapy can be very expensive. If you have insurance co-pays or if your insurance doesn't cover the therapy, you may be stuck with an expensive bill. I have personally seen charges for $100-250 per session, so that can add up very quickly if you are paying for it!
-Burnout happens! You do not want to burn your child out of therapy especially if you are paying for it! If your child is going to school, receiving therapy at school, or involved in other activities, private therapy could be too much. I found that private therapy after school was totally pointless for Jaycee because she was so tired. Sometimes, the private therapy in addition to my job and home responsibilities was just too much for me, so I got burned out first.

In the end.....
there are reasons why private therapy may be a good idea. But, it is not for every child and every family. It is a difficult decision to make, especially if you are really concerned with your child's development. I personally always recommend that a child receives therapy from the school since your tax dollars are paying for it. And if you decide to add extra therapy on, I think it's important to understand why you are choosing private therapy for your child, what you hope to get out of it, and how it will affect your family. That will help you determine if the therapy is a success or not.
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Friday, October 31, 2014

31 for 21: The Big Finale

Blogging 31 days for Down syndrome Awareness Month ends today!!!!

I made it all 31 days for the 31 for 21 challenge! Thanks to all who have stopped in and read my posts. Readers from America, China, Poland, Ukraine, France, Germany, Canada, Romania, Austria, and Brazil all checked in this month. Thanks!

Typically, I post a new blog mid-week every week, so come by each week to read something new!


31 for 21 ends with Photo Friday. This photo was taken of Jaycee and I this year at a Down syndrome event at the Cardinals stadium.
This month of blogs has been dedicated to those with Down syndrome and their families. We love Jaycee dearly. We value her life. We love her through every challenge, sickness, and hard time. We love her when times are good and easy too. It's not always easy raising a child with special needs but she never asked to have these problems. It's not her fault just like it's not our fault. Jaycee and I learn together as we walk out our roles as daughter and mother. I hope you have learned something new as you read some of our stories and advice this month. 
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Thursday, October 30, 2014

31 for 21: A Parable

31 for 21 Challenge Presents Throwback Thursday: 
Today, I will be reposting one of my favorite blog posts, which was a story I wrote. Hope you enjoy reading it again!

A Parable:

A dedication to my daughter with Down syndrome

By: Evana Sandusky

Once, there was a couple who loved each other. After a few years of dating, they wed. The husband and wife both worked and saved for their optimistic future. At first, they were content with their life together. However, they were friends with other couples that had built their own homes.  These new homes were the pride and joy of their friends. Soon, that became the couple’s dream. Through hard work, it became possible for the couple to start the building process after three years of marriage.

The couple purchased land a few hundred miles away from their current residence. It was located in a quiet, small town where other new homes were being built. The couple looked carefully at their friends’ new homes and made notes to discuss with their contractor. Since their new home was being built so far from their current residence, the couple’s contractor would play a vital role in making sure things were completed properly.

The couple spent every minute working hard to save money for items needed for their new home and preparing for the move. Consequently, it was impossible for them to personally see their house in the building stages. Periodically, they received faxed pictures of their home from the contractor. The grainy, black and white pictures made the features difficult to see, but it definitely resembled a house. The couple proudly showed the pictures to friends and enthusiastically talked about their upcoming life change to anyone who would listen.

The construction of the house took nine long months. Finally, the day they had awaited came. They loaded their belongings and began the move. They arrived in their new town and made their way down their new street. Their excitement grew with each new, beautiful home they passed. Veering left at the end of the street, they pulled into their driveway at house number 321.

A large, two story home stood in front of them. But, their house was not like any other one on the block. There were noticeable differences. The window spacing seemed wider than usual. The height seemed short for a two story house. The grain of the wooden door contained an unusual line it in. Fearing bigger problems inside, they had the house thoroughly inspected, which found additional problems. The foundation of the house was not as strong as it should have been built. It would need additional beams and supports placed in order for it to maintain its integrity. These things could be added to it now, although some would be noticeable. The heat and air conditioning worked but it was not the most efficient system. The wiring of the house was also not done in a typical manner; however, it was safe and did work.

Initially, the couple felt shocked as this was not what they were expecting. But, the contractor felt he had fulfilled his obligations because the house was livable. But the couple didn’t want to settle for livable; they wanted the house to be the best it could. So, they educated themselves and found electricians, carpenters, and masons who worked with the couple to make improvements. However, some issues were not fixable, so the couple simply learned to live with them.

All of this was initially hard on the couple. They weren’t expecting to run into these problems. After all, their friends’ new homes were built without any difficulties. Their family and friends seemed sympathetic and offered friendly, but sometimes insensitive advice. Some blamed the couple for their problems. They suggested that the couple had agitated the contractor and this was their payback. The couple slowly learned to cope with the long looks towards their home and whispers behind their backs, but they always hurt a little bit.

The couple did fully embrace the house as theirs. After all, the house reflected them. The home had a large kitchen complete with two ovens for the wife’s love of baking. There was a large den for the husband’s sports collection. The floor and wall colors were just what the couple envisioned.

After spending time in their home, the couple realized they had failed to appreciate a unique feature. A circular stained glass window depicting a dove in a red heart brightly shined through the center of the living room wall. It was something so beautiful that no other house in town had. On a bright sunny day, the vibrant glow from the stained glass window reminded the couple of their happy life and future.

Life continued to move on. There were new jobs to start, groceries to buy, and chores to be done with the home. They had to adjust and that’s what they did. The couple occasionally met other people like them, often in home improvement stores. They enjoyed sharing stories and ideas in these chance encounters. They found out they were not alone, but they often felt that way in their town.

The house became something that brought the couple much comfort and peace. They enjoyed decorating their house for different holidays and inviting loved ones over to celebrate with them. But there were other circumstances that left the couple distraught. Storms with destroying tornadoes often passed by remarkably close to the house, threatening its structure. At times, the couple wondered if the house would endure the storm. In these times, the couple prayed that their house would stand and be unharmed. They rejoiced with each storm that blew through and left little or no damage. However, there was always some fear that another storm would come and take away their precious house.

In perilous times, the couple realized how much they loved and adored their house. It was different from what they originally expected. But, it was theirs. They began to focus less on what was wrong with the house and more on what was right.  Looking past the surface, it truly reflected the husband and wife. They even forgot that their house looked different to others who drove by. They fully embraced what was theirs and their way of life with the house became normal to them.

This was a house that few could fully appreciate, understand, or accept. A house with challenges yet a source of pride. A house deemed by some as a waste of time and energy. A house that some would have abandoned or condemned. A house that taught one couple about perseverance, beauty, flexibility, team work, unconditional love, and the true meaning of life.
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Wednesday, October 29, 2014

31 for 21: My 10 Commandments

31 for 21 presents Wisdom Wednesday:

The 10 Commandments for Moms Raising Children with Special needs:

1. Thou shall be patient.
2. Thou shall forgive those who insult you or your child.
3. Thou shall not be envious of other families.
4. Thou shall celebrate your child's victories and accomplishments with great joy.
5. Honor the child with the diagnosis.
6. Thou shall not be constantly overwhelmed.
7. Thou shall be willing to listen and learn from other people with experience.
8. Thou shall be flexible.
9. Thou shall eliminate extra sources of stress if at all possible.
10. Above all, thou shall love your child, your family, yourself, and God.
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Tuesday, October 28, 2014

31 for 21: Apraxia and Down syndrome

31 for 21 continues with Teaching Tuesday:

Today, I'm teaching about Down syndrome and childhood apraxia of speech (CAS). Childhood apraxia of speech is best defined here. But basically, CAS onsets in childhood and makes it difficult for the child to move their mouth to form sounds and to put those sounds into words. These children require intensive speech therapy to help them achieve complex words forms (mama versus mommy) and to be able to build phrases and sentences.

Libby Kumin's research estimates that 15% of children with Down syndrome also have a diagnosis of childhood apraxia of speech.

Here's my experience of CAS with Jaycee:

Red flags I noticed birth-3 years:
-She babbled very little as a baby. If she did babble it was something simple like "dada" with no long strings of varying consonant sounds.
-Jaycee babbled "dada" around 10 months old. I was so excited to hear this, however she didn't add anything else to this babbling.
-Jaycee was able to learn and use sign language well. By the time she was 3, she knew well over 100 signs. Yet, she couldn't say something simple like mama.
-Her first word was "bye-bye" at 29 months old.
-By the time she was 3, Jaycee identified several colors, knew several shapes, and could identify several body parts. Her receptive language was far better than her expressive language, which is a hallmark of CAS.
-Her spoken vocabulary at age 3 was: dada, papa, bye-bye.
-She had great difficulty learned to drink from a straw. It took months of practice for her to learn to put her lips around the straw and suck liquid up. She might do it once but not be able to do it again. Only through months of repetition did she finally learn how to do it.
-Jaycee had lots of feeding issues as a toddler. She gagged on many textures to the point where she vomited! This occurred daily for awhile. Jaycee was finally off of baby food by age 2. But she was a disordered eater for a long time, unable to tolerate mixed textures like spaghetti. Things like green beans or applesauce were fine but pizza was hard for her to eat and enjoy. (She is way past all these feeding issues now!!!)

By the time she was 3, I was convinced that Jaycee had CAS. The problem was she was sort of young to be diagnosed. When I mentioned it to her therapists or other therapists I knew, no one agreed with me. They told me she would be a late talker because of the things associated with Down syndrome. They told me to give it time. But, I knew a child who could sign to tell me the alphabet and could sign 15 different animal names correctly but couldn't imitate a /m/ wasn't normal for Down syndrome.

I let it go and started addressing it myself. I started to work with her at home using the Kaufman Speech Praxis Kit 1 and using exercises recommended by Talk Tools. It was painful! She barely made any progress. Jaycee basically made vowel approximates for every word leaving any consonants off, if she would even attempt the word I was targeting. Speech imitation was almost non-existent at first. I read up on CAS and Down syndrome and investigated techniques that could help her.

Finally around 4.5 years old, I requested an evaluation with a speech-language pathologist (SLP) at the closest Children's hospital. This SLP assured me that she had experience with both Down syndrome and CAS and would be able to determine if Jaycee had it. A few months later, Jaycee was tested and the diagnosis of severe CAS was given with the recommendation for intensive speech therapy following an apraxia treatment approach. Due to the severity of her CAS and good receptive language, a communication device was recommended since this SLP believed that Jaycee would struggle to learn to speak for a very long time. (She was right!)

Today, Jaycee has had her communication device for almost 4 years. It has greatly improved the quality of her life as she can talk about more topics and with more people than with just sign language. Jaycee is saying more words now, with the biggest language burst happening within the past 6 months. Speaking is still difficult for her. She tries more things but it's just hard for her. Her speech is still severely delayed. Most 2 year olds have a larger vocabulary than Jaycee. She says about 12 words now. Some words she can say now are: dada, bye-bye, papa, mama, bubba (brother), hot, hop, boom, high. Some less clear words she says are: please ("s"), you ("ew"), love ("uh"), Leah ("ah").

I hope by sharing these things about CAS, parents will learn that A. this can happen with Down syndrome and B. it is difficult to get a diagnosis so C. look for the right person who can help you.

My advice is that if a child with Down syndrome is not talking by age 5, they should be comprehensively evaluated to rule out CAS. (Of course, hearing should be evaluated first.) CAS is difficult to diagnose in any small child but especially Down syndrome. It is easy for professionals to blame the child's lack of verbal speech on a language delay, intellectual disability, or on weak oral muscles due to hypotonia associated with Down syndrome. So, a speech-language pathologist with experience diagnosing CAS is essential in order for a diagnosis to be made.
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Monday, October 27, 2014

31 for 21: Are Siblings Happy?

31 days of blogging for Trisomy 21 presents: Myth busters Monday

Myth: Siblings of those with special needs are negatively impacted. They are not happy they have a sibling with Down syndrome.

Fact:  Dr. Brian Skotko (who has a sister with Down syndrome) has researched this subject regarding siblings who have a brother or sister with Down syndrome. His research reported that for siblings age 12 and over: 94% were proud of their sibling with Down syndrome, 88% said they were better people because of their sibling, and only 4% said they would "trade in" their sibling with Down syndrome.

In general, sibling relationships are all different even when there isn't special needs involved. I think that's an important thing to keep in mind. Any brother or sister can have times when they love each other, annoy each other, and can't stand each other.

Regarding special needs and siblings, I can only speak about my personal experience with Jaycee and Elijah. Elijah loves his sister. He likes to watch television with her. He likes to help her get her vest off when her airway clearance is over. We encourage Elijah to cheer for Jaycee when she does something new; we do the same for him when he does a new skill. Elijah appreciates Jaycee. There are times when he's annoyed with her like any brother. We deal with those issues as they come up.

We respect the fact that Elijah may get mad at Jaycee or frustrated with her. We understand he may need special time with me after I've been gone with Jaycee for a hospital admission. We understand that Elijah's life is different because his sister has Down syndrome and health issues. But we don't believe he has a bad life because of her....just different. Different doesn't have to be bad; it can just be different. And that's okay.
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Sunday, October 26, 2014

31 for 21: John 9

Blogging 31 days in October for Down syndrome (Trisomy 21) awareness month continues with scripture Sunday:

As Jesus was walking along, he saw a man who had been blind from birth. "Rabbi," his disciples asked him, "why was this man born blind? Was it because of his own sins or his parents' sins?"

"It was not because of his sins or his parents' sins," Jesus answered.........
John 9:1-3

After I became Jaycee's mother, this passage of the Bible spoke different things to me. Here's some things I have learned from it:

-The disciples just knew the blindness from birth had to have happened because of sin, but Jesus said they were wrong.
-Sometimes we can erroneously judge people who have illness or disability like the disciples.
-You can be very close to God, and still draw the wrong conclusion. The disciples walked and talked with Jesus, yet they perceived something from this situation that wasn't true (blindness was due to sin). In short, sometimes a very strong Christian can get it wrong.

After I had Jaycee, I felt for the parents in this story. I wonder how they were treated by society. I wonder if other people besides the disciples viewed them as sinners. I wonder if their blind son made them some sort of outcasts in the village or among the religious. How wonderful they must have felt when Jesus came to their defense and brought them revelation as to why he was born that way.

John 9 reminds me to that families with children with disabilities need mercy, grace, love, and non-judgmental attitudes.
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Saturday, October 25, 2014

31 for 21: A Sibling Story

31 for 21 continues with Sibling Saturday:

Elijah happily goes along to support his big sister for Step up for Down syndrome walks, special
Olympics, and many doctors appointment.

This summer it was Jaycee's turn to support her brother. Elijah was old enough to join the t-ball league. We weren't sure how Jaycee would do watching Elijah at the baseball games. Would she try to run on the field? Would she even pay attention to him?

The first practice Jaycee attended was really neat. She watched with me from behind the fence. She cupped her mouths around her mouth and cheered, "Bubba bubba!" while signing baseball.

When he made a hit, she followed my cue and cheered for him. It was so nice to see her support him. It was the first time she had really been in this role as big sister. And she knew how to do it! 
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Friday, October 24, 2014

31 for 21: News Flash

31 for 21 & Photo Friday and the story behind it.

This is a picture of me and my friend, Julie, at a local news station a few weeks ago. We were on the local morning program to discuss different aspects of Down syndrome for Down syndrome Awareness Month. Julie went on as the support group leader talking about the group. I discussed parenting Jaycee and her communication device.

My first thought when they told me that I would be doing a live interview was: "What have I gotten myself in to?"

I had a week to prepare, wonder, stress, and overanalyze what was going to happen in that 3 minutes of live television. I had to go buy new clothes. I had to examine my very frizzy hair and figure out what I was going to do with that. I totally overthought the whole thing.

But, I did prepare for it. I had a message I wanted to send. First, Jaycee is like a lot of other children. Secondly, don't be afraid to have a baby with Down syndrome.

I didn't have the questions ahead of time, so I had practiced with my husband asking me questions and then telling me if I answered them good or bad.

So, I felt ready for the interview when it happened at 5:35 in the morning. It went great. I got the message out that I wanted to send. Even better, I got to introduce many people to AAC as I showed Jaycee's communication device.

Advocating for our children is important. Even if you have to do something that makes you uncomfortable, it's important to get good, positive stories out there about Down syndrome.

But, I'm in no hurry to ever do live television again!!
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Thursday, October 23, 2014

31 for 21: A Homebound Moment

31 for 21 Challenge presents Throwback Thursday:

Fall 2011: Jaycee was homebound after being in the intensive care unit two months in a row. Here she is cutting with scissors in a home school activity. Persistence pays off, she's fairly good with scissors now, but she use to put her head down and give up whenever she knew it was time to use the scissors.
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Wednesday, October 22, 2014

31 for 21: Professional Advice

31 for 21 challenge continues during Down syndrome Awareness Month with Wisdom Wednesday:

Not only am I a mom of a child with Down syndrome but I'm also a pediatric speech-language pathologist. This means I understand what it's like to be in both positions of the parent-professional relationship.

With that in mind, today I give you:

Advice for Professionals working with individuals Down syndrome:
1. First, if you don't know anything about Down syndrome, spend a few minutes reading about it. Learn some of the associated conditions like ear infections, vision issues, or sleep apnea that may impact the child's performance.

2. Be open to receive information from parents. Parents that attend conferences, go to support group meetings, and read books probably have came across something that you haven't. Be open to receive such information. You don't have to promise to implement anything. Just don't get offended if a parent tries to talk to you about something they have read. Always be willing to learn.

3. Understand that if the only time you are making contact with a parent is for bad things, then you are not going to have a good relationship with that parent. If you are only calling to complain about how the child won't do his work or to discuss an inappropriate behavior, the parent will feel you are very negative about their child. So if something positive happens, be sure to share that too. Write a note, make a call, send a text, take a picture and send it home. Parents like to hear about positive experiences!

4. Similarly, at meetings with parents, make sure you start off with something positive. Just don't talk about everything they can't do and challenges they have. Tell a story that reflects their personality, talk about something new they learned this year; just share something positive.

5. Use proper terminology. In America, we call it Down syndrome. It is not Downs or Down's. The s in syndrome is not capitalized. For more, read my post on person first language.

6. If there is a problem, do your best to describe it without labels. By that I mean, don't say, "She's just really stubborn and won't do her math work." Instead, tell exactly what happened. "When math time starts, the child refuses to get out her book. We tell her multiple times to get her book out, and she refuses to open her desk." Avoid words like stubborn or lazy. Just tell the facts and ask the parents if they have any insight into the problem or ideas that would motivate the child. For more on why I don't like the word stubborn, read my post on that.

7. If a parent is venting about their child's difficulties, please don't try to make them feel better by telling them about other children who are worse off. Just let them vent. Their feelings are probably justified. Believe me having a child with any sort of delay, changes the dynamic of the family.
     Now, if the parent asks for a reference point on how "severe" their child's delays are, then that's a different story. But, trying to cheer them up saying that their child isn't "that bad" when parents just need an understanding ear will not work.
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Tuesday, October 21, 2014

31 for 21: Teaching Baptism

Blogging 31 for 21 continues with Teaching Tuesday:

Today, I will teach you how I taught Jaycee- an 8 year old sign language using non-verbal child with Down syndrome- about baptism.

My steps:
1. I guess it goes without saying that the first step was to live out our Christian faith. We go to church every Sunday unless there is an illness or she's in isolation for a medical reason. We listen to Christian music. We pray together. We talk about God. When she's sick, we pray for her. At Christmas and Easter, we really talk about what that means. Basically, I think the first step was to set the foundation for years.

2. When baptizing became an idea, I understood that many Christians believe salvation is the precursor. So, for months off and on, I would say things to Jaycee like, "God loves you. He sent his son Jesus to die for you. Do you love God? Do you believe in Jesus?" Basically, I asked her simple questions and talked about the essential salvation points. Sometimes, she would do her grunt for yes and sometimes she would say nothing. I had these little conversations here and there for months. Jaycee cannot talk. Therefore, she cannot say a traditional prayer of salvation.

3. After some time, I talked to our pastor about baptizing Jaycee. We came up with a plan that we were all comfortable. Instead of getting baptized during a service, we would do Jaycee after the service by herself. This way Jaycee could take her time and have her family close to her. With a tentative date in mind, I worked on these next steps.

4. I wrote out a book for Jaycee that hit the major beliefs Christians have, why someone gets baptized, and what happens in a baptism. There was nothing fancy about it. But, I know Jaycee learns from repetition, and I have used books like this in the past to teach other things. It's a good strategy for her. She liked the book. We read it regularly.

5. Next, it was time to bring in youtube. There's several videos there of people getting baptized. We watched some of these. We even watched a video clip of Jesus getting baptized. Jaycee enjoyed the videos, and I explained what was happening as we watched them.
Elijah said, "Jaycee, this looks scary."  He didn't help my cause!
6. The final step was to practice in water. I wasn't too worried about this step because Jaycee loves swimming and water. But, I wanted her to practice sitting in the bathtub filled with water and leaning back. I never took her head completely under the water. I did dunk her enough to get her hair wet but I didn't want to scare her by taking her nose and mouth underwater. I didn't feel that part was important since she just had to have that part done officially once. She tolerated the bathtub practice just fine. In fact, she liked doing it. She would gesture for me to baptize her again.
So you might be wondering, how did Jaycee do after all that preparation?

Just fine!  She did it with no problems! She was a pro!
Sunday, October 19th was a day to celebrate!!
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Monday, October 20, 2014

31 for 21: Busting Non-verbal Myths

Blogging 31 days for Trisomy 21 continues with myth busters Monday:

Myth: Individuals with no verbal speech have none because no one made them talk or they don't want to talk. Individuals who can't talk don't have anything to communicate anyway.

Fact: There is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. Also, a lack of speech also does not indicate a lack of desire to communicate.

My daughter is essentially non-verbal. She says about 15 words now, so she does have a few basic words. She has difficulty with verbal speech due to childhood apraxia of speech.  Others who are non-verbal may have difficulty due to a brain injury, stroke,  profound intellectual disability, or muscle weakness in the face to name a few. In short, understand that if someone doesn't speak (other than the rare selective mutism) there is a medical or developmental reason for it. This is true for those with Down syndrome and those without.

Outsiders don't understand why my daughter doesn't speak. I have heard comments like:
-She could talk if she really wanted to.
-I guess everyone talks for her, so she doesn't have to speak.
-No one is making her talk, otherwise she would be talking.
-She has nothing to talk about or she would talk.
-If she can sign so well, she should be able to talk.

These comments are no longer hurtful to me but they frustrate me. Jaycee's lack of verbal speech is not a result of not trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. "ee" for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. While I don't ask her to say too much anymore; it is not the main reason she doesn't speak. She doesn't speak because her mouth and brain can't work together to form the sounds like I can. It's her body's fault and no one else's.

Even though Jaycee doesn't have much verbal speech, she has much to communicate about. She has hundreds of signs. Just because someone can sign, doesn't mean that they can speak. Signing involves being able to make a hand position/motion and recalling what that position/motion means. If someone has apraxia, it doesn't mean they can't learn sign. They are two different skills.

Jaycee also uses her communication device to talk about things a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this. Just because someone doesn't have the ability to speak, it doesn't mean that they have no communication.
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Sunday, October 19, 2014

31 for 21: Moving On

31 for 21 continues with Scripture Sunday:

After leaving the synagogue that day, Jesus went to Simon's home, where he found Simon's mother-in-law very sick with a high fever. "Please heal her," everyone begged. Standing at her bedside, he rebuked the fever, and it left her. And she got up at once and prepared a meal for them. 
Luke 4:38-39 NLT

The mother-in-law in this story challenges me. She was sick, healed, and immediately served Jesus and his crew.

Sometimes after Jaycee is sick in the hospital, I get stuck. Even when she's better, I'm stuck with the post traumatic stress of what she just went through. It can affect me for weeks. I deal with sadness, stress, worry, fatigue, etc.

This mother-in-law doesn't sit around wondering how she got sick in the first place. She doesn't ponder why she was sick. She doesn't sit around and worry if she'll get sick again.

She simply gets better through a miracle and continues on.

I can learn a lot from her!
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Saturday, October 18, 2014

31 for 21: Friendly Siblings

Blogging 31 days for Down syndrome continues with Sibling Saturday:

What do siblings do?

They play together.
They fight.
They have tender moments that make you say, "How sweet!"
They have moments that send one or both of them to time out.
They love each other.
They cheer for each other.
They are friends.

These are all true things about Jaycee and Elijah. For the most part, they have a regular sibling relationship. Elijah has grown up with a sister with Down syndrome but he just thinks of her as his sister. He is aware that she can't talk much and is different in that respect. He understands and verbalizes that Jaycee has Down syndrome, but it's as if it's no big deal at our house.

I feel blessed because they almost always get along. The thing that annoys Elijah the most is when Jaycee tries to kiss or hug him too much. That's usually the biggest compliant from him. He'll say, "There's no time for kissing. Stop!"

Jaycee and Elijah really care for each other. When Jaycee was in the hospital a few months ago, Jaycee would ask for "bubba" several times. Her face would glow when he came to the hospital to visit.

Likewise, Elijah misses Jaycee when she's sick. He'll ask if she's ok. When I tell him I'm taking her to the doctor, he'll ask what's wrong with sissy and if she's going to the hospital. He has concern for her.

Elijah is also Jaycee's friend. Over the past few months, I have witnessed Elijah on several different occasions introduce Jaycee to friends he met at the park or friends at school. He'll say, "This is my sister. Her name is Jaycee." I think it's sweet that he introduces her since she can't do it for herself. I never told him to do this. He started doing it on his own.

It is my hope and prayer that these two will continue to be life long friends.

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Friday, October 17, 2014

31 for 21: Photo Friday

Celebrating the lives of those with Down syndrome for 31 days in October for Down syndrome Awareness Month!
Photo Friday & the story behind it:

On Mother's Day 2014, I was thrilled to receive a beautiful purple necklace that Jason and Elijah picked out. Purple is my favorite color, so I loved it. The longer I looked at it, I realized the shape of the necklace reminded me of the cartoon princess Sophia's necklace. Jaycee had a toy version of this necklace, so she put her necklace on and we snapped this picture. Every time, I wear my necklace Jaycee loves it. Sometimes, she'll dig out her necklace and wear it when I have mine on.
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Thursday, October 16, 2014

31 for 21: A Tired Moment

Throw back Thursday and blogging 31 days for Trisomy 21:
This is Jaycee 3 years ago when she was 5.

When I see this picture, I think:
-Jaycee nap? I think I remember those days...
-That purple quilt was beautiful before Jaycee put red finger nail polish on it.
-Did she really need 3 blankets on that bed to nap?
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Wednesday, October 15, 2014

31 for 21: Wisdom for Friends

31 for 21 & Wisdom Wednesday:

Having a child with special needs requires support. It doesn't matter if the child has Down syndrome, autism, or a developmental delay, these parents need support. Even if they say they don't, they do.

It is important for close friends and families to learn how to support these families. Yes, there is a wrong way to support someone. People that are super critical or negative can provide bad support. On the flip side, someone who talks about their wonderful life and their super smart kids can be a bad source of support too.

So these are some general guidelines for friends (and families) of the parents whose child has special needs:

-If a baby is born with Down syndrome, be positive. Say congratulations. Don't cry! Cry in private if you need to, but not in front of your friend. Acknowledge that this may be difficult and different than they pictured, but they can do it.

-After some one's child is diagnosed, parents may go through a "grieving" process. This looks different for everyone but some people withdraw and avoid social situations. Please seek out these parents in this time. If they won't answer calls, then text or email. Let them know you care and you are there whenever they need you.

-Read up on the diagnosis. Ask questions if you don't understand something. Don't make assumptions. Don't say things like: "It's probably mild anyway." Down playing whatever is wrong won't help. Unless you are a doctor or a professional with a degree in this area, then you probably don't know what you are talking about.

-Talk about your life and your kids, but be sensitive to what your friend is going through. Don't go on and on about your child's fantastic sports achievements and straight A's and how they are so advanced in all that they do. You can talk about these things, but if it's all your talking about, you're probably upsetting your friend. Just mention things with some sensitivity.

-Ask if they need help. Offer to bring a meal if they are having a rough week. Offer to babysit. Offer to do anything that will help. If they don't take you up on it, offer again. Sometimes people have to learn to accept help.

-Listen to their problems. I can't stress listening enough. Sometimes these parents need to vent, talk, cry, and complain. They need someone who will simply listen. Be positive during these interactions. Give encouragement. Acknowledge that their feelings are justified.

-Don't give explanations for things the parents don't want explained. For example, early on people often tried to explain to me why I had a baby with Down syndrome. I never asked "Why did this happen to me?" in a conversation but people felt they needed to give me their explanation of "why bad things happen to good people."
I heard it all: God has to make so many people with special needs. God chose us because we were special. God did this because we sinned. I heard it from every angle!
Whatever your beliefs are on why something happened to the child, please keep them to yourself!! Unless your friend is asking for your explanation, don't give it. People's explanations confused me. It actually put up a separation between me and God in my prayer life for awhile because people gave me such awful explanations. In all your explaining, consider if what you are about to say will hurt or help their relationship with God.

-Keep your friend's child in mind while planning outings. If the child can't sit still in a restaurant, then McDonald's is a better choice than a fancier place. If the child has fears or sensitivities, please keep that in mind. If your friend can't make something you have planned due to the child's special needs, please try not to be offended. There have been many times we have had to skip an event due to Jaycee's weakened immune system or her inability to tolerate a particular situation.

Hope these help!
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Tuesday, October 14, 2014

31 for 21: The Worst Word

Blogging 31 days for Trisomy 21 continues with Teaching Tuesday:

Today you are going to learn the worst word you could ever say around anyone involved in the special needs community. Our community calls it the r-word. It is the equivalent to a curse word in our community. In case, you don't know the word, it is the word r*tard.

Full disclosure: When I was in high school and college, I used the r-word. I used it in slang just like many other teenagers. I didn't understand I was insulting people when I used that word. I thought people who got upset about the r-word were just over sensitive. Looking back, I was ignorant. I'm ashamed that I said it.

After Jaycee was born with Down syndrome and corresponding delays in cognition, my husband and I immediately stopped using the r-word. Now, it was personal. Now, it was like making fun of my daughter every time we heard someone use it in our presence. It was then that I understood why the r-word was hurtful. Her condition was nothing to use in slang for a laugh.

Many people use the r-word today. I understand that they don't get it. I don't lecture anyone about it most of the time. Ok, there was one time when some people kept repeatedly saying, "What are you r*tarded?" After some back and forth of people calling each other the r-word with Jaycee sitting right in the middle of the room, I said, "Jaycee's the r-word would you like to make fun of her too?"  They were very embarrassed but I had enough! I haven't heard those people use the r-word in front of me since though.

Just last week, I was in a daycare for work when I heard the teacher call herself the r-word because she messed up the words to a nursery song. I cringed when I thought about how many toddlers heard her use that word and will think it's appropriate to do so. Sadly, the r-word is used everywhere.

Here's what I do to combat it: I do model appropriate language. I don't laugh at a joke with the r-word. If I get a chance to speak publicly or give information like this, then I use those opportunities to teach. So please, don't use the r-word. This is especially true if you have a family member with special needs or work with children with special needs.

Not saying the r-word is respectful. Yes, people with Down syndrome deserve respect, even if they can't ask for it.

For more information, look at this site that spreads the word to end the word:

Class dismissed.
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Monday, October 13, 2014

31 for 21: Busting Another Myth

31 for 21 continues with Myth busters Monday:

Myth: Intellectual disability means that the child can't learn and will have no skills.

Fact: Individuals with an intellectual disability do learn and can develop academic skills.

Just so we are all clear, intellectual disability is the current terminology that replaced mental retardation. Intellectual disability is associated with Down syndrome. That being said, I have come across people who have argued with me that Jaycee didn't have an intellectual disability because she performed a certain task.

There was a nurse one time who said, "She's not mentally retarded. She is using sign language. She has to be smart to do that."

To which, I smiled politely and did an inward sigh. Some people don't get it! I believe that those that are not around people with intellectual disabilities assume that these individuals are non-communicative, sitting in corner somewhere not caring about anything or anyone. They assume there's no opinions, personalities, or preferences. They focus on what they can't do.

Intellectual disability is simply below average intelligence and a difficulty with skills needed for daily life. There is a range from mild to profound. These individuals learn, just at a slower rate. I'm not saying that everyone who has an intellectual disability will do algebra, but they can learn. They may learn to do sign language. They may be able to count. They may be able to read. In short, they can. What each can do will vary, but they can do something.

Jaycee has never had an IQ test, so I don't know where she falls on the severity range. She can read simple words; she started doing sight words at age 4. By age 3, she knew all her colors, a few shapes, and hundreds of signs in sign language. Today, she can count a few objects but counting to 10 confuses her. She struggles with writing; she can't write her name. And, she has difficulty understanding necessary safety rules in public (i.e. don't run off in a store or in a parking lot). She has strengths and weaknesses like any other child. But, she can learn.

Another myth busted!
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Sunday, October 12, 2014

31 for 21: Love is...

31 for 21 challenge continues with scripture Sunday:

1 Corinthians 13: 7  Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

When raising Jaycee, we have faced many hard days. There have been surgeries, tests with uncertain results, hospital admissions that were long and scary, and illnesses that seemed to drag on and on. Beyond that, there are times when skills took longer than expected to master; I would get discouraged. There are things that are just hard to deal with day after day. For example, there was a period of time when Jaycee wet the bed every night for months and then it went down to just a few times a week; I would get frustrated.
But above all these situations and those feelings was....LOVE.
The Bible is true: love never gives up through hard times, helps us to have faith, remains hopeful that things will get better, and helps us endure through every bad circumstance.

Love is the answer. It is the motivator. Love inspires me to be a better mom and to keep doing things for Jaycee. Love is the foundation of our relationship.  
No matter how I feel in the moment of a bad situation, love is the strongest emotion. In case there is any doubt...Yes, I love my child who can't say more than 20 words, who wears a diaper at night, who needs almost 2 hours of medicines a day, who needs a bi-pap machine at night, and who needs to be pushed in a stroller when we walk long distances. There is love for my child who tries her best and does what she can with the body she has.
We can face any circumstance together as a family because there is love.
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Saturday, October 11, 2014

31 for 21: A Sad Sibling

31 for 21 & Sibling Saturday:

Elijah loves his big sister with Down syndrome. Last week, Jaycee was having a rough night. She was refusing to undress and get into the shower. She ended up in time out a couple of times until she decided that she would start her night routine.

Elijah observed everything that was going on with Jaycee. He said, "Mom, I'm sad that Jaycee is in time out."  Then he would say things like, "You shouldn't put Jaycee in time out mom -that's mean." And he continued, "I'm sad that Jaycee is in trouble."

Of course, I explained that she was in time out because she wasn't listening. But, it was nice to hear that Elijah is sensitive to Jaycee's emotions and situation. He clearly loves her and wants to see her happy. That's exactly what I want their relationship to be!
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Friday, October 10, 2014

31 for 21: Mom tries to be Barney

31 for 21 continues with Photo Friday and the story behind it:

Sometimes, you love your kid so much that you do extraordinary things to show it. Sometimes, you want to cheer your kid up and do something special for them.

Jaycee came home from the hospital in September. In less than 2 months, she was in the hospital 2 times, with one of those including a week in the ICU.

So when we got home, I found myself dressed up in a terrible Barney costume to make her happy. She smiled and laughed and posed for pictures. She also said "mama" three times. Somehow she knew it was me!  It was fine. Maybe that moment as mom being Barney let her forget about all the sticks and pokes and scares she just went through.

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Thursday, October 9, 2014

31 for 21: A NICU Moment

Blogging 31 days for Trisomy 21 continues with Throwback Thursday:
This is a picture of Jaycee when she was a few days old in the NICU back in 2006. She is being held by her Grandma Ramona, who is now deceased.
Jaycee was such a small, gentle baby. Little did we know that NICU stay would be one of many hospital admissions to come in her life.
Times flies.....

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Wednesday, October 8, 2014

31 for 21: A Valued Life

31 days of blogging for Trisomy 21 continues with Wisdom Wednesday:

In this day and age when the value of someone's life is judged by their educational degree, job status, relationship status, and accomplishments, how can we as advocates answer one simple question?
How can we show that the lives of those with Down syndrome are valuable?

Judging those with Down syndrome on their IQs, ability to compete in the job market, independent skills, and other secular means seems to only highlight their areas of challenge. Sure, there are individuals with Down syndrome who do work, live independently, and go to college, but we all know that is not the case for every person.

We as advocates know that the lives of those with Down syndrome are important because we know them personally. We see their personalities, their feelings, their interests, and their opinions. We see them as human beings whose worth shouldn't be debated.

Human beings have physical needs (food, water, shelter, air), emotional needs (love, feelings of security), and even spiritual needs (for me that's a belief in God). At the core, we all need these things. In this way, we are all the same. What we do with our lives beyond these basics is different for every person. A different life with special needs doesn't mean a bad life. Different can mean different, but still considered good at the same time.

But for me, Jaycee's life is important because she has a soul (a mind, will, and emotions) that needs Jesus just like me. Every life is a life valuable to our creator and therefore should be to us too.

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Tuesday, October 7, 2014

31 for 21: Talking Down syndrome

The 31 for 21 blog challenge continues with Teaching Tuesday:

Do you understand person first language?

Let's check:

What's wrong with these sentences?
-The Down syndrome boy is so nice.
-The Downs kids are having a party.

Did you catch it? It should be obvious, but in case it wasn't...
The corrected versions are:
-The boy with Down syndrome is so nice.
-The kids with Down syndrome are having a party.

The corrected version puts the people first and the disability label second. Some people think this isn't important, but it is. It shows respect. Yes, it is important to show respect to those with Down syndrome! It shows the person is more important than the label. It shows that you see the person, first and foremost, as a person. Also, you shouldn't shorten Down syndrome to Downs.

This is how one should talk about Down syndrome and this is how one should phrase things when writing about Down syndrome.

Class dismissed.  See you tomorrow.

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Monday, October 6, 2014

31 for 21: Busting a Myth

Blogging 31 days for Down syndrome awareness month continues with Myth busters Monday:

Nearly all babies with Down syndrome are born to women over age 35.

As the mom ages, her chance of having a baby with Down syndrome does increase. From what I have read, sources have said that 50-80% of babies with Down syndrome are born to women under age 35.

Hey, I believed the myth when I was younger. I didn't realize it was possible for a young mom to have a baby with Down syndrome. Then, I gave birth to my first child, who had Down syndrome, at age 25.

I remember asking the doctor how Down syndrome could happen to my baby when I was so young. It seemed impossible or so I thought.

I didn't know what I know now. It can happen to any pregnant mom. The chances of it happening are less when you are younger, but it can still happen. There's nothing wrong with the mom. It could not have been prevented. An extra chromosome occurred and it's no one's fault.

So, yes teenage mothers, moms in their twenties, and moms in their forties can all have a baby with Down syndrome.

There.....a myth is busted!

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Sunday, October 5, 2014

31 for 21: In His Image

31 days of blogging for Down syndrome Awareness month continues today with Scripture Sunday:

Then God said, "Let us make human beings in our image, to be like us. They will reign over the fish in the sea, the birds in the sky, the livestock, all the wild animals on the earth, and the small animals that scurry along the ground." So God created human beings in his own image.
-Genesis 1:26-27 NLT

This has been a scripture I have used in prayer for Jaycee in the past year. It reminds me that Jaycee, like every other person, was made in God's image. From scripture we know, God has thoughts, speech/words, and wisdom. If Jaycee was made in God's image, isn't it possible for her to have those things too?

This scripture has brought a new way for me to pray for Jaycee in the past year, and maybe it will for you too.
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Saturday, October 4, 2014

31 for 21: A Sibling Story

31 days of blogging about Down syndrome continues with Sibling Saturday:

Elijah loves his sister with Down syndrome. This year was really exciting for Elijah because he started kindergarten at his sister's school. He was nervous about starting school but excited that he'd be riding the bus with Jaycee.

To get to school, the kids are picked up at our house. They are taken to the nearest school where they wait in a lobby area for the second bus to arrive. Then they get on the second bus which takes them directly to their school.

Jaycee and Elijah always sit in the front seat together in the first bus. But, after a few days of school, Elijah started complaining about how Jaycee wouldn't sit with him on the second bus.

He would say, "Mom, I want to sit with Jaycee on the bus, but she always sits with her friend. I want her to sit with me!!"

To which I replied, "Just ask her to sit with you right before the bus gets there."

Elijah then pleaded, "Sissy, sit by me on the bus tomorrow please."

It's great that Elijah loves his sister and wants to spend time with her. Unfortunately, Jaycee has yet to sit with him on the second bus. I hope he will have a desire to be with his sister throughout the rest of his life.
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Friday, October 3, 2014

31 for 21: Jaycee's Deer

Continuing with the 31 days of blogging for Trisomy 21 (i.e. Down syndrome), today I bring you photo Friday with a story.

These are my nieces Gabby and AJ. For a birthday party last year, they created costumes to entertain the crowd. Gabby, on the left, was a deer complete with pipe cleaner antlers. AJ was a dog. When they made their grand entrance, Jaycee missed it; she just wasn't paying attention. 
Then she got up close to Gabby and noticed the costumes. She tried to wipe off her black nose. She signed "deer" and "dog" again and again. She made noises that seemed to indicate that the costumes bothered her. But, then the costume time was over, and it seemed like Jaycee was fine.
Then, the next morning came...Jaycee signed, "deer, dog, scared" meaning that she was scared. Then she would type into her communication device, "Gabby" and sign "deer." She brought it up over and over.
When we saw grandma at church two days later, Jaycee told her how the deer and the dog scared her. She brought it up over and over again. This was really the first time that Jaycee ever recalled an event and brought it up like this. She had never initiated a conversation with someone about an event in her life. So, while I wasn't happy she was scared, I was happy that she was talking about something that happened in her life on her own. It was really a big milestone for her!
It's been almost a year and Jaycee is still talking about Gabby the deer. She has stopped talking about how she's scared. She just refers to Gabby as "deer" in sign. It's cute.

Here's cousin Gabby signing deer on Jaycee. Everyone in the family knows when Jaycee signs deer now, she can only mean one thing...Cousin Gabby! 

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Thursday, October 2, 2014

31 for 21: A Pre-school Moment


Throwback Thursday:

This picture was taken when Jaycee was 4 years old in pre-school. She loved going to school back then, and she still does now. Here, she is engaging in cooking activity with one of her teachers. She still likes to help me in the kitchen now.
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Wednesday, October 1, 2014

31 for 21 starts today!

October 1st kicks off Down syndrome awareness month. This year I'm joining with other bloggers to blog about Down syndrome everyday in the month of October to bring awareness about Down syndrome, which is called 31 for 21. (31 days of blogging about Trisomy 21)

I've decided the nature of my blog each day will follow a topic:
Scripture Sunday
Myth buster Monday
Teaching Tuesday
Wisdom Wednesday
Throwback Thursday
Photo Friday
Sibling Saturday

Today being Wednesday, we'll kick it off with one piece of wisdom I'd like to share with parents of children with Down syndrome under 1 year of age. If I could go back in time, I wish I would have just spent more time enjoying my time with Jaycee as a baby. I was so wrapped up in the medical appointments, therapy appointments, and meeting developmental milestones that looking back I feel like I didn't spend enough time just enjoying her. I always felt there was something to a developmental skill, a therapy exercise, a medicine to give, or an appointment that was coming up.

Of course, I held her and cuddled her and kissed her. But, I wish I would have done it more. I guess every parent says that, but I especially feel that way about Jaycee's time as a baby.

So my small piece of advice for new parents is to love this time with your baby. Don't be bogged down with the daily tasks and the developmental skills. Just love on your baby. Take the time to hold them and enjoy them. This time is precious. It goes quickly. There will be years of therapy and educational concerns ahead of you, so you need to pace yourself. If the therapy appointments are too much, take a week off. Do whatever it takes to give you some peace to really enjoy this time with your baby.

And with that...I'll meet you here again tomorrow!
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Wednesday, September 24, 2014

A Handicap Spot

Handicap Assistance > Accessibility > Sign
The handicap placard for vehicles: I had mixed emotions when Jaycee's came in the mail a year ago. It was a sad reality that my child was deemed "handicapped" but also glad that this would make life a little easier in some ways.
I initially asked Jaycee's doctor about getting the placard because Jaycee's lung issues really impacted our trips out.
  • If the weather is really hot or really cold, on family outings my husband would have to drop Jaycee and I off close to the entrance to help her breathing. Just a few minutes in freezing air or humid air can make her wheeze.
  • If  I go to a shopping mall or a large store, Jaycee needs to use her stroller because she can't walk long distances well.
  • In a large grocery store, I have to push Jaycee in her stroller while pulling the shopping cart behind us. It's a very tiring outing!

I didn't know if she'd be eligible for the placard that would allow us to park closer to buildings but based upon her many lung issues and her diagnosis of Down syndrome, she was eligible.

I had no idea that when I applied for the placard that I would receive it right when Jaycee was in the hospital for some serious health issues. When we received the placard, she was actually wheelchair bound and unable to walk. Talk about good timing! In time, she got her skills back, but still the placard has been beneficial when Jaycee has been sick and in the aforementioned situations.

I did feel strange when I placed that handicap placard on my rear view mirror. I felt like I was a hanging a sign that said, "My child is disabled." It felt odd for a long time. But, now I have gotten use to it. She needs the shorter walking distances. She needs this perk when it's hard for her to breathe. It may be hard for this mom to face some hard truths about Jaycee's conditions at times, but facing them and moving forward helps our whole family.

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Wednesday, September 17, 2014

Medical Expenses: My Tips for Paying Them Off

Medical bills... Those two words can make me break into a cold sweat. Prior to having Jaycee, I thought that as long as you had health insurance, you were fine. I found out that having insurance helps, but there are still deductibles, co-pays, and some things that simply aren't covered by insurance. Medications, doctor and specialists co-pays, emergency room co-pays, hotel stays related to hospital admissions, transports, it all adds up. In 8 years, I know for sure we have spent over $50,000 in medical expenses. At some point, I quit counting because it was just too depressing. So, believe me when I say that I know about medical expenses. So, here are things, I have learned over the years.

-First and foremost, know what is covered in your insurance plan! We found out early on that our insurance only pays for emergency room visits if the child was admitted to the hospital. Therefore, we try not to use the emergency room unless it truly can't wait until tomorrow. Emergency room care is expensive if you are stuck with the entire bill. Also, it's also important to find out who is in network with your insurance, since this will be significantly cheaper than out of network providers. You can usually find this information out all online now, so it makes it easier.

-Check if there is a discount. Sometimes hospitals will offer 10-20% off the bill if you pay within 30 days or less. Usually, this applies to larger balances like $500 or more. Almost always this discount offer will be marked on your bill or sometimes my bill will say "call for discount." Make the call if it says it because every dollar off counts.

-Often times, hospitals or larger home health or therapy services will provide financial assistance on what you owe. Sometimes, the hospital with advertise this information and sometimes they don't, so you have to ask.The times we have applied for financial assistance from a hospital, it has required lots of paperwork. They want to know your income, your expenses, a copy of your income tax return, how much money you have on hand, your assests, etc. It really is an overwhelming process that I think probably weeds out most people. But, by going through the long application process, it has helped us get 10-68% off of our bill.

I have learned that if your situation needs explaining, then add a letter to the financial assistance application explaining what needs to be explained in order to make your case for why you need help. If our income has changed significantly from our income tax, then I explain it. For instance, when my husband gets laid off from his job, I explain that. I list my daughter's medical conditions, and her monthly expenses in total for her medical care. If I have loyally used a hospital for years, then I tell them that too. Basically, in my letter I try to give any information that would explain why we need help and how Jaycee's medical conditions have affected our lives (i.e. missed work due to illness). I don't say anything that isn't true. I don't fudge the numbers. I simply present our case. Sometimes, we barely get anything knocked off our bill but sometimes it has really paid off!

-Ask for a payment plan when all else fails. If you can't get a discount or anything else, most hospitals or big offices are open to letting you make payments interest free. The larger the balance, the longer places will drag out the payments. Usually, they will offer something like a payoff by 2 months. I say I can't do it, and we bargain back and forth. Basically, the first offer they give you usually isn't the only one available. I usually try to ask for longer than I need just in case something comes up since it is interest free. Like, if I feel like I could pay off something in 6 months but they will go 8 months, then I will do the 8 months. You can never give them that information though. If they know you could pay it off in 6 months, then they are not going to stretch it out for your convenience. Again, if there's a income change or situational change that explains why I need to make payments, then I do that. If I'm on a payment plan, I make the payments on time every time. Sometimes, I pay them off early and sometimes I need the full time to pay it off. I have been told that they can take your account to a collections agency if you ever miss a payment, but I do not have first hand experience with this.

-The hardest people to deal with for us have been helicopter transport companies. They have NOT gone beyond two years of payments no matter how expensive the bill is and we are talking about thousands of dollars! The first time we got a $12,000 bill for Jaycee's first helicopter transport we were depressed, astounded, and perplexed. Really? It costs that much! And, we weren't the ones who ordered the helicopter transport yet we were stuck with this bill we were totally unprepared for. We have had two transport bills. They did give a small discount towards the end just to get our account closed. The second bill was taken care of by applying for state assistance, more on that in a minute. But the helicopter companies we have dealt with are not overly helpful or friendly.

Just fyi: There are medical helicopter insurance policies you can purchase for these situations. However, these would not benefit our situation with Jaycee. So, our best plan on helicopter transports is to avoid them, which we have done by transporting her ourselves using her monitor and home oxygen.

-Apply for state assistance. Our state has medical coverage for children based upon income guidelines. Normally, we don't qualify for anything. But, I have learned that we do qualify for something called a spend down program when our medical expenses are really high in a given month. So, the last time she got a helicopter transport, I applied for medical assistance the moment I got home from the hospital in preparation for the large bill. The only way to know if you are eligible is to apply. The first time I applied for help, I had mixed feelings about it but ultimately you have to do whatever you need to do to help your family.

-When your child is in the hospital, find hotels with a hospital discount. Some hospitals will tell you about hotels that work with their families, but they don't always know all of them. I have learned to call all the hotels around the hospital to see what their rates are. There may be a $15-30 difference between them. Of course, the hotels within walking distance or those offering breakfast are other factors to consider. Or, find out if there is a Ronald McDonald House near you. The times we have been offered to use the RM House has been when a long stay is anticipated for Jaycee. Usually, the social worker has referred us to the House and a room is offered if it's available. We have only used the Ronald McDonald House once when Jaycee was born. We paid a very small amount to stay there. We had a chore to do each day like empty the dishwasher or take out the trash. It was a nice place to stay but the one we were in wasn't private. You had to share a bathroom and you could only eat in the kitchen area. It was accommodating for families and really nice, but sometimes when you are stressed and upset, you just want a private hotel room to let your feelings go and dive into some cake!

-Let people know if you are seriously in a bind. People are usually helpful if they know there is a need. If people offer help, let them help. We've had everything from gift cards, cash, snacks, and free meals given to us during or after a hospital admission. Churches, individuals, friends, and family members are all people who have given to us, almost always without us asking. Sometimes, just telling someone that you're paying $120 a night for a hotel room will spring people into action.

-Consider using a 90 day prescription medication mail service. For me, I saved some significant money by ordering Jaycee's inhalers and other oral medications at a 90 day mail order prescription service. The biggest savings have been on the inhalers. However, when I've had a problem with the company sending the medication, it's been nearly impossible to correct it because I can't walk in some where and explain it. Instead, I have gotten the run around on the phone. So, while I have saved money with this 90 day service, I can't say I'm completely satisfied with the service.

-Time purchasing of medical equipment with deductibles and co-pays. As soon as our co-pays are met, I order Jaycee's bi-pap, oxygen saturation monitor probes, and nasal cannula supplies. Before the end of the year, I will make another order before all of my co-pays start over again. Certain supplies can only be ordered so many times a year or every so many months with our insurance, so I try to keep track of it.

All in all, the only way to make medical bills go away completely is to pay them off. There is no magical poof button that makes them disappear. But making small changes and investigating some options may help you save some money.

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