Encouraging Healthy Sibling Relationships Through Involvement within the Special Needs Community

The other day I was talking with a fellow mother of a child with Down syndrome about how we can raise our typically developing children to be loving and compassionate towards their sibling with special needs.  There seems to be a genuine concern among parents of little ones that their typically developing children will end up resenting their chromosomally enhanced sibling.  I can honestly say that in my experience growing up in the special needs community, resentment has not been the prevailing sentiment.  I think I have some understanding as to why and as to what parents can do to encourage healthy sibling relationships.

I found an article featuring insight from the incredible Dr. Brian Skotko who is not only an expert on Down syndrome, but a sibling as well.  Dr. Skotko's younger sister has Down syndrome and he has done extensive research on the sibling dynamic.  The following quote offers a valuable perspective:

Source

 

When I was reflecting on my experience growing up in the special needs community, I started thinking about other siblings that I know.  I thought about my experiences at Special Olympics track and field events.  I thought about Special Olympics bowling.  I thought about Leanne's special needs religion class.  I thought about my volunteer work at various charities that benefit individuals with special needs and I realized, to Dr. Skotko's point, that I was not alone.  I was literally submerged in the special needs community.  I saw all kinds of people with all kinds of disabilities.  I knew all kinds of families who had a chromosomally enhanced family member.  And I realized they were living the same "normal" that I was.

 The summer before we adopted Josie, I volunteered at a summer camp for kids with special needs and I was struck by how many other siblings (mostly teenagers) also volunteered.  They were paired up with different campers (not their own sibling) but I was amazed at how mature, compassionate, and capable these teenagers were!  I remember one young man whose brother has autism talking to another camper who refused to get off the bus.  He was so confident and composed and the camper truly responded to him. 

 

I saw another scenario in which a young man whose sister had significant physical and cognitive delays was paired up with a rambunctious young camper with Down syndrome.  This little guy was a handful to say the least.  There was one scenario by the lake where the camper's impulsivity could have become dangerous and his staff partner exhibited such an impressive display of unwavering authority - firmly establishing a boundary communicating to the camper that he needed to listen and cooperate - but it was wrapped in this instinctive sensitivity.  I just stood back in awe at how the obstinate little camper softened and his determination to test boundaries was immediately replaced by a desire to make his staff partner proud of his compliance.  I was so blown away by this young man's handling of the situation that I pulled him aside later and expressed my admiration.

 

You can't help but see the correlation in the aforementioned scenarios that these siblings are truly gifted with a unique sense of empathy that translated into an incredible rapport with these individuals with special needs.

 I remember a conversation I had with a mother of a young girl with Down syndrome.  She was telling me that she hired a teenager whose sister has Down syndrome as her children's' babysitter.  She said she loved this particular babysitter because she wouldn't let her daughter get away with bad behavior just because she had Down syndrome.  She didn't feel sorry for the little girl with Down syndrome nor would she allow that to be an excuse.  The babysitter would make her daughter comply, take turns, and help clean up - just like she did with the other kids.  She felt like this babysitter's insight into the sibling dynamic made her even better equipped to handle all of her children with equality and fairness.

In pasts posts about the sibling dynamic, we've explored the idea that a healthy sibling relationship doesn't come from forcing responsibility for the sibling with special needs upon the typically developing sibling.  But I think I gained a lot through the opportunities to be around other individuals with special needs.  Not only did it reiterate the idea that I was not alone, but it also helped me gain a sense of compassion for individuals who have various disabilities without being solely responsible for my sister's direct care.

 

My mom made a concerted effort to instill a sense of philanthropy and altruism in both Leanne and myself and I am forever grateful for that.  We were both expected to volunteer our talents to help with Meals on Wheels, decorating the church for Christmas, and various other charitable initiatives.  However, I think the opportunity for me to spend time helping others with special needs helped me develop a sense of compassion for my own sister and it truly lit a spark in me to want to continue to be involved in the special needs community.  During college, I worked at a developmental center for kids with special needs.  Travis and I also volunteered with a wheelchair basketball league.  We later volunteered with a Special Olympics volleyball team and have continued to remain involved with various charities that benefit the special needs population. 



I thanked my mother yesterday for facilitating this exposure to the special needs population outside of the home because I feel like it made me more comfortable within the special needs community and it instilled a true appreciation for the diversity of the human condition.  We aren't all the same; everyone has a different set of strengths and weaknesses and that's a good thing.  Because everyone - regardless of IQ or physical aptitude - has something to offer.  It's not a coincidence that having a sibling with special needs increases the likelihood that an individual will choose to pursue a career in a "helping profession" such as teaching, therapy, or social work.  It is not a coincidence that Dr. Skotko has devoted his professional career to studying Down syndrome.  And it is not a coincidence that I grew up with a sister with Down syndrome and made the decision to adopt a daughter with Down syndrome.  With a concerted effort towards positive exposure to the special needs community, I truly believe "inspiration" will prevail over "resentment" within the sibling relationship.

 

Here are a few more CCE posts focusing on the sibling dynamic:

 

Siblings: An In Depth Discussion

 

Siblings: The Impact of Special Needs on Birth Order

 

How My Parents Announced Leanne's Down Syndrome Diagnosis to Me

 

Down Syndrome:  A First-Hand Perspective

 

Addressing the Issue of Childhood Cruelty in the Special Needs Community

 

Survey Reveals First-Hand Perspective of Those Living with Down Syndrome

 

National Sibling Day 2013



Down Syndrome, Flash Cards, and the Pursuit of Literacy

The other day Merryn cleaned up the basement.  Guess what Little Mother Hen wanted as her reward: She wanted to drill Josie with flash cards.  Of course.  Because that's every 2 and a half year-old's idea of a good time, right?

So even though we were having a lazy day and I didn't really intend to do any academic activities with the girls, I granted Merryn her wish and I posted a little video of it to Instagram:

I have since fielded lots of inquiries about flash cards and literacy and what type of program we're using with Josie so I figured I'd write a quick post about it.

 

DISCLAIMER: I am not an expert.  I have a Bachelors of Business Administration.  I have no formal teaching experience.  So I am, by no means, equipped to instruct you on the proper way to educate a child, chromosomally enhanced or otherwise.  But I can certainly tell you about our experiences.

 

There was never a moment's doubt in my mind that Josie is capable of learning to read.  Why?  Because I grew up with an awesome big sister who demonstrated for me that people with Down syndrome are definitely able to attain literacy skills.  You guys have seen her blog posts and emails.   Leanne reads and writes pretty effortlessly.

 Who do we have to thank for that?  Mama Hop of course!  After Leanne was born, my mom went to graduate school and got her Masters Degree in Special Education and she used her knowledge and experience to work with Leanne.  Mama Hop believed in Leanne and she invested a lot of energy into making sure that Leanne reached her maximum potential.

 Given as how I had such good role models, I was eager to start working with Josie right away.  Without any educational background to draw from, I set my goals at the obvious preschool skills: Letters, Numbers, Shapes, Colors, Animals/Animal Sounds...I recently posted a video of Josie demonstrating these skills HERE.  I honestly don't remember when I started with Josie but it was before she turned 2 and I used basic capital alphabet letter flashcards.  At the time, Josie was G Tube fed so she would be stuck in a chair for 20-30 minutes while receiving a tube feed and I used flash cards as a way to entertain her.  I simply showed her the flash card and stated the letter and she loved it.

Buying flash cards can be overwhelming and tricky.  There are so many options but what I've found with many of them is that they are so cluttered up with different colors, words, and graphics that they almost become a distraction.  So my first piece of advice is to find something as basic as possible.  Just the letter.  No "A" plus the word "Apple" plus a picture of an "Apple" because at that point, I'm not sure the child understands what you want them to focus on.

I had a hard time finding an example online that was plain enough - Click HERE.  We also have this little traveling set from Munchkin and it's pretty good. The other alternative is to make your own and I would recommend something as simple as this:

This is a good set to purchase if you're interested in working on numbers: click HERE. 

 

I've found that both my girls really enjoy doing flash cards.  In fact, it was an incentive that we used to get Josie to eat in our early days of her G-Tube wean.  She would take a bite in order to earn the next flash card.  Beyond flash cards, we reinforced her skills with alphabet puzzles and foam bath letters and various other alphabet manipulatives.  And of course we sang the Alphabet song all the time!

 

When Josie turned 2, we enrolled her in the literacy program at GiGi's Playhouse.  GiGi's Playhouse is a Down Syndrome Achievement Center with literacy and math programs that are research-based and geared around how children with Down syndrome learn best.  The program starts with sight words because research has found that children with Down syndrome can learn phonics easier if they have already conquered 50-100 sight words.  GiGi's customizes the sight words for each child according to his/her interests.  Josie started off with a "My Family Book" that featured photos of her closest family members and she learned to recognize our names.  To watch a video of that, click HERE.

Because I love working with people with Down syndrome and because I was curious about the program, I volunteered to take the literacy training course and become a tutor at GiGi's Playhouse.  I got paired up with a teenage girl with Down syndrome and I was amazed at the progress she was able to make.  Josie made incredible progress with her tutor as well.  I have continued to introduce Josie to other sight words through the GiGi's program materials (shown in the first video in this post) and by adapting my own materials with my trusty printer and laminating machine.

 

To find out if there is a GiGi's location near you (or for information on how you can bring a GiGi's Playhouse to your area), click HERE.

 

If you do not have access to a GiGi's Playhouse but you are still interested in working on literacy skills with a child with Down syndrome, check out this book:

Teaching Reading to Children with Down Syndrome by Patricia Logan Oelwein

 

OR

See and Learn is a reading program by the Down Syndrome Education International and it also focuses on the idea that children with Down syndrome are visual learners and the materials are designed with that in mind.

 

One more note that I can't stress enough: educational toys, TV shows, and iPad apps are great but they are no substitute for one-on-one communication with a child.  We have plenty of toys that light up and sing letter songs but these are passive forms of entertainment.  Josie's skill acquisition has been learned through  interaction with a human being. Offering your child this type of attention and quality time will not only enhance their knowledge but it will enhance your relationship and bond immeasurably.

 

On one hand, I feel completely ill-equipped to offer advice on this topic as I am not an educator, but I think my amateur status communicates the idea that anyone who is invested in their child's educational success can expose his/her child to the basics.  It is my hope that in introducing these concepts to my children, they enter the school setting with more confidence.  This is particularly important with Josie, as her development and skill acquisition are slower.  It is my hope that any boost I can provide to help her feel more confident alongside her peers will make her educational experience more meaningful and rewarding.

 



Freedom from G-Tube Dependency: Part 2

I apologize for the delay in the follow-up post to "Freedom from G-Tube Dependency: Part 1".  I could give you a whole host of completely valid reasons for our blogosphere absence (two toddlers, pregnancy, consequential exhaustion, volunteer work, travel, etc...) but when it comes down to it, I feel the need to confess: I hate writing about this topic.  I hate living this topic.  And even though I have three-and-a-half years of experience with this G-Tube thing, I still feel lost and frustrated and completely void of a way to summarize our journey and wrap it up with a pretty little bow for our readers.

 

But then I remind myself of the desperation I felt when my most important goal was to get Josie off of the G-tube and what I would have given had someone shared this information with me and I feel compelled to "pay it forward," if you will.  So forgive me if I struggle to find organization and coherence. If you are a parent who is in this boat, please do not hesitate to email me with further questions.

 

So, where were we?  Oh yeah, we were in a hotel room in Iowa after we put our lives on hold for a week to take a LONG road trip to seek help for Josie's oppositional behaviors at meal time.  The plan was that Travis would work from the hotel room while keeping Merryn , and I would take Josie to the intensive feeding clinic every day for evaluation and treatment.  Because I had to pack a wide variety of foods (preferred, non-preferred, various textures and levels of exposure), we got a room with a kitchen in it and we headed to the grocery store to stock up. 

And even though taking this road trip was not anticipated nor desired, there was a silver lining: Mama Hop and Aunt Leanne were able to take a road trip of their own and meet us there.

 Travis certainly appreciated their help with Merryn, as would anyone who has every tried to sound professional on a conference call while supervising a two year-old.

 Back to feeding therapy: exactly what happens at an intensive feeding clinic?  Is Josie expected to sit and eat for 8 hours a day?  No, but it did consume most of the morning with built-in breaks.  Travis would drop us off at 8am and usually pick us up sometime around lunch.  That schedule worked out well because after such intense mornings, Josie was really for an equally intense afternoon nap.  We all were!

 Josie began the week expecting to be fed, throwing plates/cups, and spitting out her Pediasure.  She ended the week feeding herself, tolerating having plates/cups on her tray, notifying us when she was "all done" so that we could remove the plate/cup, and consistently drinking her Pediasure without incident.  So what sort of magic was worked in the meantime?  Behavioral therapy operates in a very straight-forward and sensible manner reflective of how the world works in general.  One of the key strategies is positive reinforcement.  In Josie's feeding program, in order to earn a preferred item (for some kids it's a preferred food; for Josie, it's a musical toy/singing animal), Josie must consume a non-preferred food.  How is that reflective of how the world works?  Well, in order to earn a paycheck, one must go to work, right?  In order to maintain a healthy weight, one must consume a healthy diet and exercise.  In order to catch your flight, one must show up at the airport on time.

 

So what about oppositional behaviors?  Let's take throwing the plate as an example.  If Josie throws her plate, and mom cleans it up and then feeds Josie a preferred food just to get the meal over with, what is Josie going to do the next time she's presented with a plate full of food she'd rather not eat?  You got it - she's going to toss it on the floor.  So if Josie throws her plate now, she gets out of her chair, cleans it up (this may involve hand-over-hand or verbal guidance from mom), then she gets another plate of the same food, and is required to finish it (once again, this may require hand-over-hand).   Anyone who has ever had a toddler realizes that this scenario is not going to be easy - in fact, you can expect increased opposition.  But here's the key: Consistency and follow-through.  Once the child realizes the behavior will not produce the desired outcome, it will subside.  I can testify to that with Josie's mealtime refusals.

 

Another key component of behavioral therapy (and perhaps the hardest part for me): learning to manage my response.  Any reaction - even negative - is better than no reaction in a child's eyes.  So when Josie throws a plate of food, I don't scream and yell and lecture her for 15 minutes about respectful mealtime behavior.  I certainly don't put her in time out because that achieves exactly what she wants: to get out of the meal.  I practice my best poker face and I use as few words as possible to tell her that she will clean it up and resume eating.  And the only time Josie gets attention (which is her BIGGEST motivator) is when she's cooperating and eating well.  When she takes bites of foods she'd rather not eat, we have a BIG party and she loves it.

And if I've learned anything from my experiences in behavioral therapy, it's that I have the power to prevent so much oppositional behavior simply by adjusting my approach.  What do I mean by that?  Well, on days when we're in a rush to get out the door and I'm feeling stressed and impatient and I'm barking at Josie to eat, I am met with equivalent levels of resistance from her.  However, if I approach each meal as though I am a cast member on Sesame Street; if I use my most upbeat mom voice and I make up silly songs like "It makes mama happy when you eat (clap, clap)" to the tune of "If you're happy and you know it" - I can get Josie excited to eat even the most dreaded foods.  Granted, I'm only human and I can't always bring my parenting A-game.  Likewise, Josie has good days and bad days as well.  This is why it has been so crucial for me to learn behavioral therapy methods.

 

Clearly, that is an oversimplification of a program that is run by people with PhD's and years of experience in behavioral psychology.  How does it look for Josie since her trip to the University of Iowa Children's Hospital?  Well, Josie starts her meal by taking 10 bites of the least preferred food on her plate.  For example, she would prefer not to eat a sandwich.  So I cut a sandwich up into small pieces and I put five bites on her tray.  During this time, she gets LOTS of attention and encouragement from me.  After consuming 5 bites, Josie gets a brief singing animal break.  Then she consumes the other 5.  At this point, she gets another singing animal break followed by a plate of 2-3 higher preferred foods which she consumes independently. 

 It seems so straight-forward and even though we've been successfully implementing this method for a couple of years, I still learned so much.  For example, foods we thought Josie did not like may not actually be rejected on the basis of taste.  For Josie, she may reject foods based on effort.  For example, it takes a lot of oral motor effort to chew and swallow a dry sandwich.  Likewise, for a kid with fine-motor challenges, pasta is difficult to eat because it takes some higher level utensil skills.  So take a kid who doesn't like to eat to begin with and then give them foods that challenge their oral and fine motor skills, and you can expect opposition. 

We also learned the importance of introducing new foods to Josie and maintaining variety.  When we set out on this journey, we worked with a dietitian who helped us understand the importance of the nutritional values of the foods we presented to Josie.  To help Josie achieve her daily hydration requirement, we fed her lots of water-rich foods (predominantly fruits and vegetables).  Having both heart and lung defects, Josie's cardiologist and pulmonologist stressed the importance of teaching Josie proper eating habits to help her maintain a healthy weight throughout her life for the benefit of her heart and lungs.  Once again, we focused on fruits and vegetables.  Josie's typical meal would consist of a lean meat (grilled chicken, sliced turkey, ham, etc), a fruit (apple, cantaloupe, banana, blueberries, strawberries, etc), a vegetable (cucumbers, green beans, carrots, avocado, broccoli, etc), and a slice of string cheese or Greek yogurt for calcium.  For kids that are underweight or need extra calories, those can be added in a healthier way with high-calorie, nutrient-rich foods like peanut butter, avocado, full-fat Greek Yogurt, and whole milk or Pediasure.

The benefit of feeding her this way is that she learned to eat healthy foods because she'd never been exposed to an alternative.  Imagine our surprise when we were told in feeding therapy that foods she'd rather not eat (and that we never worried about feeding her because they have little nutritional merit) were also important.  Josie had macaroni and cheese for the first time in feeding therapy and it went in the "non-preferred" category along with all other pasta.  Josie had waffles and syrup for the first time in feeding therapy.  So why would we take a child with healthy eating habits and introduce her to new foods that aren't necessarily healthy? 

Yet another light bulb moment: We don't want Josie to get into the habit of having a small handful of foods that she's willing to eat (even if they're healthy) and rejecting any other food that's presented to her just because it's unfamiliar.  We want Josie to go to school or a birthday party and eat whatever is served be it pizza or peanut butter and jelly.  This doesn't mean that we need to offer her a consistent diet of mac and cheese and chicken nuggets.  It means that we need to introduce her to new foods that she is likely to encounter throughout childhood and follow feeding protocol so that Josie realizes that even if she's unfamiliar with a food, she must still try it.  Most of the time her healthy diet is ideal.  But pancakes once a week are beneficial.  Even if Josie would rather have Greek yogurt and fruit, she needs to try new things.

So while we took the dietitian's advice and introduced and established healthy eating habits, we also learned that we need to keep introducing different foods to avoid getting in a rut. 

Whew!  I'm exhausted.  If you've made it this far in the post, God bless you.  Once again, if anyone has further questions, please do not hesitate to email me.  But for now, I'm going to wrap it up with a big thank you to the staff at the University of Iowa Children's Hospital Pediatric Psychology staff for literally changing our lives.  For those interested in learning the behavioral approach to cope with feeding problems (and/or other behavioral issues), here is a small list of resources representing the East and West coasts as well as the Midwest:

University of Iowa Children's Hospital - Iowa City, IA

Kennedy Krieger Institute - Baltimore, MD

Monroe-Meyer Institute - Omaha, NE

Seattle Children's Hospital - Seattle, WA


 For more information on how you can learn effective strategies for coping with the difficult behaviors that come with the turf in parenting, I highly recommend the following books:

First the Broccoli, Then the Ice Cream by Dr. Tim Riley

I love, love, LOVE this book!  It's not about feeding (although it could certainly help with that) This book is filled with so much common-sense advice for dealing with kids of all ages in an easy-to-read manner complete with real-life examples.  I plan to read this book again and again as my children grow because I truly feel like the advice is designed to help prepare children to be competent and successful adults.  Learn how to get your kids to respond to your directive without having to raise your voice and other extremely helpful advice for establishing a peaceful household and raising respectful little people. 

 

Help!  There's a Toddler in the House! by Thomas Reimers Ph.D.

This book is geared towards those of us that are in the trenches with defiant little people who are determined to test boundaries every minute of every day.  It's for those of us who are sick of hearing ourselves say "No!  Don't!  Stop!  Wait!  I told you not to.."  It stresses the importance of recognizing and praising positive behavior and it helps the reader understand why time out isn't always the optimal solution (see Josie's feeding example listed above) and what you can do instead.

 

The R-Word

How "retardation" went from a clinical description to a word of derision

When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “re...Open ▼When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity. (source)

Today, on behalf of Leanne and Josie, we ask that you remove the R-Word from your vocabulary.  Can you help us spread the word to end the word?

CLICK HERE for advice on how you can react when you hear someone use the R-word in order to help us eliminate this offensive language from every day speech.  Do it for Leanne.  Do it for Josie.

Freedom from G-Tube Dependency: Part 1

In the last blog post, I promised a series on the most frustrating obstacle we've encountered in parenting Josie: G-Tube Dependency.  It's a topic I've avoided addressing for a long time, and as I sit to write about it now, I am still filled with reluctance.  

Josie has had some really terrible health issues to contend with in her young life including Chronic Lung Disease.  Josie was born with unhealthy lungs and during her first year on earth, she required oxygen to breathe and would frequently go into respiratory distress which required immediate hospitalization. In August of 2010, Josie experienced her most severe respiratory distress episode and she spent several weeks in the pediatric intensive care unit on a ventilator.  You can read about that HERE and HERE.  While no one could tell us what caused this strain on Josie's lungs that nearly took her life, one of the theories was that she was aspirating on her formula.  The surgeons made a decision to insert a Gastrostomy Tube (G-Tube) directly into Josie's stomach.

The G-Tube prevented further aspiration because instead of sucking a bottle and risking the formula getting into her lungs, Josie had a little port in her abdomen where we could insert a tube, program a feeding pump, and have her nourishment delivered directly to her stomach.

One potential side effect of no longer having oral feeds is that a child can lose his or her natural instinct to eat.  This is exactly what happened to Josie after receiving her G-Tube.  This is different than having a child who is a picky eater or a child who prefers to graze.  Josie's hunger cues were destroyed.  She did not want any food or drink near her mouth.

Over time, this really began to bother me.  It was one more thing that made Josie different - really different.  Any caregiver who kept Josie had to be trained on how to use the enteral feeding pump and that was intimidating to a lot of people.  If the settings programmed into the pump got messed up, you had to be able to reprogram the pump and understand all of the nuances that made it work.  Josie had to be watched closely at all times because if she got a hold of the tubing and pulled, she could easily pull her Mic-Key button out of her abdomen.  Putting it back in would then become an urgent priority, as the hole could close up within hours requiring her to have a whole other surgery to get a new one.  And then there was just the day-to-day inconvenience of having to use medical equipment to feed your child.  You couldn't just throw a couple of chilled bottles and a jar of baby food into a thermal lunch bag and hit the town.  Awhile back, I blogged about having a picnic with the girls.  As you can see, transporting the pump, bag, tubing, and pole to the park along with two children would have been a spectacle to say the least, so we picnicked on our front porch:

  My frustrations with the G-Tube coupled with my desire for Josie to have a life as free of medical equipment as possible led me to start seeking a way to get her to start eating orally again. After several months of being fed exclusively via G-Tube, Josie received medical clearance to start feeding therapy to build her oral motor skills and stimulate her interest in oral eating.  We started feeding therapy with an Occupational Therapist and Speech and Language Pathologist who specialized in the SOS Approach.  The Sequential Oral Sensory approach focuses on increasing the child's comfort level by exploring their food in a playful manner (source).  We were encouraged to have tea parties, have all family members use Josie's cups/utensils at family meals, and allow Josie to experience messy play in her food.

When the goal is a G-Tube wean, time is of the essence because the longer a child uses a G-Tube, the harder it is to teach a child to eat orally.   At the time, I didn't realize there was more than one approach to feeding therapy or G-Tube weaning, but after using the G-Tube for a year-and-a-half and making no progress in SOS feeding therapy, I began to search for other answers.  That's when I discovered a behavioral psychologist who specialized in feeding disorders who had an impressive track record of helping children get off of the G-Tube.  After a swallow study and an endoscopy to ensure that Josie's GI system was in proper working order, we were given clearance to begin behavioral feeding therapy.

What happened next was absolutely incredible.  We became religious about using the behavioral modification techniques that we were learning in therapy,  and within a matter of 3 months, Josie was eating and drinking orally.  Three months of implementing the Applied Behavior Analysis (ABA) approach was all it took, and Josie no longer used her G-Tube for nourishment. 

Even though our commitment to the ABA method was steadfast, and even though her progress was impressive, it was hardly a Pentecostal tent revival in which a preacher laid his hands on Josie and she was freed from her G-Tube dependence.  In fact, it was simply a jump start on a journey that would prove to be anything but easy.

Four times a day, Travis or I would sit with Josie and encourage her through every single bite and sip from a straw.  Josie still did not want to eat.  We just learned how to handle her oppositional behaviors.  Once again, every single care provider had to be trained on how to implement the behavioral therapy techniques to ensure that Josie met her minimum food and hydration requirement for the day.  And when Josie got sick with a stomach bug/diarrhea, we would need to use the G-Tube to get extra fluids in her, as it was next to impossible to get her to drink more than 4oz per meal, 4 times per day.  But we still felt celebratory as she no longer depended on the G-tube for her day-to-day nourishment.

Fast forward to January 2014.  After a fun-filled week of a house packed full of relatives, gifts, and attention, suddenly everyone left - including Dad.  Travis had to take an international business trip and his absence, combined with the holiday routine disruption, left Josie upset and confused.  She acted out by not only refusing to eat, but by throwing every single plate/utensil/cup that came within arms reach of her.  We regressed back to spoon feeding Josie, bite-by-bite because setting a plate full of food on her tray was no longer an option.

These feeding issues that we thought we had conquered suddenly re-emerged with a vengeance and we had no idea what to do.  But we knew where to turn.  I contacted the behavioral psychologist who had originally helped Josie get off of her G-Tube and I begged her to get us into the intensive feeding clinic that they hosted at the University of Iowa.  I was told that the feeding clinic was booked solid through September 2014.  However, the very next day she called me back with incredible news - they had just had a cancellation for February - could we be there next week?  I immediately called Travis and asked if there was any way we could put our lives on hold and drive to Iowa with the hopes that our almost-4-year-old would spend a week in intensive therapy acquiring the skills necessary to feed herself independently.  He said "Call her back and tell her we'll be there."

To be continued...

CCE's Breakout Star

I'm pregnant with two toddlers - I'm too tired to blog!  Wah Wah!  I know it's getting old but it's the truth.  However, I assure you that I'm cooking up an extensive series about the most frustrating obstacle we've encountered in parenting Josie and the steps we have taken to overcome this obstacle.  It's taken me a long time and a lot of therapy to be able to blog about it so just bear with me.  

 In the meantime, I hope this little dose of CCE's breakout star, "Little Mother Hen," is enough to tide you over...

And "The Resolution" himself is cooking up a resolution to the biggest barrier to my ability to blog these days (Hint: It's called a "cloffice" and it should be done in early March - woo hoo!).  So, lets just hang in there, and we can soon celebrate a day that the cobwebs are dusted off of CCE and this little old blog sees new life!  

(muttered unintelligibly under my breath) As much 'new life' is left in my body after my three darling children have sucked me dry!

Huh?  Did you say something?  No, I didn't hear anything.  

See you soon! 

Happy Birthday YaYa!

Today we celebrate the birthday of a very special grandma, better known as "YaYa".  YaYa dedicated her life to raising two wonderful sons - one of whom I became so fond of I decided to marry.  Like many women who relished in the joys of motherhood, YaYa eagerly anticipated the day that she would become a grandma.  While her oldest son, Corey, made that happen pretty efficiently after he got married, Travis and I drug our feet a bit.  We were busy moving to new cities, pursuing our careers, and indulging in the freedom that a childless lifestyle affords.  One night, more than seven years into our marriage, Corey told us that his mom had claimed that she'd given up hope that Travis and I would ever decide to become parents.  Travis and I had a hard time containing our giggles as the very next day, we planned to announce our intention to adopt.  

You can imagine Travis' mom's reaction - both she and Travis' dad were moved to tears.  Little did they know that within the four years that followed, we would be giving them three additional grand babies to love!  And that's exactly what YaYa has done!  All of her granddaughters are so blessed to have this fun, vibrant, nurturing, and supportive woman as their grandma.

YaYa is celebrating a big milestone birthday today.  I promised her I wouldn't tell you which one but it doesn't matter because I assure you, you would not believe me anyway!  Without further ado, YaYa, this one's for you:

Happy Birthday, YaYa!  We love you!