My Thoughts While I Wait in a Waiting Room

Over the past ten years, I cannot count the number of hours I have spent waiting for appointments with my daughter.

Physical therapy, cardiology, well checks, ENT, audiology, pulmonary, genetics...you get it. Lots of opportunities to wait.

Most places I know what my wait time for Jaycee and I will be based on previous patterns. Pulmonary usually runs on time. The eye center requires me to pack for an hour of sitting and waiting. And God help us if we are sent to the outpatient lab!

You would think I would be great at waiting by now, and most of the time I can handle it. But a few weeks ago, I waited for over an hour with my daughter to see one of her doctors. During this long and unexpected wait, my mind began to wander.

These are things I fantasize about doing while I wait in an uncomfortable office chair for my daughter's name to be called:

-What would happen if I asked for a discount based upon my long wait? I am not at all satisfied with her care so why do I have to pay the full price for sub par treatment? What if they agreed? In a restaurant, you might get something off for poor service if you complain. Why not here? No, I doubt this idea will ever work.

-What if I told the doctor after his assessment of my child how ridiculous it is to wait and wait every time I see him? I think about telling him how rude and unprofessional it is to keep people waiting like his time is more precious than mine. I would love for him to sit with my daughter with special needs asking to go home every 5 minutes in his waiting room. Perhaps he would want my advice on how to more effectively schedule patients since his current method doesn't work. Even though I could give great advice, I doubt he would want it!

-Perhaps I should start tidying up his waiting room. I hate staring at those cobwebs in the corner and the magazines could be alphabetized. Perhaps my cleanliness will freak them out and they will call us back so my odd behavior will stop. This one might have potential!

-I dream about walking out after a long wait and never coming back to this provider of care. Maybe I would even give an eloquent speech before exiting that will express the feelings of others waiting too. Maybe they will applaud me as I walk out. But, I would probably be charged a fee for not canceling 24 hours prior to the appointment time.

-Perhaps I could start up a conversation with the others around me. Maybe we could all walk out together teaching that doctor a lesson. Maybe he would run out into the parking lot begging for forgiveness.  Maybe not...

-I envision myself inviting the doctor over for dinner. When he arrives, I escort him to the living room until dinner is ready. I make him sit there alone while I disappear into the kitchen delaying the meal as long as possible. I will smile as I announce, "You may come to the table now," an hour later than he planned.  Who am I kidding? He would probably show up two hours late anyway ruining my plans!

And as I dream and scheme, I hear my daughter's name being called. I am brought back to reality and stand up feeling like I have won the lottery as we walk past those poor folks sitting there reading old magazines and looking bored.

Today, I didn't have to start cleaning the office to get called back but maybe next time.

Jaycee waiting for an appointment

Therapy Tip: Building Language Outside

It's therapy Thursday--the day I give a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Building Language Outside

Warm weather is upon us! It's time to use outside activities to target language. Here are some easy ways to work on language development for toddlers or minimally verbal children.

*Swings: I love toddler swings that have the child secured in safely because you have control over the child's swinging. You can stop the swing and say, “Want to swing? Say ___.” Push them a few times and then stop them again to target a word.

            Words to target: up, down, go, stop, whee, push, high, more, please

*Action words: Naming actions and understanding actions are both important language skills. Being outside, allows you to practice different actions. Some examples of actions to try: jump, walk, run, throw, kick, and march.

            Ideas for actions: Play ball. Switch between kick and throw. Throw the ball past him & tell him to run.  March around the yard saying “march, march.” Find a stick and “jump” over it.

*Containers: Give your child a bucket or some kind of container. Let them walk around putting things in it. You can look for rocks, leaves, small sticks, flowers, etc. Use the concepts in/out when placing things inside and outside the bucket. Name the items that the child is putting in their bucket. You can also use the bucket to target following directions.

            1 step directions: Put this in your bucket. Take it out. Smell the flower.

            2 steps: Pick up the leaf and put it in. Go by tree and pick a leaf.

*Big/Little:  (For those over 2 years old) Compare two items outside and tell your child big/little or ask them, which one is big/little. Ideas: 2 rocks, 2 leaves, 2 balls, 2 sticks

*Cars: For something different, take your child’s toy cars outside. Let them drive over the rocks or slide them down a slide. Take the car through the grass or dirt. Give them a small cup of water & let them wash the car.

            Target words: bump, go, stop, car, up, down, dirty, clean, fast, slow

See you next Thursday for another tip!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

Odd Things I do in the Hospital as a Parent

The last couple of weeks have been chaotic. First, my family moved from the only home we have known together. If you have ever moved, then you understand the headache and pain of that.

If that wasn't enough to deal with, Jaycee started getting cold symptoms during our move. I increased her medications and hoped she would stick this one out at home. However, Jaycee's cold abruptly turned into an emergency on the 4th night in our new home. Off to the ER at 4 am we went! We have just returned from a 5 night stay in the hospital which included time in the Intensive Care Unit. 

When Jaycee is in the hospital, I assist with her toiletry needs and sponge baths. I order her food and help her get drinks. I hold her down for blood work and calm her when she's protesting another vest treatment. I give her oral medications, because she takes them better from me than the nurse. I watch her monitor and talk to doctors. This keeps me busy, tired, achy, and at times stressed.

Life with Jaycee in the hospital is just different. When I stay in the hospital, I find myself doing things I don't normally do. Some of these are coping mechanisms meant to distract myself from the chaos around me. Others are done out of boredom when things are going better for Jaycee yet we are sitting in a small room with nothing but a TV and internet.


Here's a few things I do in the hospital that I never do at home:


1. Drink sodas anytime day or night.
At home, I limit my delicious soda intake and would never indulge in them in the morning. But those limits are not present in the hospital.

2. Take showers in the middle of the day.
Morning showers are impossible due to Jaycee's needs and morning rounds. So, I tend to take a shower whenever Jaycee is eating lunch or is doing a long breathing treatment and doesn't need to be entertained by myself. Just finding twenty minutes to sneak out and take a shower is an accomplishment in the hospital.

3. Eat two candy bars in one day. Can you see I eat and drink my emotions?
Sad but true....Not even going to defend my actions on this one.

4. Binge watch an entire season of something on Netflix.
I never have time at home to watch a complete season of a show in a day or two. My husband and I have to block out time to watch a two hour movie at home and plan for interruptions. In the hospital, there are days that are thankfully boring. Jaycee might be napping or engrossed in a movie, so I start watching Netflix. Sometimes, I can't sleep at night or get woke up from an alarm causing me to watch more Netflix. The shows are a good distraction for me especially when Jaycee is making improvements. *She enjoys lots of Netflix time in the hospital too!

5. Spend an absurd amount of time on social media.
I can only watch Netflix for so long, then it's time to read my feeds from Twitter and Facebook. If you posted something on FB during an admission, I most likely read it (twice). I was so bored at times during this admission that I even went through my Google Plus feed! Being bored is a good sign, it's a sign that Jaycee is coping well in the hospital and that her care is going according to plan. I am glad I had bored moments with this admission because some are just plain scary and not boring.

Thankfully, we are home now. There are no more Pepsis at 5 in the morning. The showers are back to the evenings. I don't have access to candy bars. And, my time for Netflix and social media is back to a healthy normal, limit.

Hello There~

Thanks for stopping by!

My family is in the process of moving. My old house is cluttered with boxes. My new house is cluttered with boxes. Things still need to be packed and then unpacked. Right now, I feel like I am in a little bit of chaos. So, I will not be posting anything for a week or two. (Groan!) The boxes are taking priority over the blog.


So, please come back in a couple of weeks for new content.

Until then, check out one of my old entries:

Jaycee: No Longer A Scaredy Cat  (I happen to love this entry!)

Or, check out my friend's blog:
Two Upside Down Turtles - A blog about her children with special needs


Be back soon!
Evana

The Days I Have as a Mother

Sunday was Mother's Day here in America. It's the day we take a moment to express love and appreciation for mothers.

I love being a mom and am grateful for the two little ones I have been blessed with to raise. Jaycee and Elijah helped shape me into the person that I am. As a mother, I have had many different days with my children.

There are days as a mother when everything feels ordinary. These are the days we laugh, joke, watch movies, wait for the school bus, and do typical family activities. I feel like any other mother hanging out with her two children filling up juice cups and breaking up little fights between the kids.

There are days as a mother that I would rather forget. This picture was taken on a day while Jaycee was in the middle of a 24 hour impedence probe reflux study. A few hours before this picture was taken Jaycee and I both felt traumatized by the placement of this probe. She hated having the probe placed and I hated that I had consented to it.

There are days as a mother that have been very happy. The first steps, first words, kisses, hugs, and love exchanged are moments that are held in a mother's heart forever.

As a mother, there are days that make me feel proud. I love to see my kids love each other. I love to celebrate Elijah's spelling achievements and Jaycee's Special Olympics activities. Each child makes me proud in different ways.

There are days that are hard, painful, and scary. I have had many uncertain days that have involved my child's illnesses, surgeries, hospital admissions, or machines. When these days come, I realize just how little control I have over my child's life and just how terrifying it is to see your child so sick.

There are days as a mother that are amazing! The time we spent on our Make-A-Wish trip was the happiest time of our family's life. Watching your daughter have so much special attention and fun was unforgettable. The excitement on Elijah's face the day he received his dirt bike was another amazing day. (The look was different on my face!)

When you are a mother, you never know exactly what each day will bring with your child. You can only pray and hope that the days you have will be happy and blessed.

Therapy Tip: Puzzles for Speech-Language

Welcome to Therapy Thursday- the day I give a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's therapy tip is:

Puzzles For Speech-Language

Puzzles are a great tool when working with toddlers. Not only do they work on skills like matching and fine motor, but they can also be used to target speech and language goals.

Puzzles are easy to find and fairly inexpensive. Most of my puzzles were purchased at dollar stores or Wal-mart. Occasionally, I have purchased some through on-line specialty stores. But, you really don't have to look farther than a local store to find a puzzle to build speech-language skills.

When I'm looking for puzzles for my children in early intervention therapy, I'm thinking about what type of responses I can get from the child. I look for puzzles that can target a specific word or sound.

In general, I usually don't buy the puzzles that make sound effects. These are very popular in homes I go in, but too often, I see the child get distracted by the sound effect and not on an actual word.

If you are looking to buy a puzzle for your toddler or pre-schooler, then consider these things when you are shopping for a new puzzle or trying to figure out how to use puzzles you already own.

-Is your child working on single words?

                      
Finding puzzles to target single words or sound effects are the easiest. I like to use animal puzzles early on to model animal sounds (moo, bock-bock) and the names of animals. For the puzzle showing different vehicles, I might first just model the word "go" for a child with limited vocabulary. As the vocabulary increases, I will model harder words like train, boat, etc. If a puzzle seems to have no useful pictures or words to target, there's always the standard words: more, please, in.


-Is your child working on 2-3 word phrases?

When a child is working on phrases, they are usually working on colors too. I like to use puzzles like this bear one pictured above where the only difference in the puzzle pieces is their color. This allows us to work on a phrase like "green/red/blue bear" or "I want bear."


-Is your child working on a specific speech sound?

I like to use alphabet puzzles to work on sounds in isolation (b-b-b). Usually with toddlers, I will try to have them only imitate part of the consonant sounds in the puzzle as doing all consonants in one sitting would be too much.

If your child is working on a specific sound like /f/ or /p/, look for a word with that sound that can be used while putting each piece of the puzzle in the board. Sometimes, finding the word targets are easy and sometimes this takes creativity. I have a fish puzzle which makes practicing /f/ in fish fairly easy. Other times, I have to look at my puzzles and see how I can incorporate speech articulation work in them.

**All pictured puzzles are from the Target online shop

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

When my 6 year old asked, "Why does God make sickness?"

It was an ordinary trip home from school with my two kids in the back seat of my very stylish van. I mentioned to Elijah that in two weeks he will have to spend the night at someone's house while I take Jaycee to what we call "the far away hospital" for appointments.

This brought on our normal conversation about hospital appointments.

Elijah asks, "Is it just one night?"

"Yes," I tell him.

"Because sometimes I stay at grandma's for several days when Jaycee's at the Children's hospital," Elijah says and continues to reminisce about previous stays with grandma.

Then out of the blue our familiar conversation took an abrupt turn when he asked, "Why does God make sickness anyway?"

Wow!

I was caught off guard by my 6 year old already pondering one of life's great mysteries. I don't believe I thought about anything that deep until I was in high school but sickness never impacted my family like Elijah. My biggest question as a 6 year old probably centered on how I could convince my mom to let my Barbie dolls have a pool party in the bathtub.

Here I was at the end of long day with a question hanging in the air. I answered Elijah's question like this:
Well, I don't really think God makes sickness. God's plan is always good health for us and bodies that work right. This is what Heaven is-a place where everything is perfect. The Earth is not Heaven. The Earth has a lot of stuff in it that God neither wanted to happen to people or intended for people. But, there's sin and other things in the world that all lead to things going wrong like sickness. I don't think God wants your sister to be sick and take medicine. But, she was born into that body on Earth and it's what we are dealing with.

The answer satisfied him and the topic was then changed to some mundane topic of who has better food at their house -Aunt Steph or Grandma- and where he should stay while I am away for that one night.

Since that question was asked by my son, I have been asking myself a question, "Where did I go wrong?"

How did my son come to the conclusion that God makes sickness? This is something I never wanted Elijah to think about God. People often struggle with this type of question when they are faced in some sort of crisis of belief. I myself struggled with this idea of sickness and bad things happening to people of faith. I fought my way through difficult thoughts and doubt that nearly crippled me. I didn't want that struggle for Elijah, especially when he's 6 years old.

I have never said the clichés to him about if it's God will, Jaycee will get better. To me, these clichés can cause doubt. So if I have never talked about assigning Jaycee's medical issues to God, how did he come to that conclusion?

After some thought and prayer, I have decided I have made two errors. First, I have told Elijah that God makes everything. Maybe, I wasn't specific enough. I don't think God makes terminal illnesses or sickness in an effort to teach us something. Yet, I commonly tell Elijah that God makes Everything.

Secondly, I have spent very little time talking about our enemy as described in John 10:10 (The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.) I rarely talk about Satan and his plans to try to destroy relationships with God and to steal, kill, and destroy in general. I don't want to scare him, and I don't want to confuse him. Yet, my avoiding this topic has only told one side of the spiritual story that impacts all our lives. If Satan's agenda isn't discussed, then God can gets credit for every bad and good thing in life.

I hate that my son has confusing thoughts about our faith this young. But, I'm glad he is able to voice them to me, so we can reflect on them together. I'm thankful too that God is teaching me better ways to help him understand.


For more on my thoughts on a similar question with more scripture references, please read Does God make Down syndrome?

Elijah hanging out with his sister during a hospital admission