How do I teach friendship to my sweet girl that has no words? She is nonverbal and pretty blasé when it comes to her classmates. I cringe when her classmates’ parents tell me, “My daughter was so excited to see Piper. She kept saying her name over and over!” I want to say that Piper reciprocates. However, my sweet girl loves to watch and hear others but does not truly interact. I wish, pray, for the day that Piper will hug a friend without prompting or use her communication device to ask a classmate to hang out. I want her to have her bucket filled by being loved and being a friend to others. Her classmates get invited to birthday parties and go to father daughter dances. Piper would probably walk into one and then walk right back out. These events do not seem to matter to her. My heart aches that we do not even have even this fraction of normal, but I have to be grateful that she is not aware of “missing out”.
My husband sent me a text the other day telling me I should blog about Piper and her sweet ducky. He said I should share the story of Piper’s love for her stuffed duck. In an ambiguous manner, she demonstrates that real friendships last forever. It does not matter what your friend looks like, or what their limitations they have, because a true friend sees what is on the inside.
Now onto the tale of Piper’s sweet ducky. He was actually her brother’s Easter present. Piper received a bunny with an Easter egg body and her brother a duck with the same. She decided she wanted his duck, and they became inseparable from that day. This was over ten years ago! About a month into her “friendship”, ducky lost a wing. I am not sure where the wing went, but he was still able to perform his friendly duties without it. So, Piper’s sweet brother took a piece of plaid fabric and learned how to sew, so he could give ducky a new wing. My heart melted at his empathy and love for his sister.
Ducky’s wing lasted a few years, but his bill bit the dust quickly. Piper liked to chew on his duck bill and eventually chewed it off! My sweet mom made a new one out of a yellow washcloth and sewed it on. Well, next ducky’s head needed to be replaced, and sweet grandma made a new head for him with thread eyes that Piper would not choke on. Ducky’s body part replacements continued regularly.
I dreaded the day the ducky would disintegrate or be lost, so scoured eBay often to find a backup. One day, I hit the jackpot and found a replacement ducky! Piper was not sure about the new duck and tentatively split time loving them both. Then, it was apparent that new ducky could not replace her tried and true friend.
Last summer, we went on our first plane trip in 10 years to visit family in Washington for our niece’s wedding. Piper became ill and ended in the ER while there. Her ducky was the only source of comfort she accepted during this time. He was there beside her with a rotting head and only one wing. My sister in law was an angel and made a new head and wing for Ducky. These pictures say it all…
A friend is there for you no matter what state they are in, how they look, or how capable they are of loving you. Ducky brings Piper joy. She cradles him in her arms, brings him lovingly to her face, and pats him just like we patted her in the NICU. He is not pretty and kind of smelly, but Ducky is Piper’s friend. He is there when she needs him. He snuggles her every night. He can make her smile when she is sick and goes into surgery with her when needed.
I worry that one day this ducky will bite the dust, and I will have to persuade Piper to love the “pretty new one”. However, my heart is full that she shows love towards something. She is teaching me that I need to be okay with no pictures of dances with beautiful dresses or achievement bragging on Instagram. My girl knows how to love, she knows how to be a friend, and I will gladly care for her until the day I die.
“Intelligent children listen to their parents; foolish children do their own thing. The good acquire a taste for helpful conversation; bullies push and shove their way through life. Careful words make for a careful life; careless talk may ruin everything.” Proverbs 13:1-3 (MSG)
“Do you want to fail third grade and have to do it over again? Because that is what will happen if you don’t start paying attention. How could you not turn in your homework after we spent 3 hours on it last night!” These horrid words seeped from my mouth before my brain could stop them. My sweet son, sat hunched over the table, with tears streaming from his eyes. I was saying the exact words that I advise parents never to say to their child.
In my frustration of a long day at work, coming home to a messy house, and no idea of what I would make for dinner, I carelessly allowed my words to flow. These words had the power of tearing my child down. All day, I speak words that build up other people’s children. My students are spoken to in an uplifting and careful manner. My purpose is to build them up and help them see that success is within reach. In this moment, I did not listen to my Father, and allowed my foolish tongue to do its own thing. It tore down my child’s self-esteem.
God blessed me with a sweet precious son that learns differently. He struggles with ADD and dyslexia. School has always been hard for him. I see so much of myself in him because I too have dyslexia and struggled through school. If I understood his challenges, then why did I say cutting words instead of helpful words to give him hope and a plan to get organized? The answer is Satan. He wants to use our words to belittle and tear down our relationships.
In James 1:19 we are told to, “…be quick to hear, slow to speak, and slow to anger.” As a Christian, I need to remind myself of this in every interaction with others. My emotions have a way of blocking my ears from the truth, my mouth to speak before thinking, and igniting a flame of anger that is not true to who God created me to be.
I not only had to repent, but also spend much time healing the cuts that my words caused in my son. Those words can not be taken back, but can be made a distant memory. Their pain can hopefully fade with time, as I speak truth, love, and most importantly God’s plan for his life to build him up and never tear him down again.
Heavenly Father, Thank you for the gift of being a mother. I ask for your forgiveness. My words were toxic and harmful to my son. I did not intend to speak them, but allowed my flesh to take hold of my tongue. Please guide me and give me pause in every interaction with him. Allow me opportunities to speak life into him and help grow my son’s faith in you. In Jesus name, Amen.
Truth for Today:
Proverbs 25:11, “A word fitly spoken is like apples of gold in settings of silver.” (NKJV)
Reflect and Respond:
What words can you speak to your child today to build them up?
Today, pick something to praise about your child like a character trait, school assignment, kind word given, or action that will build your child up. Tell them how much they are loved and that God created them exactly the way they are.
I apologize for being absent the past few months, but my dance lessons have kept me on my toes. These dance lessons have been FREE! You heard me right, absolutely free, thanks to life. I have learned to waltz, tango, echappe, and even a little krumping. My technique is far from flawless, but I have survived and made it to the curtain call. Let me explain…
The school year started off smoothly, and I planned to waltz through my days with renewed energy and free time. We made the decision that I would resign from my teaching job to be more present for the kids. I would research and tour possible schools for Piper to attend next year. Sending our precious nonverbal 15 year old daughter into the den of high school hormones and the unknown is terrifying. We have stayed in our failing school district because we have been blessed with knowledgeable and caring teachers. However, high school is a whole new animal. I will share more about high school search in a future blog.
The waltz is supposed to be smooth with a unique rise and fall action. So, I embraced my life director, the Lord, and immediately tried to lead. I thought I had this all figured out. During the day, I would write, tour schools, and take Piper to doctor appointments and therapies. During the afternoon, I would prep dinner and then head off to tutor students. The tutoring money would equal my lost teaching salary. This was when I began my first dance lesson.
I thought I would be gracefully moving forward, but I had to learn the box step. In September, my mom was still recovering from her extensive neck surgery and unable to drive. So, I was her chauffer to doctor appointments and errands. She was still suffering with myoclonic jerking and in a lot of pain. During this time, my grandmother started to not feel well. One day, my mom called to ask me to pick her up and take my grandmother to the ER. We were shocked by the news that my grandmother had stage 4 cancer. My ideas of graceful smooth days gliding around freely turned into days practicing the box step over and over again. One step right, one step back, one step left, one step forward and then repeat endlessly. Every day was the same. They were filled with tears, waiting, and taking the lead for this family of strong women.
My next lesson started when my grandmother left us only 6 weeks after her diagnosis. The ballet term Echappe means slipping movement or escaping. My heart was broken that she slipped from us so quickly. She had been my support and listening ear for 46 years. I kept expecting her to pop over or give me a call to say she loved me. The lesson I learned is that in echappe, after the dancer jumps, she lands back on the ground in second position. It is okay for me to leap in sadness and grieve, but then I must bring my feet back down to be a mother, daughter, and wife. That is what my grandmother would have wanted.
We had a couple weeks to grieve and prepare for her celebration of life. I was honored to be the family representative to speak. There were so many fascinating experiences in her life that made her the strong woman everyone came to love. I was starting to enjoy this new dance of slow, slow, slow, but then my dance steps turned to quick, quick, quick. The tango was my next dance lesson.
The week after the celebration of life, my mom went in for a hip replacement surgery. Once again, she would be unable to drive and in a lot of pain. Her jerking returned, and we ended in the ER two days after being sent home, for fear there was blood clot. When we stepped into that ER, our heart beats quickened because this was the same place we sat for hours before learning of my grandmother’s cancer. My mom and I cried, laughed, and tried to regulate our emotions. In the tango, the dancers’ orientation is constantly changing. It keeps the dancers on their toes. The next few weeks, my focus was on quick, quick, quick to the new year so then we could go slow, slow, slow and start a new time of hope with no pain.
I planned to dance into 2019 with high energy and excitement. Then I realized I also needed an escape from the grief and realization that our life would never be the same. So, I started my Krumping lessons. The dance from was actually created as a faith based artform. The word K.R.U.M.P. is an acronym for Kingdom Radically Uplifted Mighty Praise. Youths started krumping to express their emotions in a non-violent way. This most recent dance lesson has humbled me. I need to rely on God Almighty and not dwell in a season of anger for all that occurred in 2018. I will Krump! Actually, I will ridiculously try to Krump and continue forging ahead with excitement and full belly laughing. If you see me, ask to see my moves, and I can guarantee that your day will be filled with laughter too.
Practice hope my friends, Jen
Do you wonder if your child is struggling with anxiety? I am excited to have a therapist from Art Play to speak.
Learn how to recognize if your child needs extra support for identifying and managing their emotions more effectively, plus gain three concrete strategies for helping them at home.
This is open to all parents in the community. We will be meeting at Christ Lutheran School in Phoenix. The address is 3901 E. Indian School Rd. There is more parking in the Altitude Center next door. Please park in the most northern spots close to Indian School to not affect the businesses. Hope to see you there!
I sat across from a mother with tears in her eyes. Her daughter had just been diagnosed with dyslexia and a few other challenges. The wordy scientific books recommended to her were daunting. She searched for an understanding and jokingly asked if there was a Dyslexia for Dummies book to read. This resonated with me for two reasons. The first reason being that there is no simple way to explain the intricate processing of the dyslexic’s brain. The other is that our children learning to live with dyslexia have probably felt like “dummies” before.
The word dyslexia means trouble with words. We need to impress this definition into our children’s minds. They are not dumb or less of a person because they struggle. Many call dyslexia a disability. Disability means not able to do something. Our children do have the ability to read, write, and learn. They just do it differently. This is why we should describe it as a learning difference. We all learn to tie our shoes differently, but we end up with the same result. It does not matter if it was made with bunny ears, loop over loop, or cross over and go through the hole. It’s a tied shoe that will not fall off.
Our children will learn, but we need to be patient. They may process sounds, letters, word, or directions in a different manner. They have such an amazingly complex network of neurons, that it may take a bit longer than you would expect to process information. As a parent and a teacher, I have to remind myself to stop, wait a minute, and maybe even describe a sound or word in a different manner to get those neurons connecting. Give your child the time. Do not assume they are zoning out or choosing to be difficult. I am pretty positive that they do not want to be different.
As you embark on this journey of acceptance and parenting a different learner, please be an advocate for you child. Advocate for them to try new things, spend more time doing what they are good at, and give them tools to make it through school. Work with your child’s teachers to explain that your child may need to access information and/or be assessed in a different manner than others.
I will be honest, that I struggle with the advice some parents are given when seeking a program to help their child with dyslexia. Some have been told teachers should never require their child to use a dictionary, take a spelling test, write in any subject, or have any homework. It seems futile to fight for a child to not be labeled disabled, but then treat them as disabled.
School is practice for life. There are modifications that can be made to keep your child from feeling like they are not able to learn. Shorten the list of spelling words, excuse them from mindless writing of the spelling words 10 times each, and then after the spelling test, give them tools to make corrections. The teacher should circle the missed words, then let your child use a spell checker, a laptop with spell check, or even a word wall. The goal is to get your child to try. We want them to understand they learn differently, and have the right to use different tools to help them learn.
Set a time limit when your child is writing. Let them know you understand writing is difficult, but want them to practice. After the kitchen timer beeps, scribe for your child, and then write the teacher a note detailing how long they wrote, and then you wrote exactly what your child said. Do not autocorrect their writing or interject your thoughts, because the teacher knows your child struggles with spelling and writing and can spot your work immediately. Set your child up with talk to text or a program like Dragon Naturally Speaking if their fingers can not keep up with their imaginative writing.
You have the opportunity to take a situation that many of you have grieved about and turn it into something wonderful. Yes, your kid learns differently. Some people need glasses to see and hearing aids to hear, but they can still live a full life. Teach your child how to work hard and embrace their differences, because those differences are what will make your child shine in life. Each obstacle they overcome, each time they have to work harder than their peers, each tear of frustration shed is brightening their light and creating a star beautifully different from others.
Recap of my first parent education and encouragement hour. Hugs, Jen
Verb – perform (an activity) or exercise (a skill) repeatedly or regularly in order to improve or maintain one’s proficiency.
Have you ever caught yourself telling your child that practice makes perfect? I have been guilty of this a time or two. Recently, I was running a parent teacher conference; the child’s parent mentioned the phrase “practice makes better”. It started a chain of thoughts running through my head for days.
I realized that as parents, we take our children to multiple practices weekly and some of you multiple practices daily. Parents ensure their child practices baseball, soccer, football, dance, and even academic work like spelling words or multiplication facts. Growing up is full of practice. Sometimes, we require our child to continue practicing even if he or she would like to quit. Because our parents taught us never to be a quitter, right?
Conversely, as we become adults, the idea of practice seems to drift from our minds. We have jobs to do, money to make, and if we have not learned a skill by now, then we assume that we never will. I think we need to grasp on to the “practice makes better” concept and live out what we preach.
Parenting is hard. We are not guaranteed our child will mind, listen when we speak, stay out of trouble, be an A+ student, or be able to grow into an independent adult. Parenting also includes the ability to repeatedly interact and improve our child’s life. Their childhood is a gift of time. It is a set parameter of years that we need to use as our practice.
When our daughter, Piper, first started therapy at the Foundation for Blind Children, we were told to be patient. They explained that due to her lack of vision and poor muscle tone, it could take her 1,000 to 10,000 times to learn a skill that typical kids could learn in about 20 practices. Her response times were delayed severely. I would ask her to pick up a toy from my hand, and when she did not respond, it became frustrating. It was easy to pull my hand away, a minute after asking her to pick it up, and assume she did not want the toy. However, being patient revealed that it took her about 2 minutes to process the command, tell her hand to move where it needed to, and keep her body from falling over. If I had not continued this practice, she would have given up and assumed she would fail.
As parents, we need to practice daily. We need to practice patience, practice listening to our child, practice having hope in their future. Please do not pull your hand or heart away when your child does not respond. It may take your child multiple practices to become the better that they can be in this life. None of us are perfect, but those that practice compassion, empathy, and hope seem to have a better ability to handle life.
VERB past and past participle of spend.
ADJECTIVE having been used and unable to be used again
synonyms: used up · consumed · exhausted · finished · depleted · drained
This is actually one of my favorite photos from Piper’s intensive therapy. It represents the sheer exhaustion of giving every ounce of strength she had daily. Pulling herself forward on the scooter board was the last activity of each day. She hated it! We dreaded it also, because we had to come up with some tangible motivator to help her muster those last ounces of energy. She never quit. She lifted her head, protested with loud cries and tears, but she finished it every time.
How many days and hours do I feel spent and refuse to finish? What task is the Lord prodding me to accomplish, yet I lay down and cry? I often feel depleted and that I will never make it through the valleys. But, somehow I do.
Almost every definition of spent I found included the phrase “unable to be used again”. This is where the secular world is mistaken. Piper used every ounce of energy, yet each morning, the Lord graced her with renewed energy. She did not refuse to get out of bed. She may have protested and whined about walking in some days, but she did. Jesus said while dying on the cross, “It is finished,” but we know that was not the end. He died so that we can get up each morning with the opportunity to start again.
I look at this sweet picture of Miss Piper daily. It is a constant reminder to me that sad days will end, the struggles will wax and wane, there will be light in the dark places, and I will NOT accept that my life could be used up.
Let’s challenge each other to live a “spent” life. Let’s pick up our broken and tired bodies, spend every ounce of life we have in loving our children, spouses, friends, and selves because our journey is not finished.
believe [bih-leev] to have confidence in the truth, the existence, or the reliability of something
When the Lord opened the pages of this story, it seemed impossible to complete. He put the desire in my heart to seek more for Miss Piper. He knew that it was possible, and I just needed to believe. Thank you everyone that helped this story to come to fruition. It is your support through prayers and donations that God used to help write her story.
My mom bought Piper this shirt for her to wear the last day of therapy. Its phrase, “She believed she could, So she did” was the mantra to get through the daily grind. Piper cried, she protested, she lied on the ground and refused to get up. Somehow, He gave her the strength to continue. She was blessed with amazing therapists that loved her and gave her a reason to keep going. Some of them used music. I did not know that Piper liked Taylor Swift or Bruno Mars. She actually used her Aug Comm (iPad) to tell me her teacher played their music in class. The other therapists quickly learned that Piper loves books. If someone reads to her, she will do anything to get to the next page.
Piper jumped on a trampoline, rode an adaptive tricycle, got up to 3.7mph on the treadmill once, walked up and down the main stairs a million times, sucked out of a straw, and learned that she CAN DO ANYTHING! Her sweet brother was there to cheer her on and help her when she fell. God sure blessed me with these two.
This story is not finished. It is only the beginning of many pages that will share of triumph and some that will share of frustration and sorrow. These Toby Mac song lyrics remind us to keep walkin’ and Piper is going to do that. He isn’t finished yet.
Move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Hold on, hold on
Lord ain’t finished yet
Water sustains life. People swim in it, bathe in it, ingest it, and probably would not describe it as dangerous. However, when you or a loved one aspirate, it becomes dangerous. Piper, our daughter, was diagnosed as a silent aspirator at birth. My plans of breast feeding disappeared with the introduction of an NG tube and morphed into hours of pumping then gravity feeding her through a tube. My milk was supposed to be the base fluid of her living organism, yet it held the power to end it.
As she aged, we were able to get rid of the feeding tube but became tethered to thickener. The only way Piper could drink fluid was to have it thickened to the point that she would not aspirate. Doctors use a test called an MBS, modified barium swallow, to determine if a person is aspirating. A person drinks fluids of different consistencies containing barium while being observed via radiation technology. Piper failed every MBS. So we started thickening liquids to honey consistency and a year ago finally graduated to nectar consistency.
What did this mean for our family? We could not allow her to play in the pool or bath without supervision and physically keeping her head above the water. She could not easily grab a juice box or water bottle at a gathering. Her teachers were not allowed to give her anything that I had not prepared to appropriate consistency. We even had to thicken liquid Tylenol or Benadryl. Jello, soup, and ice cream were not allowed.
A year ago, we restarted a therapy called Vital Stim. It is the placement of electrodes to the throat area for an hour a session, while actively swallowing, and is supposed to strengthen the swallowing function. We had tried it when Piper was three years old, but it did not work. The Lord opened the door for us to get 48 vital stim sessions covered at Phoenix Children’s Hospital last year. Piper did well, but was still aspirating. Schedules and paperwork kept us from being able to complete the therapy to efficacy.
Amazingly, in the past 2.5 weeks of vital stim at NAPA, Piper is thickener free! We have weaned her off of it and are cautiously introducing different drinks and cup types. This is a miracle that my sweet mother, Grams, prayed for and claims daily.
In addition to vital stim, the sweet speech pathologist at NAPA, has taught Piper to suck on a lollipop, stick her tongue out to lick a lollipop, and almost efficiently drink out of a straw.
In John 4:14 the Bible says, “but whoever drinks of the water that I will give him shall never thirst; but the water that I will give him will become in him a well of water springing up to eternal life.”
We are blessed that this therapy opportunity came to fruition and has been such a success. Piper will have eternal life.