Dyslexia – a Disability or a Difference?

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Photo by Sharon McCutcheon on Pexels.com

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.

Parent Encouragement and Education Hour – Sept. 5

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Hey parents,

Do you struggle to understand why your child cannot read, spell, remember multiplication facts, or stay on task? Your child may just learn differently.

Join me for an hour of encouragement and learn more about learning differences.

It’s next Wednesday, Sept. 5th from 9:30-10:30am.

Location: Christ Lutheran Church and School
3901 E. Indian School Rd. Phoenix, AZ. 85018
(602) 957-7010
*More parking in the adjacent business complex containing Altitude Trampoline.
Please park in most northern spaces & not in front of the businesses.
Please share with friends, parents, teachers in the community. All are welcome.

Hope to see you there, 

Jen.

Practice

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prac·tice
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.

Keep practicing!

Spent

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 

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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.

 

She believed she could, so she did…

believe [bih-leev] to have confidence in the truth, the existence, or the reliability of something

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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

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wa·ter [ˈwôdər, ˈwädər] NOUN a colorless, transparent, odorless, tasteless liquid that forms the seas, lakes, rivers, and rain and is the basis of the fluids of living organisms.

 

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.

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