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An #ausome story of friendship

Two are better than one because they have a good return for their labor. For if either of them falls, the one will lift up his companion. (Eccl 4: 9-10)

Earlier this week, my dear friend Renee offered to give Jack a ride to social skills group along with her son Sam. Jack loves Sam and Sam’s three brothers, so he was thrilled to carpool to group with some of his very favorite people :)

As Renee and I were chatting yesterday, we pieced together the following acts of friendship and kindness exchanged among all three boys, and I wanted to share them with you:

When they arrived to pick Jack up, Renee’s nine-year-old son, Nate, hopped out of the car in the pouring rain to get Jack. Renee braced herself for what she felt would surely trigger a meltdown for Sam – he would want to go in, then he would refuse to leave, and then they would never make it on time to the social skills group. But to her joyful surprise, Sam called out, “Nate! Take good care of Jack please! Promise!” 

Nate arrived at our front door moments later and offered to help carry Jack’s things. When Jack saw Nate, he gave him a big hug and said, “I love you, Nate.” Nate returned the hug with a smile before Jack bounded happily down the stairs toward their car. When I got to the car to help load up Jack, he and Sam were sitting side by side while Nate set up Jack’s favorite movie for them to watch – Cars. 

Later, Nate filmed the two of them singing “Life is a Highway” in their seats, side by side and sent it to me. I smiled from ear to ear. Jack was so happy riding with his friends, watching his favorite film. And, as a mother, it was a joy to see him stand on his own and form friendships with others who opened their doors and their hearts to him.

These three precious children demonstrate that true friendship lives and grows beyond boundaries. It is rooted in love. 

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. (1 Cor 13: 4-8)

flourish

Do you have an #ausome story to share? We’d love to hear it! Email it to wmpsalm139 {at} gmail {dot} com and it may be featured here on the blog!

My child is ausome button TM

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I am often asked, what is autism? When asked this question, I first provide a definition much like this one:

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social interactions and social communication and by restricted, repetitive patterns of behavior. It affects the development of the brain, causing difficulty with behavior, communication, learning, and social interaction. (May Institute)

I then point out that while having a definition of autism is helpful in defining the challenges children like my son, Jack, face, it does not provide any insight into the amazing gifts children on the spectrum have. And while this definition defines a condition my son has, it does not define my son.

So, who is Jack? Jack is a…

Loving

Determined

adventurous boy

brilliant

handsome

Joyful

Child of God

My child has autism. He also is awesome. And I believe your child is, too. Join our family in the My Child is Ausome™ campaign by sharing the badge below with your friends and family! Simply copy and paste the image or grab the button on the sidebar, then share!

My child is ausome button TM

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Coffee with God: Endurance + A New Series

Coffee with God: Endurance | wonderfully-made.net

Lately, I have been struggling with endurance, with persevering through the challenges of this special needs journey. Then this morning, I came across an email with a link to this beautiful blog post written by a mother, Kathryn, whose young daughter sustained a severe traumatic brain injury in a car accident in 2010.

In the post, Kathryn writes:

I’ve accepted that loving Anne requires a boat-load of perseverance…the amount of patience required to persevere with therapy and school work seems impossibly infinite. I fall so short of what Anne needs. My inadequacy keeps me tethered to God.

Bottomline: I need to live a life characterized by ENDURANCE…

Her words spoke straight to my heart. I need God and I need endurance.

After I finished reading her post, I stood up from my desk, put on my running clothes and shoes, and headed toward the path that winds along the sea in front of our house.

No music, no timed pace. Just me, the road, the ocean, and God.

About 15 minutes into my run, when my mind felt clear enough to allow my heart to speak, I asked “What’s next, Lord?”

And in my heart, I heard Him speak.

flourish

Coffee with God has drawn me closer to Him, to you, and to that which binds us together – our love for Him and for our families. And I am so grateful. It lifted my heart through a season in which we were not able to attend church and taught me that God’s love is greater than circumstances. But now, I feel He has strengthened our family to try again. To return to church. To begin anew.

I want to thank you for joining us each Sunday. It has been such a joy to share this weekly ritual with you and I hope and pray it has brought you hope and encouragement along the way.

And now for something new…

Love Letters with God: A New Series from wonderfully-made.net

For several years, I have written in a prayer journal in the form of letters. I am nervous, but also excited to share this medium of prayer with you and hope it will encourage you along your own faith journey. The first installment of this new series will go live on Monday, May 5th, and I hope you will join us!

May God bless you and yours this Easter week and praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead (1 Peter 1:3)

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In Monday’s post, I referred to a letter I sent to Jack’s pediatrician regarding our concerns about our sweet son and I would like to share it with you.

Dear Dr. R,

A few months ago, my husband and I met with you regarding Jack’s behavior.  What began as bad tantrums, perfectionist/OCD tendencies, interesting ways of expressing himself, and a strong intellect has spiraled into a very concerning situation. My precious Jack has emotional breakdowns daily. These are not tantrums, but complete meltdowns that can last for hours leaving him exhausted and begging to be held out of fear of not understanding his inability to cope.  Some days are “milder” than others with these fits lasting only 30 minutes to an hour. Most days though he goes from one emotional breakdown to the next – for hours on end – sometimes we can identify a trigger, many times we cannot. Suffice to say I have been asked by other parents and teachers if he was having a seizure or had broken a limb on numerous occasions – that’s how bad and concerning these breakdowns are. 
 
He can solve geometric shapes puzzles, recite dozens and dozens of books from memory (including their authors and illustrators), identify states on a map, sound out words, and build complex systems for a child his age (figures out that pieces of different trains/toys can be linked together because parts of them are magnetized), but cannot answer “yes” or “no” to a simple question and cannot choose between two objects – “would you like to wear a red shirt or a blue shirt, Jack?” Simple questions like this are never asked in our household for fear of the aftermath and anxiety they cause our son. 
 
Jack can detail Scripture and Bible stories to the letter, identify dinosaurs by their Latin names and count to 100 but cannot eat an orange without breaking down because of the texture, cannot get to sleep at night without a rigid and demanding routine, and, lately, can hardly sleep at all.  He never takes a nap.
 
He can tell you the next song that is about to play on a song list based on the last song he heard, identify nocturnal animals, draw correlations between logos, places and books but cannot go through a diaper change (using the potty is out of the question) or dress himself without thorough instructions and a lot of assistance. 
 
He can scale a ten foot climbing wall (which he views as a puzzle), but cannot make it through our house without walking into door jams, banging his head into counters, or falling out of chairs when asked to sit still.  He also has a difficult time making eye contact.  Throughout the day when I speak to him, I have to say “Jack, please look at my eyes when I speak to you.”  
 
He can identify every color and animal you can imagine (I mean everything from maroon to an orangutan) but has a difficult time relating to children his age and cannot walk into stores, malls, or even preschool at this point without having a breakdown that lasts for hours, and sometimes days. 
 
Throughout the day he has to bang his head (thankfully on a soft surface), bounce on his bed (on his bottom), and rock in a swing in order to cope with things that you and I regard as “normal” – dropping a Cheerio on the floor, stacking books on a shelf (they must be in a very specific order), skipping a word in a story (something as inconsequential as “a” or “the”).  He can rock, bounce, or bang his head for hours on end if I don’t coax him to another activity. 
 
He has a difficult time understanding emotions.  For example, when we do the Sign of the Cross (we’re Catholic) “Father, Son and Holy Spirit,” he scowls and says “the Holy Spirit is angry.”  Why, we have no idea.  Another example is when we very calmly ask our dog to go to her bed or tell her “no” (we never yell), Jack falls apart and starts pounding his fist in the air saying “Bad!  Emma is bad!  Emma is angry!”  Again, we have no idea why he says this and have very gently tried to explain that Emma is a dog and sometimes, just like people, she makes a mistake and needs to be corrected, to no avail.  He genuinely does not understand.
 
Jack is also developing phobias/fearful fixations, including our dog (the sweetest, gentlest, most tolerant creature you have ever met), fire drills (they had one at preschool, and though the other children didn’t enjoy it, Jack had to wear sound proof earmuffs just to cope and has spoken about it every day ever since – it was several weeks ago), and bugs (he panics whenever he sees one).
 
I found out recently that Jack’s school had to bring in an additional teacher (who serves as the special needs religious education coordinator for the parish) to his classroom just to help him transition from one activity to the next (transitions are very difficult for him), to help him stand in line, and to sit still during circle time.  We have spoken extensively with his teachers and the preschool director at his school, and they believe, as we do, that Jack has special needs that require attention.  
 
As all of this is going on his brain is growing – rapidly. In order to keep up, I have been homeschooling him at a kindergarten level which he is blowing through quickly. I am up til midnight most nights planning curricula, activities and lesson plans to keep up with his mind, while also trying to sort out his developmental struggles, taking care of our 6 month old baby, managing our household and my husband’s weekly travel schedule.  We are exhausted and nothing we have tried in order to help Jack has helped him, in fact he is getting worse by the day. 
 
Our hope is that you may be able to lead us in the right direction for social, behavioral, and developmental assistance and/or therapies.  Our son is a treasure to us and is incredibly gifted, but is struggling so much to cope.  We trust you and will take your advice to heart.  
 
Thank you, Dr. R, for taking the time to read this letter.  May you have a blessed new year!
 
Sincerely,
 
Katie Emanuel
(Jack’s Mom)
Over the past year, I have sent this letter to friends and family members, doctors and therapists to explain our beautiful boy and the challenges he faces. It has been a great tool not only for advocating for our son but also for opening up conversation and talking about autism. And I hope it will help others, too!

Over the past year, I have sent this letter to friends and family members, doctors and therapists to explain our beautiful boy and the challenges he faces. It has been a great tool not only for advocating for our son but also for opening up conversation and talking about autism. And I hope it will help others, too!

Are there any tools, articles, blog posts, letters, or resources you have used to share your child’s unique needs with others? If so, please share in the comments below!

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On courage and listening

On courage and listening | wonderfully-made.net

In the fall of 2012, I got a phone call from the principal of Jack’s preschool.

“Mrs. Emanuel?”

“Yes?”

“Hi, it’s Ms. B from Jack’s school.”

I swallowed the lump in my throat. Jack was struggling in school. I knew it and she knew it, and the time had come for us to discuss it.

“Hi, Ms. B. Thanks for calling.”

“Hi,” she said kindly, “thank you for taking the time to chat with me. I just wanted to discuss some of the behaviors we are noticing in Jack at school and wanted to see if you are noticing them at home, too.”

I took a deep breath and said, “I’d be happy to talk through that with you. What’s going on?”

Ms. B told me that she and Jack’s teachers were noticing a lot of anger, frustration, and confusion in Jack. Specifically, he had a difficult time moving from one task to the next and screamed whenever the class transitioned to a new activity. He had grown attached to certain toys in the classroom, and would fall apart when another child wanted to play with them or when it was time to put the toy down and move on to something else. His frustration and anger were explosive and it was extremely difficult to help him calm down.

I listened intently and told her I had seen similar behavior at home as well. At the end of our conversation we agreed to touch base again in a few weeks.

puzzle piece

A couple of weeks later, Jack’s teacher contacted me. She shared the same concerns the principal had shared, and provided more examples of the struggles Jack faced.

Jack’s vocabulary was exceptional, she said, but he struggled to express himself and to understand others. He was not able to answer age-appropriate questions and was confused by emotions. He also demonstrated a strong sensitivity to sound. During a fire drill at school one day, he became so distressed by the noise that the school music teacher had to provide him with noise cancelling headphones and guide him through the school as his own special helper. Additionally, he lacked an understanding of personal safety. He often wandered from the rest of the class and even ran into the parking lot one day when the children were walking from the school building to the chapel. She ran after him and called his name, but he did not respond.

I told her I had noticed similar behaviors at home. Jack would scream and cry for hours if I asked him to transition from one activity to another or if the day did not go according to his design. And while Jack’s vocabulary, memorization skills, and aptitude for letters and numbers were off the charts, he had a very difficult time communicating his needs or talking about “normal” things a typical three-year-old child would talk about. He was not able to answer questions or make a choice between two objects. His frustration turned into anger, and discomfort into panic within moments, and he had to rock or bang his head all throughout the day to calm himself. Additionally, Jack had obsessively talked about the fire drill from the month before every day since it happened.

Soon thereafter, Jack’s music teacher (the same teacher who helped him through the fire drill) contacted me about bringing Jack to her integrated music class. During the class, she and I began talking about Jack and her owns son, Shawn. The similarities between our boys were striking and for the first time, I felt like someone understood the challenges we were facing. She asked if I would be willing to meet with her at school later that week. I agreed and when we met, pieces of the puzzle began to fall into place. At the end of our conversation I was certain Jack had needs beyond those of a “typical” three-year-old boy and I set out to find the answer.

After a lot of prayer and with the support of some amazing friends, I emailed a letter to Jack’s pediatrician detailing all of the challenges Jack and our family were facing. The pediatrician then recommended we see a specialist, and in January of 2013, Jack was diagnosed with autism.

puzzle piece

It took great courage for Jack’s teachers to share their observations of Jack, and I am so grateful to them for their courage. There is a tendency when someone presents concerns about your child, to be defensive. To retort with “he’ll grow out of it” or “mind your own business.” Believe me, I’ve done it. And while in some situations it is true that others should keep their opinions to themselves, I have learned  to listen to those who voice concerns about my child out of love.

Perhaps you are on the fence, wondering if you should pursue a diagnosis. Perhaps you are scared about what that diagnosis might be and how it will change your and your child’s lives. My encouragement to you today is to be courageous. Stand up and speak for your children when they need you to. Advocate for them when they need help, support, empathy, and love. But also listen. If a parent, friend, family member, or teacher presents concerns about your child, listen. Even when it’s hard. Listen so that you can provide your child with the special care and support he needs to succeed and grow. And finally, listen to the still small voice in your heart, for “the Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.” (Isaiah 58:11)

Listen. Even when it's hard.  wonderfully-made.net

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