Are you new to a diagnosis of your child? This lesson is probably the hardest to accept because the raw emotions of your child are involved. Do yourself a favor right from the start of this special life and get used to the ever-changing and revolving doors of staff, helpers, professionals, care providers, sitters, doctors, nurses that will come into your world and then quit. Those special people in your life that you shed tears with and shared personal life events with will eventually change careers. They may move to other positions or leave town. Be prepared as your family will feel a loss. It's the nature of the beast, and as the saying goes... life happens.
Every person in your child's life is meaningful. Your time was invested in that provider. As a parent, it is difficult when you see your child get emotionally attached to a person. Then that trusted "friend" leaves or moves on from their position, and now you and your child will feel a sense of loss.
Recently we experienced this with my daughter Allie's music therapist. For two years, consistently, every Monday at 3:30, Ms. Ashley would visit to play and teach music therapy together. In those two years, I tweaked strategies and sometimes gave Ashely advice so she would be successful in teaching Allie. Ashley, at one point, witnessed a seizure that my daughter had. Emotions ran high that afternoon, and real-life lessons of seizures were taught to Ms. Ashley in that hour of "Music Therapy."
We forged on and months had passed practicing music happily. Then one fall afternoon Ashley pulled me aside after a session, "Ms. Brown, can I talk to you for a moment?" My heart sank; I knew this was not going to be a fun conversation as I sensed she was serious.
"I'm taking a new position at a nursing home in Centennial, where I'm going to be their new Activities Director."
There it was - the two-week notice. It came, and now we start the process again.
The weight of responsibility now falls onto the parents to prepare their child for when care providers quit. We now have to take the time to explain the person's last day will be next Monday at 3:30.
I deliver my news to Allie after Ashely's last music lesson.
"You will not see Ms. Ashley your music teacher again my darling. I am so sorry." I said sadley.
"Okay mom, why? Did she move away?"
"No, she will be working in the next city a few miles away from here with adults teaching them music. Won't that be nice for them?" I lightly explain in a way she can comprehend in a positive light.
It is harder on the parent or care provider than the child in some cases. I am one of the lucky ones where my child just moves on to the next one. But so many are not as fortunate as I. However, the sting is still present in my heart.
Please comment if you experience this. I ask you to offer advise for those of us that go through this transition. What do you do? What do you tell your kids? How do you move past?
It was 2nd Grade, Mr. Johnson's English class circa. 1982. We were instructed to to write a four-line poem about nature. However, there was a catch and rules to follow! The Japanese style poem, Haiku, specifically has 17 total syllables; 5,7,5. Rarely do these poems rhyme. But mine did as a default.
Forrest by Joni Morgan
Deep and dark fortress.
How you must long for water.
The drought must be stress.
There it is. My first poem. It had to rhyme. I mean what 2nd grader doesn't like to rhyme?
I loved poems in those early years. I had a blast rhyming for my teachers, family, and friends. I graduated into short stories. And, for the most part, fiction. When I was of age, I worked in a public library. There, I got a taste for science fiction. Fascinating! Worlds and universes were vast. Almost too much for my little fiction mind.
I crawled back into my non-fiction love. And, In high school, I was crushed to find out my favorite book, The Bridges of Madison County by Robert James Waller, was entirely fictional. I recovered. Moving forward, I was more careful with my choices of non-fictional book choices. I invested time in them. Learning about life and what do other people do. I read books carefully. What have others done with their situations? How did they recover? What mistakes did they make? What triumphs? Books have become my personal toolbox navigating through this crazy life.
Today, I am a grown woman, happily married with two children and a golden retriever. I write about my life. First, it was a simple journal. Then an online blog. It has evolved into a more than a 30,000 word manuscript on raising my daughter who lives with PCDH19 epilepsy. I love writing about my beautiful purpose of raising my daughter. It's therapeutic. It's an outlet.
Whenever I meet new people, my absolute favorite question is what is your favorite book? I then open my smartphone to enter their answer. Maybe someday I will read from my long list of others favorite books.
Until then I got work to do! If it was easy, then everyone would be published!
What is your favorite book? Leave a comment below.
April 2 is World Autism Awareness Day
And, April is Autism awareness month. This month if you are on social media you will see "light it up blue" or an article or an image that will bring awareness to ASD which is short for autism spectrum disorder. It is a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior.
I get it. I was like most people before my daughter got diagnosed with autism over a decade ago. I did not pay attention to anything special needs period. But then things changed after that day. My life changed. My perspective changed.
Before that, I was in my own little perfect world. Deep into insignificant issues like working full-time and planning my next beach vacation.
I had a greater purpose after ASD entered. I became more empathetic. For example, because, I as a parent was living daily with meltdowns, sensory issues, and teacher conferences informing me about how disruptive my daughter was in class. From then on I did not judge the dad or mom that was leaving their full grocery cart in the middle aisle with their child in tow having the worst temper tantrum I had ever seen.
I was more understanding of these situations. My empathy grew stronger for parents like myself that needed to get through another tough day with their child that might have something wrong with their brain.
I was that parent leaving my groceries at the store.
For whatever battle you're fighting, someone is fighting another battle just as hard. And, autism is ours. We love that April is autism awareness month and April 2 is autism awareness day. For us, it’s 365 days of autism awareness day. I write to you not to feel sorry for me. I write to inform. We are good. Because in our house, love is strong and no small accomplishments go unrecognized. Shout out to all that are fighting something unexpected.
For over a decade we did not know the root cause of our daughter Allie's seizure disorder. Having the why unanswered was incredibly difficult, to say the least. I felt like an erratic mother bear searching to no end on everything as to why her brain was broken. Desperately scraping surfaces for any clues. I could not rest well without knowing. Negative on both sides of family history for mental illness, chronic conditions or any seizure disorder. Baffled. I was fishing in ponds of medical guesses, and mentally I was running out of bait.
September 2014, around midnight, Allie age 11, sleeping in her bedroom just down the hall from us. I was in my dark bedroom Googling down a rabbit hole about pediatric epilepsy as I have done a thousand times before. I came across the PCDH19 Alliance website and in one paragraph I was introduced to PCDH19 epilepsy. As I read further the bullet points listing out symptoms were Allies. My eyes opened wide, and my heart was pounding as I read:
What Are The Symptoms Associated
With PCDH19 Epilepsy?
I never heard about this kind of epilepsy. I continued to read the entire site. Feeling excited and scared all at once.
“THIS IS ALLIE!” I said to my husband lying next to me.
What stood out the most while reading posts from other families. A small detail, but a genuine trait of our daughter, was that these children loved swimming just like Allie.
I immediately messaged the website explaining who Allie is and the similarities with other children with the gene mutation. Delighted and shocked to receive a message back at that hour from the admin.
“It sounds like your daughter has PCDH19 epilepsy. Have you ever had an epilepsy gene panel done for her?” From that message, our lives changed.
"No, we have not heard of that. But I will have the doctor order it." I wrote back. Finally, our first solid clue and it was a big one. My mind racing. Could all this be the result of a gene mutation? Could we have an answer from a simple blood test? It was more than I could fathom.
I was mad, outraged, happy and sad all at the same time. My extreme emotions ran through me hours into the night. Why hadn't our neurologist offered this simple test before? I needed that epilepsy gene panel ordered for Allie.
4 o’clock in the morning, exhausted after reading all I could about genetics and PCDH19 epilepsy, I collapsed in a deep sleep. I woke at 9 a.m. called the doctor's office at the Children's Hospital Neurology Clinic explaining that I needed a specific gene tested. I was directed to the genetics department shortly after and was then assigned a genetics counselor. They did their administrative work behind the scenes to get the test ordered and ultimately it was paid for by insurance.
Seven long weeks after Allie's blood was taken, my phone rang. It was the genetic counselor. Her words echo still to this day.
"Joni, you were right, she IS positive for the PCDH19 gene mutation.” I ugly sobbed in the middle of her sentence — the rest of the day a blur.
A bittersweet feeling afterward as our family finally had an answer. Heartbroken, as there is no cure for my daughter's rare gene mutation. The medical treatments are no different. After all, it's only words on a piece paper: important words, no doubt along with a crucial diagnosis.
The fact remains, Allie is who she is and that never changes; however, I am grateful for the unanswered question that was finally answered after ten years of not knowing the WHY. It changed me on the inside. A calm had entered my psyche. My motherly instincts now verified.
Social media; take the good the bad and ugly from it, I chose to take the good from it, and I now use it as an educational tool.
A dear friend of mine and I have a lot in common in regards to raising our children with special needs. Recently we had a discussion. We get similar comments from friends and family that say, “I don’t know how you do it.” Followed by an intense stare. How does one respond to this?
First of all, I don’t have a choice. I love my child, Allie now 15. She lives with PCDH19 epilepsy and autism. Challenging at times but I strive to support her the best way I know how. Secondly, I don’t do this alone. I have support. I take extra time when choosing special people in her life that truly care for her. Also, various professional therapies are crucial. They are an important element to help her live the best life she can live.
Massage Therapy is one kind of therapy that is essential for a teens growing body. Allie has aches and pains just like anyone else. A professional Massage Therapist named Julie from The Child and Family Therapy Center of Denver arrives at our home and provides Allie with massage to relieve muscle tension and help with her tactile sensory issues.
Session with Julie, Massage Therapist
From The Child and Family Therapy Center of Denver's website.
For children with Autism, research has been published indicating that massage may provide relaxation, stress reduction and calm muscle spasms. Research has also demonstrated that this type of intervention may promote more on-task and social relatedness behavior during play, children with ASD show less erratic behavior, and are more attentive after receiving massage therapy.
Allie enjoys her time with Julie. It relaxes her mind, body, and spirit while providing benefits that I could not give her.
Music Therapy is another treatment that Allie benefits from. She had a strong aversion to songs on the radio, musical instruments, and other people singing. Her avoidance to any form of music was disruptive as anxiety grew whenever she was exposed. For a decade, the Happy Birthday song has been a struggle and creates internal anxiety for Allie. Once at a friends birthday party she ran out of a room while her peers were singing it. Other times she would cover her ears during the tune.
Music Therapy was the answer. A board-certified Music Therapist comes into our home weekly and provides hands-on musical experiences. Fun instruments are woven into lessons such as egg shakers, jingle bells, tambourines, the guitar and our own piano. The interventions are designed to promote wellness, manage stress, enhance memory and improve communication.
Ms. Shelby, Allie's talented Music Therapist, teaches her how to be in control of the music by creating and writing the craft. After three years of sessions, Allie's musical idiosyncrasies are manageable. She now enjoys listening to music in the car and even has her own playlists stored on an iPod which calms her during noisy or chaotic times. The Happy Birthday song issue is a work in progress and making great strides. I don’t expect a quick fix after so many years of avoiding the tune. With an understanding therapist like Shelby, I am confident Allie will be successful.
Ms. Shelby is Allie's weekly Music Therapist.
These are just two therapies I highlighted, however, Allie is in more and over her lifetime she will continue various therapies. I am grateful that I have help! I can't do it all alone and I'm not ashamed of this fact. It's a big job. If I'm going to give my daughter the best life she can live, I will ask for all the help I can get. With special people in our lives like these talented therapists, I can achieve that goal for her and for us.
Thanks for reading!
Technically it is still a working manuscript. I am happy to report after 20 book title considerations I chose Don't Sing Happy Birthday.
This project is a huge undertaking, but I love it all, every step of the way!
Below is the book cover concept. Thank you for your support.
This epilepsy life never stops giving. Allie had a seizure at the waterpark over school break. She was waiting in a long line with her dad at the top of the highest waterslide. Quickly, Allie dropped into a 4 minute tonic clonic. She came out of it on her own to be carried down all those steps to a full hallway of paramedics, first responders and hotel staff. Calmly they took care of her and us. We packed up quickly and sadly drove home in the family minivan. Allie is recovering well after her cluster subsided, six seizures total this time around.
A painful arm and shoulder was a result of her fall. The next day she was convinced it was broke. Luckily the x-ray came back showing no broken bones. Advil and an old arm sling for a few days she should be back to playing basketball in no time!
Waterparks are a family favorite. Seizures, over the past decade has never stopped us from doing what we love. This one stopped us. We made it as positive as we could as most parents do in horrible situations. We move forward and plan for our next adventure. #hope #novemberepilepsyawrenessmonth #vns
Above: No broken bones here. The x-ray also shows her VNS implant. Pretty cool!
Joni Brown writes about her life raising her daughter that lives with PCDH-19 epilepsy, autism, anxiety and OCD.