There are few “jobs” in this world as difficult — and as rewarding — as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes.

Through this new series, “Special Edition”, I’m going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something — an extra chromosome, perhaps, or an extra diagnosis; maybe it’s an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone.

Tell us about you and your family.

My husband Brett and I live in Lake Linganore, New Market, Maryland, with our five children: Clayton 14, Ava 12, Lyla Rose 10, Allen 6 and Pierce 4. Brett is a mechanical engineer and I have been in the field of child psychology and autism for 18 years.

Who are you specifically talking about today?

Our daughter 10-year-old daughter Lyla Rose.

Tell us about them!

Lyla Rose is in 4th grade. She loves art, animals and reading! She has been strong-willed from the day she has been born. Lyla Rose is incredibly creative and has a hilarious sense of humor.

What diagnosis(es) do/does your loved one have? Would you say this is a visible or “invisible” diagnosis and do you think that makes things more difficult in any way?

Lyla Rose was diagnosed with Autism Spectrum Disorder on May 19th, 2016. She was 7 years old. When Lyla Rose was 12 months old, she started memorizing and repeating the books we were reading to her. I was amazed and figured she would be an early talker because she was the third child. At the age of 2 she was fascinated by letters and books. However, at this time she started to become withdrawn, fixated on holding toy animals and started to have tantrums.

At the time, I felt like something was different but based on my experience in the field of Autism, she was not fitting into the classic diagnostic criteria. She made eye contact, was talking and was meeting all of her developmental criteria. I remember at the age of 3, I brought her to the pediatrician because she was toe walking. In hindsight, her passion for reading, fixation on holding toys and toe-walking were all subtle signs on Autism Spectrum Disorder.

Preschool through first grade were very challenging. Lyla Rose had a difficult time making friends, following classroom directions and would often shut down and refuse to speak at school.

Since our oldest son was already diagnosed with ADHD, I figured Lyla Rose must have it, too.

We brought her in to receive an ADHD evaluation and she left with an Autism diagnosis.

What was your initial reaction to this diagnosis? What was your greatest fear?

For us, having a diagnosis of Autism Spectrum Disorder was actually a relief. We had been so lost with how to manage Lyla Rose’s progress in school and at home, we finally felt like we had a plan of attack.

Besides Lyla Rose’s behavioral and social struggles, we noticed that she was very clumsy, had difficulty sitting at the table and eating with utensils.

After having her evaluated by an occupational therapist, we found out that she had low muscle tone and was several years behind her peers in her visual/motor skills.

How does this diagnosis affect everyday life for this child? What are their greatest struggles?

After Lyla Rose was diagnosed, we started in-home Applied Behavior Analysis, Occupational and Speech Therapy. She also qualified for an IEP which ensured she would get the support at school that she needed.

Currently, at the age of 10, Lyla Rose’s greatest struggles are sensory dysfunction, restricted eating/preferred foods and compliance.

She has come a long way but we are constantly working on these areas.

What do you think is the biggest misconception with your child’s diagnosis?

I think the BIGGEST misconception about Autism Spectrum Disorder, is that it is not “Rainman”.

There is a saying, “Once you have met one person with Autism, you have met ONE person with Autism”.

Autism is absolutely a spectrum. Each individual is uniquely gifted and wonderfully made. Even in the thick of our most difficult days, I choose to see the beauty in Autism. The gifts and abilities that an individual can have, are absolutely incredible.

I love this quote from one of my favorite books, Iris Grace by Arabella Carter-Johnson:

“Autism has a way of suddenly creeping up you when you least expect it, like a thief in the night, swallowing up something precious and stealing it away. The Unfairness of it all and the ever-ending questions about why or how it happened are exhausting. Some children regress, some lose language or have sudden sensory issues that are difficult to control, and some retreat into their own worlds, almost out of reach. Even when you have rescued your dear little one, its still there like an ever-present shadow and again without warning, it is back in a different form, overwhelming their senses with uncontrollable feelings and obsessions, Relentless but rewarding, the love for our children drives us on.”

Such an amazing book.

Does your child have any other siblings? How much do they know about his/her diagnosis? How, if at all, has it affected them? What impact do you think it will have on them longterm?

Lyla Rose has two older siblings and two younger brothers. Her older sister, Ava, is her best friend and biggest cheerleader. They have shared a bedroom up until a few months ago and have a VERY close relationship. Ava is extremely patient with her sister.

What does an average day look like for you and your child?

Mornings are the most difficult for us. Lyla Rose has never been a great sleeper so it takes a while to wake her up and get her ready for school. We have always had the same routine which makes things run a little smoother.

She is in school full day and then we have homework and other various activities in the evening.

What areas are the hardest — everyday functions, education, employment, behavior, etc — and why?

Currently, eating and clothing are the most difficult areas. Lyla Rose only eats a few foods and only wears a few different outfits.

How has your life/ your parenting changed because of this journey?

Autism has blessed my life. I see and appreciate life through a different lens. Parents with children with special needs just want to see their children happy and making progress. I do not sweat the small stuff but rather see successes.

Lyla Rose continues to read levels beyond her years. Her teacher called me to tell me that the work and effort she displays in class is incredible. We are so proud of her and can not wait to see what the future holds!

What is your greatest wish you have for your child?

I want Lyla Rose to be happy, confident, live independently and do what she is passionate about.

If people would like more information on this, where can they find it?

You can find a lot of information about Autism through Autism Speaks and other local social media pages.

Share whatever is on your heart right here, my friend.

Lyla Rose recently started therapeutic horseback riding at Gaits Of Hope in Ijamsville. She absolutely loves it and look forward to continuing!

Please note: We are not medical professionals or scientific experts. We are providing a human-based glimpse into daily life with certain diagnoses. For more information, please seek a professional affiliated with this condition.

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