My Parenting Journey…the Power of Parent Support!

My Parenting Journey…the Power of Parent Support

My son Logan was born in Flagstaff, Arizona in 2003 and our lives seemed to be the same as all new families.  Around 6 months old during a well-baby visit, the doctor started to become concerned Logan wasn’t forming new words like “ma” or “da”.  We were assured this was fine and boys often have speech delays.  At nine months, Logan was diagnosed with plagiocephaly (flat head) and torticollis (shortening of the neck muscle).  Throughout this time period, Logan failed to meet other milestones.  He sat up on time, but never crawled.  He instead would roll from place to place.  We were aware, but unconcerned about things like him not ever crying or sleeping while vacuuming.  We just thought he was “a good baby”.  When Logan failed to walk around 12 months, our physical therapy shifted to learning to walk.  Additionally, we started Early Intervention to work with a speech therapist to facilitate talking.

Logan began walking at 17 months and we were once again assured this was the outer most limits of “normal”.  However, he still wasn’t speaking.  He could babble and say one word, “mom”.  We were sent to Phoenix children’s hospital for a sedated ABR (auditory brainstem response).  The doctor came out and told me Logan was deaf!  He had bilateral hearing loss between 55-60 db.  I was shocked.  Not because of the diagnosis, but because everyone seemed to miss it!!  They reassured us he was fine, just delayed.  How could things have changed so much after one test?

During this same time, I had also seen ‘quirky’ behaviors from Logan such as holding his hand up to the light and humming.  He was also fascinated with ceiling fans.  He still didn’t play with toys but preferred pots and pans.  It was different but not so unusual.  In 2006, Logan began preschool here in Colorado at age 3, and within two months we were asked permission to test Logan.  I weren’t told what for, but rather that it was standard practice and all the kids were being tested.  In my mind I knew this wasn’t true.  I can still vividly recall a conversation with my sister in her kitchen when I said, “If he’s diagnosed with autism it will make me sad.  Sad for all the things he’ll miss out on, won’t be able to do!”  By winter break, I was called in and given the diagnosis of autism too.  Logan was also diagnosed with PICA (eating non-food items) and still wasn’t even close to being toilet trained.  I didn’t really react.  I don’t really even remember crying.  I was numb.  I felt so alone. 

Logan’s behaviors also began to worsen during the spring semester and he wasn’t learning sign language.  After a heated discussion with the State Deaf School, we were told they ‘could not meet his academic needs’ and we would need to go to public school.  He was passed from one program to another, school to school, with the school district doing little to support him.  Every time he was required to move to another program, I was told, “We cannot meet his educational needs.”  Logan ended up attending 7 different schools in 4 years! I was frustrated, angry, sad, confused.  I just wanted someone to help my son!

Logan had difficulty adjusting to yet another school when we moved to Denver.  His behaviors intensified.  He would bang his head on the wall, throw things, topple over desks and hit other students.  Another vivid memory for me is a day I came to pick him up.  His para brought him out and both her arms were covered with bandages.  I didn’t have to ask who had done it to her.  She looked at me and tried to reassure me she was ok.  All I could do is apologize.  When I got in the car I began to cry.  I cried for her and I cried for myself.  Why was my son the one no one could handle? 

It wasn’t just at school that his behaviors were worsening.  Logan often destroyed furniture, threw things until they broke or even attacked his sister and myself.  In November 2012, I had to do what I never thought I’d do, and Logan started medication to chemically restrain him.

At age 13, Logan is a different boy now.  He’s now at a 90-100 db hearing loss for unknown reasons.  He will now wear hearing aids, but I’m told if he loses more hearing, they’ll be pointless.  All his genetic testing came back negative.  Doctors still have no answer as to why he is the way he is. But, he’s older, matured and is behaviorally stable the majority of the time.  I still have broken furniture and holes in my walls.  I’m not looking at life through rose colored glasses.  But, we’re happy.  We have great days, we have horrible days.  We all love to travel and do so in the car.  I haven’t braved the airport yet!  I can only finish by saying, our lives have been challenging.  Sometimes it feels like it takes so much strength to meet the next day.

I joined Parent to Parent as a way to connect with others who were “like me”.  Knowing others faced similar challenges helped me cope with my own life circumstances.  I have few natural supports since my family has largely been incapable of handling him during his behavioral tantrums.  As a single parent, I find it difficult to “take care of myself” when there isn’t a partner to pick up the slack.

Being a part of the P2P Advisory Board allows me to be further involved in the community and meet others in different ways such as our “Get to know you community neighbors” forums we’ve done across a large part of Colorado.  I feel blessed to be a part of such an amazing group of people, including the staff and families of P2P.

Shannon Secrest was born in Wyoming, but traveled the globe with her family at an early age. Her family travels took them to North Africa for 4 years and to South America for 2 years. During their tenure abroad, the family trekked extensively throughout 24 countries, being captivated by each unique people, culture, and language. In her little bit of free time, Shannon enjoys coffee with friends, short trips by car for a “stay-cation”, reading, and listening to all different kinds of music. Shannon is a single parent of two amazing kids, ages 13 and 10. She says, “It’s my son and his multiple diagnoses and needs which brought me to the Intellectual/Developmentally Delayed community. I sit on numerous State committees and boards. I am an avid mentor, trainer, and advocate. My current focus is Health Policy, specifically centering on Medicaid, State Waivers and Home Health Care issues. My passion is systems advocacy surrounding health equity and social justice issues, and ensuring families have equal and appropriate access to services across all state systems.”

Editor’s Note:  Every year in December, we promote our giving campaign called “Fueling the Journey”   We often talk about our parenting journeys, whether we are just starting out with a new diagnosis or whether we are veterans dealing with new joys and challenges.  At P2P-CO we believe in the power of connecting parents to other parents who understand.  We know that this type of parent support at P2P is readily available (we are here 24/7/365!) and can be a lifeline for many of our families.  Not only that, it lasts across the lifespan…we now have P2P members who have been a part of our group for nearly 20 years!

YOU can support parents on their journey of parenting a son or daughter with a disability or special health care need and help Fuel the Journey!  A small weekly, monthly or quarterly donation adds up to ongoing support for over 3800 families across Colorado!  www.coloradogives.org/P2PCO