Overcoming Obstacles and Meeting Milestones
Molly Dellinger-Wray is a mother to her son, Patrick, who has autism [1]. Molly shares her story of overcoming obstacles and meeting milestones on the way to Patrick’s graduation. She partnered with one of our contributors, Meme Hieneman, and together they have submitted a wonderful, informative perspective for you to read. Learn what she has to say…
The end of a long journey
Like thousands of other mothers, I planned to watch my son earn a college diploma this month. I was eager to sit in the audience like a member of every other family, eager to capture a photo of him in a cap and gown. For me, it would mark the end of a very long journey. I can’t begin to put a label to the jumbled feelings of pride, gratefulness, exhaustion, and other emotions this day conjures up for me. Thankfully, the graduate, like a victim of the tsetse fly, has little or no memory of the critical first years of his life.
Before starting my own family, I was a trained special educator with a focus on instruction of kids with severe disabilities and autism. After a few years of teaching, I used my professional skills to help families of children with difficult behaviors at home. I stopped working after having my first baby girl and, less than two years later, welcomed Patrick into our lives. Having had a talkative little girl, my concerns that Patrick wasn’t meeting some of the developmental milestones were dismissed by professionals and friends. They reminded me that it was my professional background raising antennae for a child who would be perfectly fine.
I no longer had the strength to battle it
By his first birthday, Patrick had endured more than ten ear infections, and by age three, he still wasn’t talking. The tactile sensation of clothing on his skin was so aversive to him that he ran around naked most of the time. As a stay-at-home mom with two children under the age of five, I no longer had the strength or energy to battle it. Patrick was quirky. Not aggressive, or naughty. Just different.
His diagnosis was autism. I would be lying if I said it wasn’t somewhat of a relief for me to finally have an answer regarding what was different about Patrick. But I couldn’t come to grips with the fact that my smiling, cuddly son was part of the one in seventy boys his age who were diagnosed with autism. Ironically, the doctor who diagnosed him informed me that Patrick’s behaviors would be problematic in the future, and that I should seek help from the behavioral intervention project from our local university—the same organization that employed me in my younger days. That was one of many emotional stomach punches that were going to come my way; I just didn’t know it yet. As a professional I knew a lot about what was best for my son. But as a stay-athome mom in sweatshirts and sneakers, I constantly second- guessed myself.
Traditional milestones were always worrisome
When I asked for my son to be included with typically developing children at our neighborhood school, and was asked, “Don’t you want what’s best for your son?” I had to stop and check myself. Was my insistence for the least restrictive environment that important? I can proudly say now that Patrick was the first student to receive special education inclusion services in both his preschool and elementary school… but not without a lot of sleepless nights on my part. Traditional milestones, like going to camp, school dances, and transitions were always worrisome. And the overriding questions of “would Patrick be happy and would this be the one thing that made a difference in determining a better future for Patrick?” Have always haunted us.
[2]
~Molly Dellinger-Wray
In hindsight, I wonder how difficult my professional knowledge, combined with my mother bear instincts, made Patrick’s school team feel about working with me. Was I a problem parent? I knew from the research how critical it was to create positive partnerships between families and professionals. I was always walking the tightrope between demanding the most for my son, and striving to maintain that positive relationship. I steeled myself before each educational meeting with the same mantra, “Don’t start to cry” I knew if my voice started to quiver just a little, my credibility as an advocate for Patrick would be dismissed. I rarely succeeded, and in my conversations with other mothers of special education students, no matter how strong they may seem, revealed the exact same sensations. Were these times truly the best circumstances for parents to be making decisions? Now I understand why parents ask for advocates to attend the meetings with them.
Some dismissed my concerns
Communicating with professionals proved challenging, but the most painful conversations were, well frankly, other parents. Some dismissed my concerns (‘Nuthin’ in the world wrong with that boy!”), while others offered condescending advice (“Maybe if you tried reading aloud to Patrick more.”). To this day, I have not met another parent who has not struggled with this judgment and irritating, but well-meaning, advice. And the wounds run deep.
Equally memorable, however, are the wonderful things. I have a deep and profound gratitude to so many of the professionals who taught Patrick, and urged me to have high expectations for him. Their words were a lifeline that pulled me out of a vortex of paperwork focusing on deficits, poor test scores, and failure.
[3]
Like so many children, Patrick’s life experiences surpassed many of the expectations that we were given in his early years. We exposed him to as many cultural, athletic, academic, and travel opportunities as possible. Now, as a young adult, Patrick is helpful and gets along well with others. He started a job bagging groceries at age 16, and has always felt more comfortable working than socializing.
So close, but not so close
A few days before his college graduation, Patrick called me to say that he would not graduate. He had all of the coursework and passing grades needed, but he came up short on the required extracurricular activities. The college would not award him a degree until the requirements are completed. Patrick cried. I cried. We all thought we were closing the chapter on school life, but, like so many things, it will take a bit longer to complete.
When Patrick finally does walk across the stage to accept that diploma, I know the tears will be flowing. And I will say a silent prayer of gratitude to the kind and creative educators and tutors, the skilled therapists, the patient college professors, the devoted scout leaders, loving camp counselors and babysitters, the generous neighborhood moms, and of course, to Patrick, who overcame so many obstacles that he doesn’t even remember.
[4]
Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.
Overcoming Obstacles and Meeting Milestones: Photos Courtesy Molly Dellinger-Wray
Helpful Articles
- When Mom Crosses the Finish Line [5]
- Advocacy Tips for the Long Haul [6]
- Real Moms Share: Janice Fialka Shares about Her Thoughts on a “Dance That Matters” [7]
- Early Intervention: First Steps in the Right Direction [8]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [9]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [10]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [11]
- How to Get Free From Unrealistic Expectations of Motherhood [12]
- Father’s Perspective: Raising a Child with Special Needs [13]
- I Do Not like Being a Special Needs Parent and That’s OK [14]
- Being United, Pampering, and Taking Care of Ourselves [15]
- Coping with the Life You Never Imagined [16]
- Developing Your Own Network [17]
This post originally appeared on our July/August 2015 Magazine [18]