Autism Spectrum Disorder: A Mother’s Call to Action

Blog-Post-0426-Caption_v1It should have been a call forgotten without hesitation. The daycare director called my office to let me know my 18-month-old daughter, Lilly, had eaten sand on the playground. She just wanted to let me know. I mentioned the call to a coworker, and she acted like it wasn’t unusual at all. “Kids test out the world one bite at a time,” I recall her saying. Yet, I didn’t forget the call and probably never will. To me, that courtesy call represents the point in time when I knew my beautiful, funny, heaven-sent child was autistic. I can mark time based on that “call.”

Lilly soon ventured beyond playground sand, eating leaves, sticks, paper. One time, she ate a piece of curly ribbon that came with a gift bag. Our pediatrician had her tested for lead poisoning, iron and zinc deficiency, even ordered a tumor marker panel to rule out cancer, which can sometimes coincide with pica, a condition in which a person is compelled to eat non-food items.

The other signs of autism                                                                                        

I’d noticed some funny = weird quirks about her long before she ate sand that day. There was the odd crying she’d do at times. Completely inconsolable crying that we could not satisfy. I remember my younger sister, who was babysitting Lilly, calling me in the middle of the day to see if I’d come home. She’d tried everything, but Lilly wouldn’t stop crying. I rushed home from my grants office job and found both my sister and Lilly sitting on the floor, sobbing.

“If we can’t see a child with autism as capable, interesting and valuable, no amount of education or therapy we layer on top is going to matter.” – Ellen Notbohm

Sometimes when I held her, she’d feel rigid, her limbs going stiff. My husband joked and said she was “strong-arming him” when she didn’t want to be that close. That’s not to say she didn’t like to be held. Quite the contrary. She clung to me at times like I was a lifeline.

Lilly never crawled on her knees, preferring to scoot sitting upright. She wore holes in her tights and leggings from scooting, even wore a hole in the seat of her jeans. I was so glad when she started walking because although her scooting was effective, it generated stares in public.

My husband and I went about parenting, seeking answers to various oddities, throwing this treatment at her or that promising new therapy. We tried everything, every therapy: music, play, listening and vitamins. We took her to specialist after specialist – my secret hope was to disprove what everyone pretty much already knew. It was the Big A.

Autism awareness – today and everyday   

Lilly is now 16, and depending on the day, falls along the spectrum at about moderate-to-high functioning – whatever that means. Autism is a strange condition that I hope I never fully understand. In one instance, she’s completely lucid, and highly focused, trying to explain to me how to use the cable remote to get Netflix. The next she’s throwing her hairbrush at the dog and crying that she’ll never get married. My husband says some of it is purely being 16.

The education system has been an especially difficult process. It takes a special teacher to tap in to these kids and help them reach their potential. I like what writer and columnist Ellen Notbohm has said, “If we can’t see a child with autism as capable, interesting and valuable, no amount of education or therapy we layer on top is going to matter.”

Like most, we finally landed on Applied Behavior Analysis (ABA). Our ABA therapist is like family. She spends roughly five hours a week working with Lilly. Treatment has changed course over the years, going from play-based to school-focused, and treatment playing will soon include some job-skills training. Lilly wants to be a fashion designer but realizes she must learn to sew. This summer, she is volunteering at the SPCA where I’m trying to promote her love of animals – dogs especially. Dogs seemed to “get” her and are drawn to her.

When Autism Awareness Day rolls around each year, we kind of shrug and say its autism awareness day in our house every day.

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4 Comments. Leave new

Jayme Paul Smith
April 26, 2016 5:18 pm

My daughter Emily is a twin, and just like this mother, even though I am the Father, I had a suspicion, although no expert by any stretch of the imagination. I knew almost immediately that something was not quite right. As a baby, I would hold her sister Alyssa, and I would coo, and tell her she was a beautiful baby, and Alyssa would look at me with those pretty brown eyes and twist her mouth as if to say ‘who is that talking, and once, I believe she was about 3 months, she laughed so hard when I talked to her that I was on the floor laughing to. But when I held Emily and talked and cooed to her, she would roll her head around like she was looking for me, but not quite finding me. I heard all the commercials, no big smiles by a certain age, no talking by this age, but my wife and I were told, all kids develop at different times and ages. So, life being what it is and busy and hectic, I really didn’t think about it to much. And while Emily did continue to grow, and she crawled and eventually walked, there always seemed something ‘different’ about her. Now, she did not really start talking until she was about 5, but in her defense when we went anywhere, and they would ask her a question, Alyssa would always answer for her, and the doctors joked that ‘well she, her sister talks for her. But it was right around when she was to start school and my wife and I decided we were going to attempt to find out if it truly was Autism or could it be something else. Well, to make long story short, we were told by several doctors, mainly pediatricians, that Emily was ‘Mentally Challenged’. Which quite frankly means squat to me. But, it did get her put in Special Education and “Life Skills”, which sadly for Emily meant being given papers and crayons and told to sit over there and color to her hearts content. And this went on, until I went back Active Duty and got stationed in Ft Carson, Co. We got a very concerned call from a Special Education teacher one day saying that our daughter had been done a great disservice, and that in just a weeks time in her new school, and with a teacher who actually took the time to work with her, she was slowly learning how to write her name, learn and write the Alphabet, and much much more. Now just like Lilly, Emily is as high functioning as she can be, she can fix herself something to eat, usually cereal, or a sandwich, she can dress herself, and bathe herself…mostly, she has an issue really washing her hair, but mom helps out there. She is now 20 and one of the brightest, most wonderful people, you would ever want to know. But, I know she can never live completely on her own, she is way to trusting, and she just does not have the wits about her to sometimes know when danger is about. I would like to know if there is a doctor in the Colorado Springs, CO that may specialize in someone like Emily. My wife and are going to need to file for Guardianship, we have been told and we really need to have her fully tested, but no one here has ever been able to give us any information on a real true specialist in this area. We think she may be Autistic, but she possibly could be like Lilly or I have even read about some categories she fits in for Asperger syndrome. So if there is someone out there who may know of a specialist, please contact me.

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Howard Savin
April 26, 2016 7:12 pm

I believe that a former colleague, Dr. David Hatfield, practices in CO Springs. Also, my current colleague, Ginny Bobby, has provided us with a familiar, graphic and poignant account of the challenges of parenting an ASD child. She has my admiration and respect.

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Marge Ackermann
April 29, 2016 7:04 pm

Also sending my admiration and respect. I am a proud mom to an adult son with autism. Just this week, he had what we would all consider a routine procedure but had to given sedation resulting in many potential complications. As always , he approached the situation with incredible courage and resilience and taught all of us something in the process. We also met some new incredible professionals committed to assisting us on our journey.
As we continue to advocate for all of our children and those impacted with ASD, let’s remember that children become adults and continue to require our support, our best thinking, our research dollars, and our focus. Thanks for the original post and a reminder that every day is autism awareness day for some. Spread the word.

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Crista Brackley
April 30, 2016 3:38 am

Great article, thanks so much for sharing!

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