As a thirteen-year-old, I babysat for the little boy next door who started to exhibit some red flags for autism, and I witnessed his single mother embark on a journey to find help. An answer and a plan. Even then, I empathized with her.
My career goal has since been to become an expert who can educate parents about their child’s diagnosis of autism and guide them towards effective help so they do not have to desperately search on their own.
Being a parent of a child who has been diagnosed with autism certainly comes with its unique set of challenges. I relied on an expert, a parent who has gone through this process first-hand, to help me convey the experience of parenting a child on the autism spectrum to 1) foster understanding among people in the community and 2) offer some useful advice to parents in the same boat.
Part 1: A Mother’s Story
Lisa (*not her real name for confidentiality purposes) is an exceptionally strong person and mother. I admire her honesty and willingness to share her story in order to potentially help others.
Lisa always knew she wanted to be a mother. When she imagined being a mom, she looked forward to playing with her children, showing them new things, being affectionate with them, and “doing everyday things…but with love”.
Lisa had attended elementary school with her husband, and they started dating in high school. They were both family-oriented and married at ages twenty-one and twenty-two years old, hoping to have three children while they were young, planning to be done raising kids in their forties.
“Being a parent of a child who has been diagnosed with autism certainly comes with its unique set of challenges.”
Their first child was a fun baby, somewhat fussy, did not sleep or nurse particularly well, but became more content once he became more mobile around 10 months old. Lisa miscarried her second child but became pregnant again.
She gave birth to Ben (*not his real name for confidentiality purposes) who was a very easy baby who loved being held and enjoyed being snuggled against his mom in his carrier. Unlike his older sibling, he slept and nursed beautifully.
Lisa remembers how Ben would seek affection by putting his palm against her upper chest and neck, the area on top of her collarbone, by wedging his hand under her bra strap. She remembers that Ben laughed a lot and was very happy. He especially loved having books read to him.
Lisa explains that one day, she was reading Ben his favorite book, one with pictures of different faces, and he did not laugh like he normally did. Just three days later, he would not even look at the book.
That summer, Lisa recalls Ben jumping repeatedly on furniture at a friend’s house. She noticed Ben was uncharacteristically standing by the pool alone while other kids were swimming and playing. She recalls that Ben regressed rapidly over the course of a summer; the changes over those few months are conveyed vividly in pictures.
Ben went from having a 6-7 word vocabulary at 19-20 months old to not speaking. He would lead his parents by hand and pull them toward what he wanted instead of using eye contact or gestures and facial expressions.
Lisa googled these concerns and felt certain that Ben had autism. Her husband called the pediatrician who referred him for a diagnostic evaluation as well as early intervention therapies. The diagnostic evaluation came six months later, and this was even after being expedited by enrolling in a research study.
The therapy process also took several months to get started. When the diagnostic results were announced to Lisa, she thought, “Yes, I know.” For her, the evaluation and conclusion were formalities. She already knew.
Ben is now early-elementary age. When I asked if the diagnosis of autism changed the way Lisa approached her day to day life or her perception of Ben or others, she replied, “It changed everything…every single thing.” Off the top of her head, here are a few of those things…
- Safety – Lisa puts extra locks on doors, has a sleep monitor for Ben, and wakes up multiple times per night just to check that Ben is still in bed.
- Travel – Because travel is more difficult with Ben, she only sees her parents twice per year and does not see her grandparents.
- Routines – Lisa does her big weekly grocery trip alone while the kids are at school but takes the kids with her occasionally to get a short list of items. She knows she has to be quick, reward Ben with one item along the way, and pray that the check-out line does not take too long.
- Routes – Lisa is careful not to throw Ben off when driving since he picks up on deviations from the usual route.
For Lisa and her husband, Ben’s diagnosis of autism and associated recurrence risk for siblings meant that they opted to stop having children despite initially hoping to have three. They decided it would be best for their family to devote their care to their two boys.
Lisa is adamant that Ben has to get out in the community in order to learn how to be part of it. She believes that he has the basic human right to be happy in his community. But this is where she encounters some of her most difficult experiences as a mother.
Her husband handles hurtful comments or judgmental stares like a champ, not even acknowledging them. But Lisa often cannot help but cry.
Lisa, unfortunately, knows that the grocery store, along with other public places, is a prime spot to receive critical glances and offensive remarks from bystanders. On the one hand, she understands why people act this way.
“It changed everything [Ben’s autism]. Every single thing. Safety. Travel. Routines. Routes…”
Mom had never been around anyone with a disability growing up. None of her family members have a disability. The special needs students at her elementary school were in a completely different wing from the other students.
Unsolicited advice, especially generalizations as if all individuals with autism are the same, are unhelpful and defeating.
For example, Lisa heard several times that, “if he does not talk by age seven, he is not going to talk” or the common misperception, “you know, vaccines cause autism.” Judgmental comments about her parenting from strangers are infuriating.
For example, Lisa wanted to respond to, “he is too old to be doing that” as Ben was urinating on the ground at an outdoor park with, “at least he is wearing pants and hasn’t hit any other children!”
I asked if Ben’s diagnosis of autism affected her spiritually. I learned that Lisa is not fond of the saying, “God gave you a child with autism because He knew you could handle it,” as if God assigns burdens based on one’s ability to cope. Instead, she believes that “God brings you through the fire and nurtures you along the way.”
Lisa and her husband felt shut out by their church community because they could not accommodate Ben at their service, and thus they did not practice their religion for several years. They ended up joining a different church of a new denomination that has a sensory room for children with special needs where Ben is doing well.
When I asked Lisa about future hopes and plans, she replied that thinking about Ben’s future is often too stressful to consider. During a meltdown recently, Ben kicked and shattered the windshield of her car and was pulling mom’s hair.
She is concerned about his behavior and safety as he becomes older and bigger. She has questioned whether the family needs to plan for a safe room in the home and has pondered scenarios where it might be appropriate to involve the police.
However, Lisa clarifies, “I do not presume gloom and doom”. While she fully anticipates that Ben may live in their basement as an adult, she intends to ask for his opinion regarding different options of how to spend his time (ex: like a group home set-up versus other possibilities). She thinks his receptive language abilities will allow him to express his preferences.
Lisa’s father owns a small farm out of town, and the plan is for him to teach their family how to take over once he retires and once Ben’s older brother is through college. Lisa explains that the hands-on skills and repetitive nature of farming are conducive to Ben’s learning style and strengths.
This plan will allow Ben to develop employment skills and continue to support himself.
Finally, I asked Lisa what qualities or images come to mind now when she thinks about Ben. “The kid’s happy!” says Lisa. She visualizes how Ben wakes up each morning. He pulls covers over his head like a teenager at first then smiles as if he is simply happy to be alive. Ben is extremely loving and affectionate, and, as his therapists will attest to, is truly a “fun kid”. Lisa states, “you can have a lot of personality and never say a word!”
Part 2: First-Hand Tips for Parents of a Child with Autism
Find the Right Team of People to Help
Lisa said she and her husband had to find everything out themselves and felt that everything was a fight. “Help does not come to you.”
Ask professionals to recommend the best quality providers. Lisa emphasizes that it is not necessary to be friends with your child’s therapists. She encourages parents who think they need to go a different direction with their child’s therapy to “cut the loss and find what’s best for your child.”
Develop a Financial Game Plan
Cost of treatments has been the most significant source of stress for Lisa and her husband. When I asked Lisa if there were any major turning points for Ben and their family, she said that when her husband got a new job with insurance coverage that included applied behavior analysis (ABA) for 30 hours per week, it was “life-changing”.
“Help does not come to you. Ask professionals to recommend the best quality providers.”
She expresses frustration that clinicians often tell parents about all the interventions recommended for a child with autism without really counseling the family about how much this will cost! She recommends that parents research costs and seek professional advice to set realistic expectations about money!
Take Care of Yourself
Early on during this journey, Lisa read a book that warned mothers of children with autism that if they had not started an antidepressant medication yet, they will eventually. Lisa thought, “no way…not me”.
One day, Lisa was called to pick Ben up from school. When she arrived, he was curled in a ball on the ground crying, and school personnel said he had been like that for two hours. Ben clung to Lisa as she arrived. Lisa’s heart was racing, and she felt panicked. She called her sister who recommended seeing a medical provider about her emotions.
Her gynecologist now prescribes her medication that helps significantly with her ability to cope. The anxiety can be overwhelming. Lisa says parents don’t often talk about this aspect, but it is very real. For Lisa, other ways to stay sustained include prepping meals in advance to eat a healthy diet, working out, and spending time outside in the garden or reading.
Take Care of Each Other
Lisa and her husband have a pact that when one is really struggling, the other steps up to the plate. Plain and simple.
Keep Date Nights Sacred
She urges other couples to schedule dates religiously, “like therapy appointments!” She and her husband have found creative ways to spend time together, like taking a half day off work or meeting for lunch while the kids are at school.
Spend Intentional Time With Neuro-Typical Siblings
Lisa has witnessed that having a sibling with autism can be isolating and heavy (emotionally). Ben’s older brother has already asked if he will be responsible for Ben once parents are gone. Lisa and her husband have been intentional about keeping Ben’s older brother active in social activities.
They also take him on dates (to the zoo, out to breakfast, etc.) to spend one-on-one time with him. He even takes a two-week trip alone to visit his grandparents each summer as a needed break. They emphasize to him that it is okay to voice feelings. They value open communication.
Lisa recommends that parents educate themselves about the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). “Don’t wait until they are close to going to kindergarten before you try to understand an IEP meeting.” (IEP stands for “individualized education program”.)
Check out wrightslaw.com for more information. Many cities offer school advocacy workshops and training programs to empower parents to make decisions in the best interest of their child.
Have a Sense of Humor
Lisa admits that Ben had something brown on his face once, and she and her husband joked, “poop or chocolate?”. She says, “when your child is smearing feces all over the walls of your house, you can either laugh or cry about it.” She has done both!
Do Not Underestimate Alternative Modalities
Although there is not much research to support its effectiveness in autism, Ben really enjoyed music therapy. His mood was so happy, and he participated wholeheartedly by singing and dancing with peers. There is something to be said about just allowing a kid to be a kid and not focusing on interventions constantly.
I asked Lisa about a support that she feels is needed in the community for parents of kids with autism. She paused then answered simply, “a gym”.
Ben’s family used to go to a cemetery just to let Ben run free for a while without fear for his safety or criticism from others. (Lisa joked about being criticized now that I’m writing about it and wanted me to reassure the readers that she thanked the buried at the grave sites for their hospitality).
There are very few confined but fun areas for older and bigger children with autism to run around and play without being confronted by people who may not understand. Parents, do not be afraid to think outside the box.
Caitlin is launching an ongoing FREE autism support group for parents and caregivers of any age. When? 6-7pm the 1st Tuesday of every month starting in Sept. 2017. Where? 5409 Maryland Way, Suite 202, Brentwood, TN 37027.
It’s absolutely FREE! No registration needed. No childcare provided. Email [email protected] for more information!