One Mom’s Lessons from Raising Three Children on the Spectrum
Jeannie married and had her first child by age 18. Carlos was a quiet, sweet natured baby. The year was 1998. For this first time parent, the word autism didn’t mean much. Unfortunately, it didn’t mean much to Carlos’s teachers or pediatrician either.
As an only child for the first six years of his life, Carlos interacted primarily with adults. He didn’t seem to have the need to play with peers. Everyone thought he was “so smart and mature,” yet he struggled with paying attention and asking for what he needed. Others told Jeannie this was just his personality — that he was, after all, a boy, and that he just wasn’t applying himself.
Six years later, Caitlyn was born, and five years after that came Jeannie’s second son, Thomas. “When Thomas was born, I definitely knew he was different. Everything was delayed. He didn’t babble, he didn’t crawl until late, and then he really just dragged his body along.
Jeannie started reading about child development and told her pediatrician that Thomas had many atypical behaviors. Her pediatrician told her to “wait until he is two years old,” and she heard echoes of her experience with Carlos when the doctor said Thomas was “just being a boy.” But Jeannie realized not all boys acted like her sons, saying, “My nephews weren’t like them.”
While I was chatting with Jeannie, she began to softly cry at this point. “I carry a lot of guilt for not noticing Carlos’s struggles earlier. He struggled so much. He was intelligent, but he struggled. It wasn’t until he was 16 that he finally got diagnosed and got on a 504 plan. I missed so much.”
Hearing the same dismissals of her concerns with her second son, Jeannie this time followed her gut and sought an evaluation. Thomas was diagnosed with autism.
Two years later, Jeannie had her second daughter, Sophie, bringing her brood to four children who spanned thirteen years. She had divorced between the years that Caitlyn and Thomas were born, and she separated from the father of her last two children two years ago. While her ex-husband has moved out of state, the father of Thomas and Sophie continues to help out, and they have a good co-parenting relationship. The children stay with him on the weekends, and he comes by a couple of days a week to help with showering and other chores.
Sophie was born via a vacuum-assisted delivery, and she was left with a calcified bump on her head. She was referred to a neurologist, who along with Jeannie, had concerns about her development. By the age of only 18 months, Sophie was receiving services. She was only 22 months old when she, too, was given a diagnosis of autism.
Jeannie had stayed with the same pediatrician through the years, but his response to Sophie’s diagnosis and treatment were the last straw. She recalls him saying, “Autism is autism. It’s not like cancer. Early intervention or not, it won’t make a difference. You have it, or you don’t.” That was the last appointment with that pediatrician.
I asked Jeannie what she wishes she had known earlier. She said she wished she’d known you don’t have to wait for a doctor to initiate an evaluation. She advises parents to get the ball rolling when they “feel it in their gut that something isn’t right.” Jeannie believes she and many others have wasted time “guessing” and advocates finding help as soon as possible. “Pick up the phone and start calling all the resources you can find.”
Jeannie also warns, though, that not all resources are equal, and that parents have to be vigilant of even well-known therapy centers. She’s unfortunately had one experience that brought that lesson home.
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Thomas received Applied Behavior Analysis (ABA) through a large provider and Jeannie was satisfied with the services. Later Sophie enrolled with the same organization. But Thomas and Sophie are very different children. Illustrating the common saying that “if you’ve seen one child with autism, you’ve seen one child with autism,” Sophie, the highest functioning of all of Jeannie’s children with autism (Kaitlyn is not on the spectrum), is the one who has the most frequent and aggressive meltdowns.
One morning Sophie had a particularly violent meltdown, grabbed a knife, and starting hitting Thomas. Jeannie has learned to remove herself from Sophie during these times, as long as someone else is there for safety. That day a new ABA therapist was present, so Jeannie took Thomas and went upstairs. She heard Sophie screaming for a while, and then there was complete silence. When she went downstairs, the therapist said everything was fine now, and she left soon afterward.
Later Sophie told her mother that the therapist had slapped her on the stomach, and raised her nightgown to show her. Jeannie saw an adult-sized handprint. She immediately took a photo, recorded her conversation with Sophie on her smartphone, called the supervisor, and also made a police report. The ABA therapist denied everything, and nothing has come from Jeannie’s complaints. She says that the therapist continues to work at the center. Jeannie said she didn’t want to “be negative” but that she wanted to tell this part of her story because it is a reality that needs to be recognized. I agree: unfortunately, we know that children with special needs, who often are expected to stay silent about mistreatment, suffer higher abuse rates.
The sad aftermath of a negative experience with a caregiver is that a huge part of a child’s routine changes if they are removed from a familiar program and familiar therapists. Sophie wanted to stay in the same program, where her friends were, and where she liked the rest of the staff. But Jeannie says that she couldn’t guarantee that the same worker might not one day be again assigned to Sophie, perhaps substituting for an ill colleague.
Jeannie is also an advocate of switching schools when necessary. At his first school, Thomas didn’t like going, showed lots of repetitive behaviors, and banged his head on the tile floor. When she learned that this school used restraints, she removed him. Thomas loves his new school, and Jeannie thinks his teacher and therapist there are incredible. His behavior has improved dramatically, and he’s now using the restrooms at school by himself for the first time ever.
Jeannie advises parents to observe how schools and providers view their children and to be proactive if their children receive anything less than dignity and respect. “Some people, unfortunately, are just doing their job – they want complete compliance from our children, who are often not able to give it,” she says. On the other hand, she also believes that “Others have so much empathy. They genuinely love our kids”.
In addition to staying vigilant about her children’s care, Jeannie has also learned to be equally mindful of her own well being. She stresses that it’s really important for all caretakers to have some down time to just relax so they can gather their strength and recharge. “You want to be able to enjoy the time you spend with your kids. I used to spend all day cleaning the house and catching up when they were at school. Now I know it’s important to pace myself so that I’m really present when they get home.”
It’s clear that Jeannie’s kids inspire her every day. “They have such determination,” she says. “You can have these challenges and still overcome. Appreciate all the little things. Never give up on them, and don’t give up on yourself. Don’t focus on limitations, look at strengths. It’s not always going to be easy, but it will be worth it. Some days I feel like we’re golden — walking on tippy toes! And then we get thrown a curve ball, and we’re right back down. We still have work to do. And that’s okay.”
Jeannie and Dr. Moore connected on a LinkedIn’s group Autism Researcher’s Link when Jeannie replied to an article Debra had posted on the genetics of autism.
This article was featured in Issue 76 – Raising A Child with Autism