Journey for a Milwaukee family with a son with autism
River Hills mother, Christina Crimmins, talks about finding out her son James, was autistic. James has 40-hour per week therapy sessions geared toward teaching him how to communicate and socialize. CT Kruger/Now News Group
Three-year-old James Crimmins lives in River Hills with his mom, Christina, dad, Curt, and little sister, Lily.
He loves playing with his toy cars and running around the house.
He enjoys going for walks around the neighborhood and exploring his backyard.
He’s affectionate with his baby sister.
And he has autism.
A mother’s intuition
At James’ 18-month appointment with his doctor, Christina Crimmins approached her pediatrician with some concerns. She wondered whether James might have autism.
She remembers, “He wasn’t really saying much, just ‘Mama’ and ‘Dada,’ and he had some tendencies like he was super interested in rhyme. He was fascinated with parallel lines and the way the wheels on his toy cars worked. At first, I thought it was adorable. He was so smart. I had never seen a child focus so much. But there were some red flags.”
However, the pediatrician didn’t agree with Christina. She pointed out that children develop at different rates and James didn’t present as a stereotypical child with autism because he made eye contact and was very sociable.
Christina tried to take the doctor’s reassurances to heart. Many of the people around Christina weren’t concerned because James had been born seven weeks early, and as a “preemie,” wasn’t expected to meet milestones at the same time as other babies.
“At first, I thought it was adorable. He was so smart. I had never seen a child focus so much. But there were some red flags.”
Christina Crimmins on her son, James
Christina also didn’t want to overreact.
“I didn’t want to go crazy and Google everything, and my husband, Curt, is older than I am and has children from a previous marriage who are grown, and I was a first-time mom,” Christina said. “We didn’t want my concerns to get out of control or for me to get paranoid.”
But Christina couldn’t dismiss those concerns.
Because he was born prematurely, James qualified for services through the Wisconsin Birth-to-3 Program, which includes speech therapy. A few weeks after the pediatrician tried to reassure Christina, James’ speech therapist, Caryn Wakefield, approached her with her own concerns.
Although Christina remembers Wakefield asking very carefully if she had noticed certain behaviors in James, Christina was quick to assure the therapist that she didn’t have to dance around the topic with her.
“I asked her if she was asking me these questions because she thought James might be on the (autism) spectrum,” Christina says. “When she said yes, I was just like, ‘Thank you so much for validating me!’ “
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Dealing with denial
The reason Christina felt so relieved at the possibility of an autism diagnosis was that it would allow her to take the next step: Begin advocating for her son so he could get the help he needed.
Christina suddenly felt like people were in her corner, and that they were more willing to accept that something was going on with James.
“Curt was always like, ‘Let’s be very clinical about this,’ ” Christina said. “I mean, he’s a surgeon, so he’s very scientific. Once the speech therapist suggested a problem, that’s when it became a professional concern. It wasn’t just our love for our child making us notice things. Someone separate from ourselves bringing up concerns helped him see that we needed to look at this a little more closely.”
Curt vividly remembers the moment he realized that James had autism.
“James’ life isn’t about me and my expectations of him. It’s about him and his expectations and aspirations for his own life.”
Christina Crimmins on realizing her expectations for James would change
“Christina called me at work to tell me that she thought James was definitely on the autism spectrum somewhere,” Curt said. “I really didn’t know much about autism. I googled it, and in minutes was also certain that James was autistic. It was a terrible couple of days emotionally.”
Although it’s common to go through some denial about a loved one’s diagnosis, Christina came to understand that that she needed to rescript her expectations.
“I went into parenthood with an idea of how James’ life would unfold: my expectations, specific hopes and dreams of who he would become and what he would do,” she says. “In reality, James’ life isn’t about me and my expectations of him. It’s about him and his expectations and aspirations for his own life.”
Both Christina and Curt initially worried that James wouldn’t be able to do what he wanted when he grew up or that he wouldn’t be happy. Christina now sees that as misplaced. “I mean, look at him. He’s happy now!”
A new normal
James has been in therapy for more than a year and a half, and Christina is encouraged that she sees progress. It’s a lot of therapy, though. Part of coming to terms with James’ autism diagnosis was defining a new normal in their family, and that normal integrates hours of in-home therapy every day.
Therapists from Autism Intervention Milwaukee come to the Crimmins home for 33 hours per week to work with James under the Applied Behavioral Analysis (ABA) model. ABA is the most common treatment for children with autism and is provided through families’ health insurance or Medicaid.
James struggles with using language to communicate his wants and needs, as well as with playing with his toys and peers in an age-appropriate manner.
The multiple daily therapy sessions are geared toward teaching James how to communicate and socialize so that he’ll be able to enter school in a year.
For Christina, who is a stay-at-home mom, her everyday life is all about integrating a full-time schedule of therapy into a more typical reality of living with her two small children.
Christina is grateful to have the therapists to lean on during the day, as well as support groups and scheduled outings such as a weekly play date at St. Francis Children’s Center.
But just the fact that so much of the therapy is in-home is isolating, and it can be difficult that Christina can’t just do what other stay-at-home moms do with their kids, like going to the park or meeting up at the children’s museum or out for lunch.
James’ sister, Lily, is 18-months-old and her life revolves around her brother’s needs as well. In fact, James’ first day of therapy was the same day Curt and Christina brought Lily home from the hospital after she was born.
At this point in James’ development, the family can’t live the life of a “normal” couple with young children because it’s just too important to keep up a consistent therapy schedule.
“The idea is you want to keep them actively engaged for as much of the day as possible,” said Aimee Kohn, the administrator of clinical services at Autism Intervention Milwaukee. “We need to be there to model language and play for as many waking hours as possible.”
An uncertain future
Kohn said that, while all children progress using the ABA model, it’s impossible to know how much progress each individual child will make and how much support will be necessary in the future.
“We have a tremendous responsibility to do what it takes to help him develop and get ready for school and life, in general.”
Curt Crimmins on raising James
“One kid I worked with is now a graduate student at Alverno, studying for a degree in art therapy,” Kohn recalled. “But then her sister, who is also on the spectrum, got the exact same amount of therapy. And, although she lives on her own now, she has care workers with her 24/7 to do things like make sure she’s taking a shower and make her meals. So there’s a range of outcomes, and we still don’t know what accounts for the differences.”
When James was first diagnosed with autism, both Christina and Curt had to work through their emotions in order to accept the expectations they had for their son were unlikely to come to fruition — a process that is very familiar to parents of all children with special needs, and indeed all parents.
Christina points out all parents have to eventually accept that their kids’ lives are not their lives. Whether that’s accepting the child is choosing a different career path than the parent would want or has a different sexual orientation or chooses a spouse the parent doesn’t approve of, it’s a journey every parent goes on.
Christina sees it as a bit of a silver lining to James’ diagnosis that she and Curt have come to this realization long before many other parents do.
Their goal isn’t to change him, but to give him every resource they can to help him thrive, a job that is definitely different than what they thought they were getting into when James was born, but in many ways very similar to every parent’s job.
Curt says raising James is “a little more work perhaps, a little more stressful, but in the end, very much the same. We have a tremendous responsibility to do what it takes to help him develop and get ready for school and life, in general. It’s really not that hard when you love him to death like Christina and I do.”
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