What do you do when life doesn’t follow the script you imagined when you first held your newborn in your arms? What happens when there are no easy answers to questions about your child’s developmental and behavioral progress – when even medical professionals can’t offer a simple diagnosis and solution?
For the Lundquists, their family’s journey into the world of special needs started early. Their firstborn son, Kyle, was 2 years old when their daughter, Megan, came into the world with her own agenda. Katie Lundquist, a mother whose children’s special needs include autism spectrum disorder, Type 1 diabetes, auditory processing disorder, Hashimoto’s disease, ADHD, celiac disease and dyslexia, remembers those early days with her eldest daughter.
“Megan was … different from day one,” Katie says. “She suffered from severe colic, hardly ever slept, would spend lots of time playing quietly by herself and not interacting with others as much as Kyle had.
“We thought at first it was just personality differences. When she was around 2 years old, she started self-harming when she was angry or frustrated – usually banging her head against the wall hard. Telling her ‘no,’ taking something away or giving a time out would often result in screaming fits that lasted anywhere from 45 minutes to two hours. Loud noises bothered her. Crowds overwhelmed her. She was nearly impossible to keep in clothes.”
Search for the Correct Diagnosis
Nowadays, with several more kids added to the family and 14 years of experience since receiving that first diagnosis, Katie can say with confidence that the challenges she faced with Megan were the result of an autism spectrum disorder that went undiagnosed for years.
“By the time we got Megan diagnosed, she was 8. It dawned on us slowly around this time that our firstborn, Kyle, was also on the spectrum. We just hadn’t really noticed because boys and girls generally present differently, and he wasn’t as severe.”
Unfortunately, as often occurs with autism spectrum disorders and other special needs, getting a diagnosis – more importantly, the correct diagnosis – can be a challenge. After being told Megan seemed like a typical kid, the Lundquists next received a misdiagnosis of Attention Deficit Hyperactive Disorder. The family was referred to a counselor who specialized in ADD/ADHD, but that therapy proved to be detrimental for Megan.
Katie and her husband, Mark, continued to search for the right diagnosis and treatment.
“It took me a long time to get anyone to believe me,” Katie says. “At the time, there was still a lot of misunderstanding [about autism]. We were told repeatedly that there was nothing wrong that some stiffer consequences wouldn’t cure. We were assured that the lack was in our parenting skills.”
Like many areas of medicine, diagnosing and treating the full spectrum of children with special needs is an ever-changing field. Fourteen years ago, reliable information about autism was much harder to come by, but Katie was determined to learn everything she could as she sought ways to help her children – beginning with Kyle and Megan, and continuing as the Lundquists added more children to their family.
Raising kids with a variety of special needs is certainly challenging, yet Katie has found ways to work with each of her children. The internet, in particular, has made it easier to find information on early signs and symptoms.
“I have learned to be a student of each of my kids. The trouble with autism – OK, one trouble among many – is that it is never exactly the same in any two people. That means what bothers one is fine for another, and what worked with parenting one won’t necessarily work with any of the others. There is very little down time.”
Exhaustion, Frustration and Faith
While there are many days of exhaustion and frustration, the Lundquists have adopted some strategies to help keep them going.
“Mark and I take turns getting time away,” Katie says. “Even an hour or two can help! We also try to do lots of one-on-one ‘dates’ with the kids to help build relationships.
“We also have to remember to find time for those little touches throughout the day – a quick kiss goodbye, a 30-second hug, holding hands on the couch … anything to touch base and not get overwhelmed with all we have to contend with. I also still spend a large bit of time reading and researching – new therapies, techniques and diets.”
Through it all – from conflicts at church, receiving stares in stores for their “uncontrollable” kids, and being told their parenting just wasn’t good enough – their faith has sustained them.
“Honestly, we would be completely lost without God. Our strength comes from the knowledge that He gave us these specific kids so we will be the best parents for them, even with all our mistakes.”
As for Megan, the profoundly dyslexic, high-functioning, autistic wild-child who banged her head against the wall when she was angry and had earsplitting meltdowns?
Today, Katie says, Megan is “an amazing, godly, service-minded young adult who has a scholarship named after her with a nationwide scouting organization and is working toward owning her own business in the next five to 10 years.”
Dawn Vargo is a freelance writer, wife and mother of two young children, one of whom was born with a rare, congenital birth defect.