It’s becoming more and more common to hear reports on the nightly news about autism, a neurological and biological disorder that typically affects children between the ages of 18 months and 5 years of age.
The additional news coverage shouldn’t be a surprise. According to a recent study by the U.S. Department of Health and Services, autism now affects one in 50 children.
As noted by Talk About Curing Autism (TACA), a national organization dedicated to providing information, resources, and support to families affected by autism, there can be many layers to the disorder. Autism affects each individual differently and at different levels of severity. Some people with autism are severely affected, cannot speak, require one-on-one care, and are never able to live independently. Others may have less severe symptoms, can communicate, and eventually acquire the skills needed to live on their own.
As April was Autism Awareness Month, three local families recently talked about their experiences with autism to highlight the impact that autism is having on people in the local community.
Bill and Kim Breeden and their two sons live on a hobby farm in Mayer.
The couple adopted their sons, Isaac, 8, and Wyatt, 6. Isaac’s birth parents are Vietnamese but he was a domestic adoptee from St. Paul. Wyatt was born in Vietnam but the boys are not biologically related. The Breedens adopted Isaac when he was about 10 months old. He had been born premature at 24 weeks.
“He received special education services since the very beginning,” said Kim, noting the services included occupational therapy (OT) and physical therapy (PT). “As a premie, they thought he would catch up, that was the presumption. Working with the school district, he wasn’t making the progress they expected to see.”
In addition to the school services, the Breedens were doing private OT and PT with Isaac through Children’s Hospital, which ultimately recommended that Isaac receive an assessment through Fraser, a non-profit organization that serves children and adults with special needs, including autism.
At the age of 2 and a half, Isaac was diagnosed with autism.
“I don’t think the autism diagnosis really shook us like it does other people,” Kim said. “Autism was just a word and in a lot of ways, it opened up a lot more services for him.”
“We knew Isaac — being a premie, working with the OT and PT for a couple of years … (the diagnosis) wasn’t a shock,” Bill said. “It gave a word to associate with his behaviors we were already familiar with.”
“One of the first things they tell you with autism is the importance of early intervention,” Kim said. “But they don’t tell you there are long waiting lists for those programs. We were lucky. We got into Holland Center, which does ABA, or applied behavioral analysis, and they work one-on-one with kids like Isaac.”
Isaac started at the Holland Center when he was 3. He continues to attend the center, which is located in Minnetonka. Technically, Isaac is home schooled but Kim drives him to the center throughout the week. Medical assistance from the state pays for Isaac to attend the Holland Center.
At first glance, Isaac’s autism would seem somewhat severe — Kim described his autism as lower functioning, nonverbal — and at the age of 8, Isaac still wears diapers, speaks in one word phrases, has a feeding tube, and needs constant supervision. However, the Breedens are pleased with the progress he has made.
“When he started at 3, he was completely nonverbal. He had a lot of behavioral problems and couldn’t handle transitions or change,” Kim recalled. “Now, he does have one to two word phrases that he communicates with and he also has quite a few sight words that he knows and he can type them to help him communicate. We’re very happy with his progress so far. We definitely hope there’s more to come.”
According to the Breedens, communication is among the toughest challenges associated with autism.
“It’s hard when we don’t know what he wants or needs,” Kim said.
“He will so intently try to tell you something,” Bill added. “You can tell when he really wants something and he knows you can get it for him. As he learns more words, it helps us help him more.”
“The social interaction is definitely a challenge — Isaac doesn’t often play with his brother,” Kim said. “There’s always safety issues. He’s a huge climber. We have to keep the doors locked. (If Isaac were to get outside by himself), he has no concept of things that are dangerous or how he would get back in the house.”
Another challenge is confronting the “Rain Man” stereotype, where an autistic individual is higher functioning and has an exceptional skill or focus.
“I think that was an older generational thing,” Bill said. “Now, most people are aware of someone with autism and they have a different understanding of what it really is.”
While autism can be challenging, being a parent to any child obviously creates many joys.
“He has a very easy-going personality,” Kim said. He’s a very happy child. He loves to laugh and he’s very loving. He loves to be around us and cuddle with us.”
“In the evening, Isaac and I cuddle until he falls asleep. It’s a great part of the day,” Bill said. “Isaac is who he is and we love him as he is. He has his own personality. Just as with any kid, you learn their personality, watch them grow, and hope they have a good future.”
The Breedens were happy to talk about autism for this article, to help spread awareness.
“The big thing I want people to know about autism is one in 50 kids now has autism,” said Kim, citing the study noted earlier. “I think this is really alarming and it concerns me that no one is really asking why.”
The cause of autism isn’t clear. Kim believes it is a combination of genetics, environment and vaccinations.
“It’s life altering but I think what happens when a family has an autistic child, they pull in,” Bill noted. “They have to do so much for that child. The community is much less aware of it than other more ‘out in the open’ disorders or diseases. It’s more prevalent than you think.”
Michael and Kristy Grannis and their children, Michaiah, 6, Tovin, 4, Kina, 2, and Eliana, 7 months old, live in Waconia. When Michaiah was in preschool, a reading teacher told the Grannises that their son exhibited echolalia, or repetitious speech patterns. After conducting research to learn more about echolalia, the Grannises learned that their son was exhibiting many of the signs associated with autism.
At the time, they were living in Pecatonica, Ill., but knew they were moving to Minnesota so they set up an appointment at Fraser. Six months later, Michaiah was diagnosed, just before his fourth birthday in fall 2010.
“He has a high-functioning form of autism, more so now than when he was initially diagnosed, as he has recovered quite a bit,” said Kristy, who said Michaiah had difficulty in interacting with other people.
“He wanted to but was unable to figure out how to do so,” she said. “He would use books and television shows to teach himself how to navigate in social situations. When he talked to people, he always used scripts that he’d memorized from books and TV shows. If the person responded in a different way than he expected, he tried a different script. That didn’t make sense to the other person, and they ended up dissatisfied on both sides.”
Michaiah also wanted things to always be the way he preferred for them to be.
“Michaiah always wanted his apples to be peeled, and if they weren’t peeled and sliced in the way he preferred, he would have a meltdown,” Kristy said. “If the wrong drink was put into the wrong cup, he would be upset. His speech was not clear to most people, although my husband and I could understand him.”
The Grannises approached Michaiah’s autism in different ways, one of which was working with a classical homeopath to help his body fully process and expel vaccine ingredients from his system. They also worked with a dietician to determine which foods he should stay away from.
“I had placed him on a gluten free/casein free diet and we’d seen some very positive results, but I wanted to know if there were any other things we should stay away from. It turned out that there were … about 30 of them!” Kristy said.
“We also found out that he had high levels of the trace mineral manganese, and that level was greatly affecting his brain function,” she added. “The No Harm Foundation (www.noharmfoundation.org) has done some fabulous research regarding this area, and they created a list of foods to eat and avoid. Since we started on this diet, we’ve seen amazing progress.”
Kristy said the hardest part is seeing other people’s expressions when her son makes a social faux pas.
“He loves everyone, so he hugs and kisses inappropriately at times,” she said, offering an apology to a woman shopping for produce at Mackenthun’s who recently received an unexpected hug from behind.
“It is difficult for me to see him trying so hard to play with and be friends with kids on the playground,” Kristy continued. “He tries, but they often don’t understand his speech or his interactions, and then they ignore him. It hurts to see him disappointed by his ‘friends.’ He doesn’t usually seem to mind as much as I do, but sometimes I can see how much it pains him to be continually rebuffed.
“It is also difficult for me to see close friends and family who love him but don’t really understand how to relate to him,” she said. “Sometimes they try, sometimes they don’t. Sometimes he tries to relate to them, sometimes he doesn’t. I appreciate that they love each other, but it’s hard to see such awkward interactions between those that we all love.”
Kristy said that Michaiah is improving with each and every month but it remains a difficult path.
“Perhaps the hardest part is the food,” she said. “Because he’s following a very specific diet, we have a difficult time eating out. We cannot eat most prepared foods. I cook everything at home, and I’ve had to do quite a bit of experimenting to find food to meet his needs. For the most part it’s okay, but it does become difficult when birthday parties, holidays, or other special events come around. He also would love to have a piece of candy every now and then, but I have yet to find any that meet his needs. So I make some every now and again, but it is exhausting to think about food all the time.”
The autism challenges aside, the Grannises feel blessed to have Michaiah as their son.
“He is so very sweet,” Kristy said. “He loves literally every person he sees; he is great with animals; he knows my computer better than I do; he’s a great big brother; and he knows his physical limits, and he’s fearless within them. He is my son, and I love him to the moon and back!”
When it comes to autism, Kristy said she wished other people would appreciate its complexities.
“It’s big. It’s mysterious. It’s scary to think about the future sometimes. But it’s also just about connecting to another human being. It may take more time, or be more difficult, but it is infinitely worth it to see a person’s soul. When you have to work harder to see that soul, it makes it even more precious when you connect.”
Greg and Stacy Brakefield and their children, Mackenzie, 10, and Josh, 9, live in New Germany. At the age of 4, Josh was diagnosed with autism, although his parents noticed signs of it when he was 2 and a half.
“We waited to have him diagnosed because our daughter Mackenzie is a non-verbal, cognitively impaired child from an anoxic brain injury when she was 4 months old,” Stacy explained.
“We assumed that Josh was just mimicking his sister so that is why he didn’t talk,” she continued. “Our pediatrician advised us to get him around some neuro-typical kids and see if that would draw him out. After 18 months of attending an in-home daycare and private speech sessions, we saw no change.”
It was at that time that the Brakefields had Josh formally diagnosed.
“When Josh wasn’t talking at all by the age of 4, we knew that we had to get him diagnosed,” Stacy said. “He needed additional help and without the autism label he wouldn’t get it. Josh has received private speech and OT for five years and for the last three years he has been doing intensive ABA therapy.”
Josh also sees a doctor in Chicago that specializes in helping kids with autism.
“She doesn’t make any promises but Josh spoke his first words less than six months after she started treatment,” said Stacy, who described Josh’s autism as mid-functioning with the potential to be high functioning.
“Josh’s life is impacted each and every day by autism,” she said, noting that Josh is unable to have normal social interactions with other kids or establish friendships with peers of his own.
“And even now, he has very limited speech and is by no means functioning at a normal level,” Stacy added. “Josh tried to attend the typical public school but the setting did not work for him. The classrooms were too loud and the special education room were not pushing him hard enough.”
As a result, the Brakefields decided to send Josh to an ABA center and Josh has thrived ever since.
The Brakefields acknowledged the many challenges associated with having a family member with autism.
“It’s hard to watch your child grow up without any friends,” Stacy said. “As much as you try to cultivate friendships for him, you know you can’t make it work like a friendship between two kids. Nothing is normal for us, we have to adapt to every situation. Just a simple trip to Target requires planning so you are in and out before he breaks down or runs away or tries to take all the greeting cards off the shelf so he can sort them. Going out to eat is a matter of timing. We never go to a place that would require any type of a wait. There has to be gluten free items available and we have to get in and get out. No chatting, just eat and leave.”
While these issues have their own challenges, the biggest one might be the cost of treatment.
“A lot of the treatments we have for Josh are not covered by insurance so we have a lot of out of pocket fees, sometimes more that we can manage but we have do it for our kids,” said Stacy, who said the cost to raise a neuro-typical child to age 18 is $300,000 and the cost to raise a child with autism can run much higher.
Of course, parenting a child — one with or without autism — is packed with special moments.
“Josh is the most loving and cuddly kid you will meet,” Stacy said. “If he lets you in his world, it really means something. He will give hugs and kisses and laugh the best laugh that you have ever heard. Just recently when I asked him if he loved his mom, he said yes for the first time. It was worth waiting nine long years to hear that.”
Stacy said autism has actually helped them avoid some of the drama that comes with kids nowadays.
“He doesn’t care what shoes or clothes he wears. He doesn’t want to or need a cell phone. He doesn’t talk back to us. He doesn’t ask to spend a lot of money on things we can’t afford,” she said.
If she could talk to others about autism, Stacy hopes that people will remember that just because a kid looks normal, it doesn’t mean he doesn’t have something going on his head.
“At times, we will be places that might be too loud for Josh and it causes him to get very antsy,” she said. “People look at us like we can’t control our kid. What I want to tell them if you heard what he is hearing you would be jumping all around too. Staring at the kids in stores and at restaurants is rude and very hurtful to the parents. Offering a kind word or even a smile makes our journey a little easier.”
• To learn more about autism, visit the TACA website at www.tacanow.org or the Holland Center website at www.hollandcenter.com.
Contact Todd Moen at [email protected]