Cameron Anderson was 2 1/2 years old when his younger sister Natalie was born. When she came home from the hospital, it was more than just a typical family of three adjusting to life as four. Natalie was diagnosed early on with a host of illnesses, including a mitochondrial disease, epilepsy and autism. His parents were determined to keep life as normal as possible and worked hard to create a lasting bond between their children.
"It’s really all he knew," says Sue Anderson of Wixom. "That made educating him about his sister’s conditions much easier. As a 3-year-old, he knew his sister had a tube hanging out of her nose and that was how she ate."
Rather than dwelling on the fact that they had a child with autism, they tried to look at everything in a positive light.
"Back in those early years, we would celebrate moments when he could play with her and she could interact with him," Anderson says. If Natalie was returning home after a hospital stay, Cameron would make a cake and hang balloons to welcome her back. Anderson made sure Cameron was included in occupational therapy with Natalie. He stood by his little sister’s side, cheering her on when she took her first steps.
"Things that are taken for granted in a normal family were celebrated more in our house," Anderson says.
Having a child diagnosed with a special need is often a difficult adjustment for the parents. They become focused on therapies, schedules and caring for a child with special needs, leaving less time for children who don’t need special care. And yet, there are things that parents and "typical" siblings can do to sort out the emotions of a home life that is far from typical.
In it together
Melissa Hunt-Sampey was also 2 1/2 when her brother Brian Hunt was born. He was diagnosed with autism at the age of 4. As he become older, he became difficult for her parents to handle. Hunt was hyper and sometime violent. Knowing his parents were getting burned out and exhausted from caring for such a challenging special-needs child, someone at Hunt’s school, the Burger School for Students with Autism in Garden City, introduced them to the St. Louis Center in Chelsea, a residential facility for children and adults with developmental disabilities.
"It’s really been the best decision ever," says Hunt-Sampey. "He has really thrived. He has friends and he feels accepted."
Armed with the knowledge that she developed through her life, Hunt-Sampey is reaching out to other siblings through a book she has written called Love Beyond Measure: A Sibling’s Journey Through Faith and Autism.
While Hunt-Sampey’s parents never sat her down and formally announced that her brother was autistic, Hunt-Sampey says she knew early on that her brother was different.
"As a sibling, I don’t think it really clicks in that something is wrong – you just accept it. Something is off. He is special, but that’s OK, because he is my brother," Hunt-Sampey says. "When you have a brother or sister, you are in it, too. That’s sort of how our family approached autism. This is our family. This is who we are.
"We deal with everything as a family. My parents raised me that this is your brother. You love him and cherish him. And at the same time, they knew I wanted my independence."
Brandon Bremer’s brother Brian also spent some time at the St. Louis Center. Brian Bremer is not Bremer’s only special needs sibling. He also has an older brother with cerebral palsy who is a quadriplegic.
"Both of my older brothers have disabilities," says Bremer, who is the fourth of six children. "But I’ve only known them. They are people first and disabilities second."
While his autistic brother didn’t live at home for much of Bremer’s life, his parents still encouraged a bond between all the children. While Brian Bremer was at the St. Louis Center, the family would visit and volunteer at the center. They also did things as a family, like playing games, watching TV and showing support to one another.
"I know chronologically that I’m not his older brother, but I feel a sense of protecting him and taking care of him," Bremer says.
Stephanie Harlan, director of clinical services for Michigan-based Autism ASK, says the relationship between "typical" siblings and their special needs brother or sisters comes from the examples the parents set for them.
"There are kids that are great at including their sibling with autism in all they do. It really depends on the parents and how they raise the children," Harlan says.
Nicole Chinn, a professional counselor who works with Autism ASK, says parents can do a lot to foster the relationship between their children, but also their entire family. She suggests that families do activities together that appeal to everyone. Scavenger hunts, obstacle courses, sensory activities and computer games are things that siblings of any level can attempt to do together that will create a sibling bond.
"Interactive activities that they can engage in together helps them feel connected," Chinn says.
To help Cameron Anderson connect with his sister, his mother would remind him that Natalie didn’t mean to hurt him or that she can’t help it when she has a tantrum or outburst.
"We would witness him educating his friends when he would have them over to play. He has been invaluable to Natalie, too. His friends are her friends. They include her in activities and things that they do, like floor hockey in the basement," Anderson says. "She learns from him and he learns from her. He is an example to her of learning about having friends. He has learned to be extremely compassionate and shows that in the community."
The Andersons also never excluded Natalie Anderson from family activities.
"We always try our best to find activities that she can tolerate," Anderson says. "We never did anything that locked us into a particular time frame in case we had to stop for her."
The Anderson family also bonds through weekends away at a cottage Up North. Vacations to exotic locations would be difficult. It would require traveling with special food and medication for Natalie. There is also uncertainty of a new place, time changes and crowds of people, things that might disrupt the routines that autistic children often need. Having a familiar spot to go and spend time together is something the entire family enjoys.
Mike Montico is the father of two boys. His eldest son Owen, 7, has autism and his younger son, Alex, 4, does not.
"Owen doesn’t have a regular life. He has a brother who will be enriched because he has a brother that isn’t neurotypical," Montico says. "We are constantly engaging both boys. We very rarely separated out what we do as a family. He is part of the family."
Montico says the family often will play games together or they will join in on an activity that Owen is already participating in. He says they regularly encourage him to take part in family activities.
"Alex, even though he functions at a higher level, he looks up to Owen as his older brother," Montico says.
Outside support
While the family relationship is important, so is the typical child’s relationship with others, including their peers.
"I’ve been really fortunate to have a
lot of supportive people around me my entire life. I didn’t really care what people said about my brother," Hunt-Sampey says. She recalls many times when the family was out in public and her brother would have a tantrum or repeat words, drawing stares.
When she was 10 years old, Hunt-Sampey’s family moved. She was nervous about bringing new friends over because she never knew what would happen with her brother.
"If my friend didn’t like my brother, it wasn’t like the friendship ended. I just didn’t bring them around anymore," Hunt-Sampey says. "To this day, I surround myself with people that understand and accept him."
For Cameron Anderson, someone’s ability to accept and understand his sister or anyone with autism gains his loyalty. He stands up for his sister and other children in public who may behave differently and draw attention from other kids.
"I just try to explain to them, based on my best knowledge, what type of autism the person might have and explain that they can’t help it," Cameron says. "I have friends who totally get it and try to make friends with Natalie. I start to lose respect for those who don’t."
Sometimes siblings feel resentful of the time their parents spend with the special-needs child. They might act out or do poorly in school. Autism ASK offers counseling services for those facing this difficulty. Harlan says the counselors validate where the child is coming from and help increase their tolerance of the situation.
"Counseling is always a good thing. The siblings grow up a lot of the time thinking they have to be overachievers to get attention or they act out to get attention," Chinn says. She says she encourages the children to stay involved with things they like to do and demonstrates how they can be heard in the family.
There are local groups to help kids express their feelings and hear that they are not alone. They provide a place where kids don’t have to explain their "special" sibling; the others already understand.
The Center for Exceptional Families located in Dearborn at the Oakwood Healthcare Systems Oakwood Family Center offers programs for families. The Judson Center offers "sibshops" for children ages 5-10 at its three locations, along with other programs. Another option is the Beaumont Hospital HOPE Center, which educates parents on how to work with their autistic children and encourages family participation.
"The family as a whole is really important to the success of the kid. The siblings often get pushed to the background. We try to get parents to see that isn’t the road they want to take," says Jamie McGillivary, clinical manager at the HOPE Center. "We incorporate kids into their siblings therapy and show them ways to engage the child with autism."
Rebecca Lepak of Total Communication – Lepak and Associates in St. Clair Shores says it’s important to help the children understand each other’s languages, even if one of them doesn’t speak.
"They are still developing learners. They are still young and immature, so they have to learn to pick up on the special needs child’s cues – as well as the special needs child needs to pick on their cues," Lepak says.
According to Lepak, children learn to play on the playground with other children. Therapists can help mentor them on how to play with their brother or sister.
"Some siblings are so much more natural at it than others. Some siblings want to be the caregiver and they want to treat them as the broken puppy. That’s even more destructive because they still can’t see the cues," Lepak says.
While the Andersons didn’t use outside therapy or support groups to help Cameron connect with his sister, it wasn’t something they took lightly either.
"We shaped and molded the bond between them and kept on cradling it as they grew," Anderson says.
Lepak says nurturing the relationship over time is important because the interaction and bond between the siblings changes as they grow.
McGillivary of the HOPE Center also runs the Healing Haven in Waterford, a center that uses Reiki, a Japanese technique for reducing stress. She says children are directly impacted by their parents’ stress levels. By reducing the parents’ stress, teaching them time management and mindfulness, McGillivary says the entire family is impacted.
"Parents have to take care of themselves in order to take care of their kids," McGillivary says. "Kids relax when parents relax."
Into the future
McGillivary says that through her research and work with autistic families, she finds that siblings of special needs children often go into a helping profession.
After witnessing his parents care for two disabled children while raising four others, Bremer says he knew he wanted to help people, too. He is currently studying to be a therapist. Bremer’s siblings have also followed that path. One is studying social work, another plans to go into sports medicine and the youngest aspires to be a veterinarian.
Hunt-Sampey has taken her family’s story out into the public. She speaks to autism groups and helps support special-needs charities, especially those focusing on autism.
"I know with everything I went through that I can help those who are confused and may need to talk to somebody," Hunt-Sampey says. That was one of her motivations behind writing Love Beyond Measure: A Sibling’s Journey Through Autism and Faith. "I really connect with siblings who have questions. I don’t think there are a lot of resources out there for siblings, most of the information is catered to parents."
Even for Cameron Anderson, the need to care of others began early. In middle school, he participated in a program that matched him up with a special-needs student. He walked the student to class, talked to him and helped the student make friends. After being part of his sister Natalie’s therapy, Cameron Anderson was interested in becoming an occupational therapist in the future, but he is also drawn to law.
Hunt-Sampey knows that she, like many siblings of children with special needs, will need to care for her brother when her parents are no longer able. The bond they have created and continue to nurture will help them later in life.
"We have a really good relationship. It’s not a relationship you can call and talk on the phone, but he knows I’m his sister. He knows I will take care of him, and he knows I will be there for him," Hunt-Sampey says.
