Parents are skilled jugglers, balancing the needs, wants and interests of our children. When one of those children has autism or other special needs, that juggling act gets even more complicated.
Whether it’s finding the time to shuttle your typically developing child to extracurricular activities between therapy appointments, finding the money to pay for those activities after dealing with all of the medical bills or finding a way to explain the challenges a sibling faces, it might seem sometimes that the typically developing child gets lost in the mix.
“It starts out as resentment because the child on the [autism] spectrum is getting all of the therapy and going places, and Mom and Dad are always with them,” said James Ball, the board chairman of the Autism Society. “Sometimes they feel slighted by that. A good thing ... is to have a special night for that child. Say every Wednesday is mommy or daddy and sibling day, to make them feel special in their way, too.”
I recently spoke with Holly Robinson Peete, an autism advocate and a mother of four, including a 14-year-old son, R.J., with autism, about how to balance the needs of your typically developing children with those of your child with special needs. Peete, along with her daughter Ryan, wrote a children’s book called “My Brother Charlie” (Scholastic, $16.99), which explains autism from the point of view of the autistic child’s sibling.
Peete’s charity, the HollyRod Foundation, in addition to other advocacy work for autism and Parkinson’s disease, hosts an annual My Brother Charlie Family Fun Day in Culver City, Calif., giving the families of kids with autism an opportunity to gather for food, fun and support.
“Every year, the best compliments I get are from moms and dads saying they’ve never seen their kids enjoying themselves so freely with no judgment,” Peete said of the festival.
Here are excerpts from my phone conversation with Peete about siblings of kids with autism.
What inspired you to write the book?
“[Ryan] saw that children didn’t know what autism was. They were talking about [R.J.] and around him and not really to him. She felt like she wanted to do an Autism 101 lesson with her class, when they were in fourth grade. She asked my husband and I if we would come to school and talk to the kids about what autism was. ... It was quite brilliant. We asked the kids: ‘What are you good at and what do you [stink] at?’ Kids would say ‘I’m great in science but not in baseball.’ So we said, ‘R.J. can tell you the name of every president and their vice president, and every single player on every single major league sports team, but he’s terrible at making friends. The room went silent. They were impressed that he could do all this stuff. When [Ryan and R.J.] came back in, he was a rock star. We were blessed to go to a great school that allowed us that opportunity. Most children we know in this journey don’t have that opportunity. Ryan said she wished every school could have an Autism 101, so we wrote a book. ... It’s about a sibling who loves her brother even though he drives her nuts sometimes.
What do people need to know about the siblings?
“There’s so much focus placed on the affected child, so what you find is the siblings feel neglected. ... The most important thing is to find time to have one-on-one time with each child. Even if it’s just an hour, have that time where you’re looking them in the eye. I call my daughter Sister Teresa because she takes on the burden of everything. She’s trying to fit in, starting high school and trying to protect her brother. It’s very stressful for her. There’s a lot of stress with these siblings that we’re not dealing with. We need to give them a chance to release the stress. So much of the family’s money goes to [Applied Behavior Analysis] and therapy and speech, so the sibling can’t do gymnastics or some after-school drama program. There’s only so much pie, and as a parent you’re in a hurry trying to put all your chips in for this one kid. Ryan and I have been doing sibling summits along with a summer camp ... where it’s all about them. They need a little respite.”
What can parents do to help siblings cope with the difficulties they face?
“Encourage them to write their feelings out. My daughter has a blog and I love her blog and her being able to write about her feelings. It’s not always pretty. ... It’s just a weight off their chest, even if it’s not fun to hear. It’s not easy to find sibling support groups, but wherever they’re available, they’re awesome. Ryan led a camp out here. The kids were in one room while their siblings on the spectrum were in other areas of the camp. She led the discussion off, because no one wanted to talk. The next thing you know, a kid is saying, ‘I hate when my brother does that.’ Or ‘We can’t go on a plane, or to a restaurant, we can’t go on vacations.’ It’s like a free-for-all. I would always encourage those groups wherever possible. ... You’d be surprised how easy it is, to have siblings come over and play with each other, or have a barbecue.
“Eventually we’d like to have a St. Jude [Children’s Research Hospital] model, a comprehensive care center, with places for siblings to go, a barber shop, a dentist and everything. Focusing on siblings and treating the entire family is important. ... Siblings get forgotten and the more they have the chance to connect with other people, the chance to talk about their feelings, the better.”
What’s next for you and Ryan and R.J.?
“Now we’re writing the adolescent version. It’s more of a keep-it-real kind of situation. My son is now 14, and he’s hormone city, and these are different hurdles. Ryan’s account of what it’s like to have her brother now is a lot different. We’re trying to paint a more realistic picture of what it’s like to go through middle school. ... It’s been very cathartic for us to write this as a family together.”
For sibling support groups in Northern Virginia, contact the Kilmer Center School in Vienna, which hosts three to four afternoon workshops during the school year for $5 a session. Call Wanda Vander Nat at 571-226-8474 for information. In Maryland, the Arc of Montgomery County will host sibling workshops on three Sundays this fall, for $30 for the three sessions. For information, call 410-578-5169 or e-mail firstname.lastname@example.org . Quality Trust for Individuals with Disabilities will offer sibling workshops in Washington the third Saturday of each month beginning in September. Contact Rhonda White at 202-459-4002 or Quality Trust at 202-448-1450 for information. There are also several online sibling support networks. Visit www.siblingsupport.org/connect or www.siblingsupport.org/connect/sibteen-facebook-group-and-yahoogroup.