Raising a child is hard work, but for parents raising a child with autism, everyday life often brings about a unique set of challenges. From navigating mealtimes to regulating emotions, simple activities that many parents take for granted can feel overwhelming for special needs parents.
We sat down with author and autism advocate Carrie Cariello, who suggests coping mechanisms to help parents overcome these hurdles. Cariello knows firsthand the struggles that parents of children with autism face – her 19-year-old son, Jack, was diagnosed at 18 months old.
Cariello documents her experiences raising Jack on her popular blog. She also is the Day 2 keynote speaker at Metro Parent’s virtual Living With Autism Workshop presented by Henry Ford Health Nov. 6-8, 2023, so you can ask her your own burning questions.
Children with autism often engage in behaviors such as picky eating or disrupting a meal. Cariello says that Jack always stuck to the beige food group – chicken nuggets, French fries and crackers – early on.
“The reason that kids like Jack are drawn to that is because that kind of food is consistent. You always know what a chicken nugget will taste like. You can count on what a pretzel is going to feel like in your mouth,” she says.
Cariello’s family gradually introduced other foods that Jack would enjoy and worked hard to make the dinner table an important part of their family’s day.
To get kids to stay at the dinner table while also being around food, she suggests using a timer, starting at three minutes and gradually working up to longer periods of time. Cariello also got a divided plate for Jack so he could have the power to choose the order in which he ate his food.
Challenge: Emotional regulation
Oftentimes, kids with autism have a harder time regulating their emotions. In Jack’s case, Cariello says, regulation is one of Jack’s chief vulnerabilities. As a result, she has to work hard to keep herself calm inside, so he doesn’t automatically jump to her elevation.
“If we are elevated, we aren’t learning or teaching,” she says. “So, it goes on both sides for the parents and the kids.”
Cariello also recommends pointing out when your child looks calm and asking them what it feels like so they can become more connected with their body.
Challenge: Duality in maturity
While a child with autism may be and look a certain age, emotionally, they are much younger. Cariello says a parent’s inclination is to protect the younger version of them, but in reality, they should be giving their child the same dignity as other kids their age and not be over-parented.
She recommends that parents take a step back to observe what age is most relevant in each parenting situation.
Puberty can be an especially complicated time for families of children with autism. In addition to the physical changes, many of the features that define autism, such as emotional issues and anxiety, can be severely heightened. Cariello remembers that when they were in the throes of puberty, Jack bit a teacher, flipped desks upside down and threw computers on the floor.
“The inclination for parents is to go underground with this stuff because it’s so shameful you have the kid who is destroying school property,” she says. “We tie our own moral compass so closely with our children’s behavior – particularly with autism.”
To overcome this, Cariello advises parents to separate that out and understand that their behavior is not a reflection of what they have or haven’t done. Once you can take your own ego out of it, she says, it’s much easier to address your child’s needs.
Challenge: Social media
Cariello says it’s important to remember when a child meets someone online, they feel familiar with them and no longer consider them a stranger. This makes it especially difficult for a child with autism, who tends to share too much personal information.
Cariello suggests putting boundaries in place – accounts should be private, all followers must be accepted and parents should have access to it.
“It’s just this ongoing dialogue of what’s good to share, what we want the world to know about us – what our electronic and digital footprint looks like and how permanent it is,” she says.
Cariello will share more tips and solutions in her heart-touching keynote session that allows attendees a glimpse into their child’s future as well as insights into the transitional phase of autism once they leave school, Autism After High School: An Autism Mom’s Perspective. Tickets are $25 for all three days, with recordings available to let you watch on your own time if life gets too busy to watch live.
Her newest book, out Dec. 1, “Half My Sky: Autism, marriage, and the messiness that is building a family”, is available for presale.
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