He Ain’t Heavy, He’s My Brother: 10 Strategies for Supporting Special Needs Sibling Relationships

Like a boulder in a rushing stream, our daughter sat calmly reading on a chaise in the living room, her brother sprawled on the floor next to her, crying and tantrumming. Three adults (me, a babysitter and an ABA therapist) swirled around trying to get him off the floor and back on track. Throughout, his sister was absorbed in her book, unfazed by the special needs melee.

Not for the first time, I recognized how different her sibling experience is from mine. I grew up with three typically developing siblings. She and her typically developing younger sister are growing up with a brother with autism.

What’s it like to grow up with a sibling with special needs and severe behavioral challenges? I’m curious about the girls’ experience and want to support them and their relationship with their brother. By coincidence, the night of the tantrum I was attending a panel discussion featuring people who had siblings with special needs. Through personal experience, research, and educational events like the siblings panel, I’ve learned ten strategies for nurturing the special needs sibling relationship, which include emotional as well as financial and logistical supports.

Assume Full Responsibility

Clearly communicate to your typically developing children that you (the parents) are responsible for your special needs child’s lifelong health, safety, stability and happiness. “It’s my job to take care of your brother,” I tell his sisters at every opportunity, and back it up with my actions. Whether they express it directly or not, siblings are thinking about this issue. His sisters have already asked the question, “Who will take care of our brother when you die?” Take charge by creating a plan for lifelong support and communicating it to your immediate and extended family.

Set Up a Special Needs Trust

If your child receives or is eligible for government benefits such as Medicaid and Social Security (SSI), it’s important to set up a special needs trust to provide ongoing financial support for your child while preserving eligibility for government benefits. The primary purpose of a special needs trust is to pay for items or services that aren’t covered by Medicaid or SSI, ranging from clothing to a personal caregiver if needed.

Set Up an ABLE Account

People with disabilities now have access to an ABLE account. Think of it as a 529 (college savings account) for the expenses associated with living with a disability. You can invest up to $10,000 tax-free and the account can be funded through your child’s special needs trust.

Ensure Access to All Available Benefits

If your special needs child won’t be able to live independently, as is the case with our son, ensure that your child has the services needed for housing, supported living and health care after your death. Our son is a client of the Regional Center, receives In-Home Supportive Services and Medi-Cal services, and may qualify for other benefits as he gets older. I will ensure that he has all resources available to him for the life-long care he will need, and advocate to preserve those benefits.

Celebrate Accomplishments

Several speakers on a special needs siblings panel said that their parents had downplayed their accomplishments and achievements to avoid hurting the feelings of their special needs sibling. For our family, it’s the other way around: I have to actively look for opportunities to celebrate our son’s achievements. Recently he got a certificate for following the rules on the school bus, which I taped on the fridge. The girls giggled but they also congratulated him. All children need and deserve to be independently celebrated.

Give Them Space

A psychologist once observed that our son takes up a lot of space: he is verbal, loud, and frequently inappropriate. In some ways, providing distance is getting easier as the girls are getting older, their lives are naturally separating from his with birthday parties, activities, outings with friends. But when the children were younger I had to consciously limit and monitor joint activities with their brother, especially for his younger sister. It’s also important to find time to spend alone with each of your children. On the weekends, I carve out time to take each child on errands alone.

Find the Humor

A special needs sibling can be disruptive at worst, annoying and embarrassing at best. Our son throws tantrums, makes inappropriate comments and, at times, intrudes on time with friends and family. In his worst moments, he can be physically aggressive, destroy property, swear, and spit. The more that you can lovingly and respectfully find moments of humor to share together as a family and frame your child as quirky, different and lovable, the more you can build up goodwill for your child. The girls and I respectfully share funny stories about their brother, like the time that he invited the UPS delivery man for a sleepover, or when he “helped” a young man pull up his fashionably low-hanging pants.

Talk Openly and Honestly

Build and maintain open lines of communication both within in your family and in your community. Some questions and comments will be painful – “Will he ever get married?” “What if I have a child with autism?” “I wish I didn’t have a brother with autism” – but I’ve found that acknowledging his sisters’ emotions and addressing their questions matter-of-factly helps to ease the sting.

Acknowledging that we all face challenges, whether we have a disability or not, helps to broaden his sisters’ perspective; as does reminding them that their brother did not choose to have autism and needs our family’s unconditional support and love.

There’s an educational component to parenting a special needs child, and increasing understanding about differences can help to smooth your child’s path in life. I’ve helped to organize diverse abilities awareness events at his sisters’ elementary school, bringing in speakers and organizations that provide services to people with special needs, such as guide dogs. The students enjoyed the conversations that these events generated and many parents expressed gratitude for the chance to have an open dialogue about differences. I also conduct a lot of community outreach – writing letters to coaches and neighbors, even setting up a meeting with our local police department to introduce them to our son.

Help Siblings Answer Questions

People are curious about autism and people who are different. I help his sisters develop responses to common questions or to brainstorm responses to questions that they aren’t prepared to answer. Unfortunately, common ones are: “what’s wrong with your brother? Or “why is your brother weird?” Our go-to response: “there’s nothing wrong with him. His brain just works differently.” And why wait for people to ask? I’ve found that letting people know upfront that our son has autism can proactively prevent misunderstandings and ease discomfort.

Find Your Support Network

Connections and relationships with other families with special needs children or with typical families who accept your non-traditional family structure are critical for your family’s well-being. I meet regularly with other parents who have special needs children and am active in our local special needs community. Seek out organizations that cater to people with special needs – join parent groups, listservs, and private Facebook groups to stay up-to-date on benefits, services, respite nights, events, and activities. Our family has participated in some amazing activities through special needs organizations – sea-kayaking, surfing, skiing, attending plays, and family camp.

Our younger daughter participates in a therapy group for siblings of children with special needs, and appreciates being able to share her feelings with people who understand her unique experience. Our older daughter is a peer mentor in her middle school’s special day class, and received a citizenship award for her ability to connect with people who have disabilities. Special needs parents need adult support and respite in order to effectively parent and care for each of their children’s unique needs.

It’s challenging but important to nurture special needs sibling relationships. After your death, your child’s siblings will likely be the trustees for his or her special needs trust and make decisions ranging from housing to health care. For emotional and pragmatic reasons, siblings will be a lifetime resource for your special needs child, and hopefully loving friends as well.

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Side Effects: Three strategies for evaluating whether and when to use medication

Have you considered medication?

No matter how gently and kindly put, it’s a question that parents of a special needs child wish they didn’t have to hear. Deciding whether and when to use medication for a child is difficult for many reasons: children can’t give consent, medications often have side effects and the long-term effects on brain and body are sometimes unknown. Although parents have the final say, the child’s team (teachers, therapists and doctors) will also have opinions. And parents can feel pushed and pulled between different agendas and perspectives.

To make these decisions, we’ve come to rely on three strategies: considering the side effects of inaction as well as action, clearly identifying treatment goals and tracking progress toward those goals. Here’s how we applied those strategies in situations where we had to decide whether to use medication.

Managing ADHD

Our son has ADHD (Attention Deficit Hyperactivity Disorder) as a secondary diagnosis. When his team started pushing early (in preschool!) for medication to help our son focus, we did not feel comfortable – he was enrolled in a play-based program with limited academic expectations. But when he started elementary school, we wanted him to learn important academic skills such as reading, writing and math.

We discussed our ambivalence about ADHD treatment with our son’s developmental pediatrician. He advised us to think about the side effects of NOT using medication, as well as the side effects of using medication. ADHD medications have side effects such as suppressing appetite and making sleep more difficult, but without this medication, our son simply could not focus enough at school to learn effectively.  

His developmental pediatrician also advised us to identify the goals for treatment, in this instance maximizing our child’s ability to learn crucial skills for independence and self-sufficiency (e.g., reading and math skills). When we considered the side effects of inaction and our goals for using the medication, we decided to treat him for ADHD. His teachers reported clear progress – he was able to focus for longer periods of time and to complete tasks more effectively. We had to try different medications and dosages, but eventually we found a medication that helped to manage his ADHD.

Managing Seizures

Almost two years ago, our son started having seizures, which needed to be controlled with medication. That was an easy choice. The side effect of not medicating him would be uncontrolled seizures. Our goals for treatment were to stop the seizures, and to keep him safe and healthy. Since he started the medication, he’s been seizure-free.

Stabilizing Moods

More recently, we had to decide whether to put our son on a medication that would help stabilize his moods. This choice felt particularly difficult. I felt guilty for considering medication that would make him easier to manage. Was it only for my benefit? We applied our analytical framework. The side effects of not treating him were angry outbursts several times a day and difficulty recovering from tantrums that could last several hours. Our goals were to minimize his outbursts and increase his ability to cooperate, participate in group activities, and follow directions. Before starting a trial of the medication, we coordinated with his school to track his behavior with a Functional Behavioral Analysis (FBA). To develop an FBA, a school-based behavioral specialist takes detailed notes to identify and understand the triggers for his problem behaviors and creates a plan to address them. School staff track progress against specific outcomes, such as number of tantrums and ability to participate in group activities. The behaviorist used the outcomes data to create a graph that showed a remarkable improvement in his problem behaviors at school. Because our son was less angry and prone to outbursts, he could participate more fully in classroom activities. Plus, he was easier to manage at home.

While it’s not an easy choice, medication can be another tool for supporting a special needs child. These three strategies – considering the side effects of inaction as well as action, defining the goals for treatment and tracking progress toward those goals – provide us with a clear and consistent framework for making decisions about whether and when to medicate.

 

 

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Stupid head, furball, “iniot” and other favorite phrases

One of the joys of raising a child with a developmental disability is a tendency to latch onto and repeat random words or phrases that they hear from TV shows, movies, older siblings or from your-guess-is-as-good-as-mine. And this isn’t your typical favorite phrase, you will hear these words repeatedly for an extended period of time – we are talking months or years. Here’s a history of my son’s favorites, which he uses to express his anger or frustration. And that doesn’t happen often with a child with autism, right?

Stupid Head

Our son started off strong with “stupid head.” It was a staple during his preschool years, thanks to his older sister. Teachers, classmates, parents and siblings earned the moniker for offenses that varied from asking him to do something he didn’t want to do, to transitioning him from one activity to another. We worked patiently with teachers and therapists to extinguish (special-needs speak for “stop”) and replace the behavior. After about two and a half years, we finally conquered “stupid head.”

Furball

He then transitioned to calling people “furball,” courtesy of a Berenstain Bears episode. At least this one was somewhat benign, but after a couple years living with “furball,” even an f-bomb starts to feel like a better option. Again, patient, repetitive coaching from teachers and therapists over two years helped to break the habit.

“Iniot”

Next, our son moved on to “Iniot.” He has one of those adorable kid accents where they trade syllables for each other, in this case “N” for “D.” Yep, that’s right, he was really saying “idiot.” Lovely. At least, his pronunciation created some room for interpretation. “What’s he calling me, an Indian?” asked one puzzled teacher. “Yes,” I said. Fortunately, “iniot” only lasted a year.

Witch, You’re Fired, Etc.

We’ve made some progress recently. Rather than one phrase, my son now has a variety of options that he plucks out of his garden of inappropriate phrases, depending on his mood. One – courtesy of every Disney princess movie – is “witch,” which unfortunately sometimes sounds like he’s swapping “B” for “W” (this time the cute kid accent didn’t work in our favor).

Like a mini-Donald Trump, he also likes to tell therapists and teachers, “You’re fired!” Although what every person who works with him really deserves is a promotion and a raise.

Prove it

We know we’re not alone. Every year, we attend a family camp for families who have children with developmental disabilities. Two years ago a friend came with her two daughters, one of whom has Down Syndrome. The moms gathered in a cabin at night to chat and commiserate over a contraband bottle of wine. Almost every sentence my friend’s daughter uttered included the phrase, “Prove it!” Two years later I saw my friend and her girls at a special needs family picnic. Not long into the conversation her daughter chimed in, “Prove it!” Her mom and I looked at each other. Her weary expression was a reflection of my own.

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Rinse and Repeat: a Mom’s Beauty Regimen

I should have known better.

Usually I put a hard stop to the up-sell, but the cosmetics salesperson caught me at a vulnerable moment. I’d come in to get my makeup done for a party. The bright fluorescent light at the makeup station spotlighted every age spot and discoloration. “Are you wearing at least SPF 30 every day?” asked the makeup artist. Nope, not year-round, I had to admit.

After our session, she led me back to the sunscreen section. As I was browsing, desperate to prevent further sun damage, another salesperson pounced. “How do you take off your make-up?” he asked. “I’m just a soap and water gal,” I said, putting up a little resistance. “That’s fine,” he said, “but let me show you this amazing Japanese-inspired cleansing system.” Too much time and money later, I left with a special cleansing oil and a fancy clay-based sponge. That night, I dutifully used the new oil and sponge to remove my make-up and hung the sponge in the shower to dry.

The next evening, my husband emerged smiling from the bathroom. “Is that your sponge that our son is using?” I walked in to find him reclining in the tub, gently cleaning his (ahem) with my new sponge. I rinsed it thoroughly and found a new hiding place. My friends wanted to know – would I use it again? Of course. I’m a mom. Rinse and repeat.

Can't wait to use this again!

Can’t wait to use this again!

 

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Social Sheepdogs: Nipping and Nudging into the Mainstream

For several years, our son with special needs has participated on recreational sports teams to develop his social skills and to get some exercise. He has played (and I use this term generously) soccer, basketball and baseball.

Coordinated and tall, he could master concrete drills like kicking the ball into the net or hitting a ball at batting practice, but struggled with abstract concepts such as which way to run (especially because teams switch directions at half-time) and even understanding why the other team was trying to take the ball from him.

Sitting on the sidelines during one basketball game, I watched my son’s teammates react to his inappropriate behavior. He got the ball, wouldn’t pass it to anyone, ran down the court without dribbling and tried to score a basket. They yelled at him, and laughed at his mistakes. At first, the ferocity of their response was startling, they brought to mind a snarling pack of dogs as they growled and scowled at him. And then I realized that was exactly the function their behavior served – they were acting as social sheepdogs, nudging and guiding their peers toward socially acceptable behavior – except my son was oblivious to their herding.

sheep dog picture

Once I understood the purpose of their behavior, I also realized that their bark and bite wasn’t intended to hurt in a lasting way, just to smart a bit and get you back in line with the group. My typically developing girls would never forget the embarrassment of their teammates laughing at them if they accidentally scored a point for the other team, and it would motivate them to learn from their mistake. My son? Not so much.

Although he has trouble learning appropriate behavior via social cues, my son can learn through deliberate and direct strategies that involve explanation, facilitation, modeling, repetition and practice. The sheepdogs can’t herd this particular sheep, but with the right support my son can still be part of the herd.

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Mom Falls Asleep Monitoring Child’s Texts: 4 Strategies for Navigating the New Media Frontier

Zzzzz… What? Oh sorry. I fell asleep reading my daugther’s texts.

A newly minted middle-schooler, she wants a phone of her own, but we think she’s too young. Our challenge – most of her friends have phones, and she feels left out when they talk about texting and all their social media fun. Our solution – give her an old cellphone that only works on wifi. She was delighted. Her account quickly filled up with her friends’ pictures, videos and messages. But monitoring her messages just as quickly became a chore. Here’s a sample:

IMG_0818

At least I’ve learned two new acronyms, WYD (what are you doing) and GTG (got to go).


IMG_0834

As innocent and inane as my daughter’s first foray into social media is, its use presents a challenge for families. We personally know really nice kids who sent inappropriate texts that went viral or who got bullied over social media.

A recent study shows that cyberbullying is now more common than face-to-face bullying for kids.

Our generation is the pioneers of parenting on the new media frontier, and it is a lawless wild west filled with shady characters. Our parents can’t advise us because they don’t have any experience with sexting, inappropriate pictures on instagram and bullying on SnapChat. And the experts agree: children do not understand the implications of social media use and are likely to use it inappropriately. Plus, those messages and pictures don’t go away easily, and can have long-lasting repercussions if seen by future employers or college admissions officers.

Pink Fluffy Unicorns and Other Search Topics

For our special needs son, social media use is not interactive, devoted instead to searches on his favorite topics. He quickly mastered YouTube, where his tastes ran toward princess makeover demos and music videos such as Pink Fluffy Unicorns Dancing on Rainbows, before moving on to a new site that lets him download full-length Disney movies. He has just once (so far) encountered an XXX site during a “Wizard of Oz” search, but parental controls on content helped fix that problem. We also have our family computer in a common, highly visible area.

Four Strategies for Navigating the New Media Frontier

For all of our children, we’ve decided to take on social media use step by step, with four strategies based on the premise that our children are not sufficiently mature to understand the potential negative consequences of social media use:

  • Delay use of devices and various forms of social media as long as possible.
  • Limit or prohibit access to content that’s not age-appropriate.
  • Teach our children to be competent, respectful digital citizens.
  • Monitor all of our children’s internet searches, emails, texts and social media accounts.

Yawn, makes me sleepy just to think about it.

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4 Surprising Benefits of Interacting with My Special Needs Kid: Hint, it makes you smarter

As a mom with a PhD, I love it when research supports my mom instincts. Those instincts tell me that typically developing children and their families benefit from spending time with my special needs child, and science thinks so too. A slew of studies demonstrate the benefits of interacting with people who are different from you, here are four that may surprise you.

It makes you smarter

Research shows that when you interact with people who are different from you, it improves your cognitive skills and critical thinking. How? Through a process called effortful disequilibrium: when our view of the world gets challenged, it grows our cognitive skills and ability to deal with complex issues.

It broadens your social circles and friendships

These interactions rewrite the “us versus them” mentality by reducing prejudice, enhancing empathy and deepening understanding of people with diverse backgrounds and abilities. Because greater awareness leads to openness and tolerance for others, you enjoy more cross-group (i.e., out of your comfort zone) friendships.

It makes you a more flexible, action-oriented and engaged global citizen

Interacting with people who are different from you helps to develop a pluralistic orientation. This means that you are more open to different perspectives, more willing to challenge your own beliefs and to negotiate with others who disagree with you. You are also more likely to discuss and engage with complex social issues, and to consider different approaches to solving problems. It also motivates you to take action to solve problems.

It makes you more successful in the workplace

A study by the RAND Institute suggests that the cognitive and social skills that employers value most include the ability to work effectively in diverse groups, openness to new ideas and perspectives, and empathy with other people’s perspectives. These skills are crucial for 21st century workers, where it’s projected that 85 percent of new workers will be women, immigrants and minorities.

It’s worth the effort

Okay, this is just a mom reason. My son is sweet and funny, and he loves people. He’d benefit from spending time with you too.

 

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Seizures and Autism: A Numbers Game

5:30 in the morning. My husband was walking by our son’s bedroom and heard strange noises. He peeked in, and saw our son having a seizure. It lasted for about a minute, and only involved his upper body. After the seizure stopped, his face and one arm were partially paralyzed for a short time. Our son was conscious during the seizure. He spoke afterward about “shaking” and “feeling sick.” My husband drove him to the ER of our local children’s hospital. I joined him there after getting the girls to school.

What are the Odds?

We learned that people with autism have a 25-30 percent higher incidence of seizures, and that about one-third of them also have epilepsy.

According to the Epilepsy Foundation, a seizure is a sudden surge of electrical activity in the brain, while epilepsy is a disease that involves recurring seizures.

This was our son’s first seizure. Because he was conscious and it only involved his upper body, the doctors described it as a partial seizure. They reassured us that all healthy people get one free seizure pass – but if it happened again, they would want to discuss treatment options and his odds of having another would sharply increase. We scheduled an EEG for the next week, and went home with some basic instructions about how to care for him during a seizure (make sure he’s on his side to avoid choking) and safety tips (don’t leave him alone in the bath).

Diagnostic Tests: EEG and MRI

To prepare for the EEG, our son had to be sleep deprived. Our instructions were to keep him up until midnight, and then wake him up at 5 am. I’m usually in bed by 9 pm, so my husband (who needs a lot less sleep than I do) stayed up with him and woke him up early too.

Yep, wide awake!

Yep, wide awake!

The EEG itself was uneventful although, not the least bit sleepy, my son giggled and wiggled during the whole procedure. His nurse told us that children with autism rarely fall asleep during the test, no matter how sleep deprived. (Maybe it’s time to revisit the protocol for kids with autism?). The results showed a focal abnormality in part of his brain, on the same side as the seizure. Next step, we scheduled an MRI to see if there was an underlying structural issue such as a tumor.

Before the MRI, our son had another early morning seizure, same time and same characteristics. Now his odds of having another seizure jumped up to about 60-70 percent. We immediately started him on an anti-seizure medication, to which he responded well.

His MRI results were normal, and his doctor advised keeping him on an anti-epileptic medication for 18 months to two years. The longer he goes without having a seizure, even while on medication, the more chance he has to outgrow the condition. So far, we are seizure free.

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Princess Boy: Two strategies for turning Barbie into C3PO

Sandwiched between two sisters, it’s easy to see where our special needs son gets his love for all things sparkly, pink and royal. At first, we decided not to make an issue of it, and our princess boy happily pranced around in mermaid dress-up clothes and asked for dolls at every gift-giving opportunity. While typically developing kids may have a deep interest in a toy, topic or play theme for about six months, our son lived in a magical kingdom for a solid three years.

DSC_0191Really Dude, Barbies?

As he grew older, we realized that we needed to manage his obsession with pink-hued play options. For one thing, his peers were starting to notice. “Really dude, Barbies?” asked one younger boy, when our son was discussing his interest in dolls.

Social interactions will always be a big challenge for our son, and we didn’t want his interests to contribute to the problem.

Expanding and Redirecting

To help find a balance, we used two strategies: redirecting and expanding. Most parents know the strategy of redirecting, and it works great with typical children: you redirect a child’s attention to something else by offering another option. Here’s an example: your youngest child is throwing a fit because her older siblings are excluding her from a game. You redirect by a) offering to read her a book, b) finding a game that all three can play, or c) banishing all three outside to play while you pour yourself a glass of wine.

Redirecting isn’t sufficient for kids with autism because of their tendency to focus with laser-like intensity on ideas and objects, also known as perseverating. But fortunately there’s another strategy you can use in tandem with redirecting, which builds on the child’s interests and develops them in different directions, it’s called expanding.

We started working with an in-home Applied Behavioral Analysis (ABA) therapist and our son’s teacher to expand his interests.  For instance, we expanded his princess theme by getting a castle that any boy would love – dark, scary and complete with dragons, a moat with flames and a prince. His in-home therapist also encouraged him to play the part of the prince in games.  At first, he wasn’t having it: “I’m not a prince, I’m a princess,” he declared, but his (male) therapist kept talking about how great princes and boys are, and one day my son decided he was a boy after all. At school, we shifted his rewards from princess stickers to iPad activities.DSC_0203

We also encouraged his interest in any character or toy that was more gender neutral, or boy-focused. He doesn’t have an interest in sports teams or athletes, but he likes baseball hats, a small victory. Recently he discovered Star Wars and Chima Legos, and happily dressed as C3PO at Halloween. We also bought him clothes and toys featuring gender-neutral characters from popular movies, like the Minions. If that sounds too pricey, printing a picture of the character or toy for him to carry around was often enough.

Finding a Balance

While he still gravitates toward his sisters’ interests, and enjoys activities and toys that are more girl-oriented than boy, our son now has enough gender-appropriate interests to engage peers in play and conversation.

 

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