Manscaping Mishaps: Hide Your Razors

When my 15-year-old son started sprouting a baby mustache, his sisters promptly campaigned to shave it. “It’s not a good look mom,” they said, and I agreed. But their brother balked at the idea – until I bribed him with dessert.

We met in the bathroom to shave the dark fuzz from his upper lip, and I quickly realized that I needed reading glasses for the task. When I returned, glasses in hand, I found him finishing the job independently. “That went well, he’s showing some interest,” I thought, always looking for opportunities to increase his self-care skills.

A little too much interest as it turned out.

My son appeared in the family room about an hour later. “Mom, I’m sick,” he said. “I hurt myself.” Alarmed, I followed him to his bedroom. He pulled down his pants to reveal a freshly manscaped groin area, complete with a band aid on his right [ahem]. “I hurt myself here, and on my bottom,” he said, pointing to the bandage. “I don’t think I can go to school tomorrow.”

“Honey, please don’t shave other parts of your body, just your face,” I said, desperately suppressing my laugher. “And you are definitely going to school tomorrow,” I noted, dashing any hopes for time off to recover from a manscaping mishap.

“I know, I’m sorry,” he said, chastened by the natural consequences of aggressive shaving.

In the bathroom, a light dusting of pubic hairs coated the bathtub, corroborating his story. I found his older sister and told her what happened, laughing until tears streamed down my face.

“Can you please get me a new razor?” was her reasonable follow-up request.

I will, of course, and my son will also get his own electric razor. In the meantime, my advice to both daughters – hide your razors.

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The reluctant baker: solving a holiday dilemma

Misshapen jammy pinwheels

Every December, I do the same calculation: 1 classroom teacher + 2 classroom aides + 1 principal + 1 behaviorist + 1 speech therapist + 1 counselor + 1 occupational therapist + 1 bus driver = $1 million in holiday gifts for my son’s teachers, aides, and service providers. Students in special education don’t just have teachers, they have teams. These educators are dedicated, heroic, hard-working, and often underappreciated. Unlike general education teachers and staff, many of these providers do not receive holiday gifts because they work in specialized settings or their classrooms don’t have room parents.

My assignment is to gift each person with a variety of cookies in a holiday tin. And let’s not forget gifts for my daughters’ teachers too!

And so I bake. But I am a reluctant baker, it does not come naturally. Unlike cooking, baking requires a type of precision that feels picky and rigid. Inevitably I skip a step, forget something, or misread a direction. Baking soda, baking powder – what’s the difference? Why do the sugars sometimes go with the dry ingredients and sometimes with the wet? Do I really have to pull out that huge mixer that requires two people to lift onto the counter?

To share the experience, I’ve annotated a few of my favorite recipes complete with solutions to obstacles I’ve encountered:

Oh heck no” Dulce de Leche Gingersnap Sandwich Cookies

Problem: I’m not going to make dulce de leche AND cookies from scratch; Solution: Bought a jar of fancy caramel sauce for the filling.

Misshapen Jammy Pinwheels

Problem: Instead of looking like circular wheels, my cookies looked like squished oblongs; Solution: Close your eyes when you eat them.

“Forgiving” Outrageous Chocolate Cookies

Problem: I accidentally melted all of the chocolate instead of reserving some to mix in later. Solution: Chocolate is very forgiving.

Sticky Cranberry “Never Again” Gingerbread

Problem: This loaf got rave reviews and so I’ve made it over and over. Solution: You cannot pay me to bake this again.

”Sandy” Chai Spiced Sugar Cookies

Problem: Seriously, it’s not me, I followed all the directions and the dough felt like sand. Solution: Added another egg.

Enjoy and happy holidays!

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New tooth fairy in town: the last true believer falls

“Mom, I know your secret. You’re the gift giver,” my son said.

And just like that, I lost my last true believer. Thanks to autism’s innocence and credulity, we had a good 12-year run of Christmas magic.

“You figured it out, you’re so smart!” I replied.

Then the dominos of childhood fantasy fell one by one – “and the Easter Bunny, and the Tooth Fairy?” he asked.

“Yes,” I admitted.

“Don’t worry, I won’t tell the girls,” he said. His sisters, of course, have not believed for years.

A few days later, my youngest daughter lost a tooth.

“Can I be the tooth fairy?” my son stage-whispered in front of his amused sisters. “Does he know?!” his older sister mouthed silently to me.

My son assumed his tooth fairy duties with exuberance, and the stealth of a cat burglar with wooden boots and a limited theory of mind. Lots of loud whispering and obvious attempts to sneak into her room later, he had hidden the tooth box under his sister’s pillow and then “snuck” back in to replace the tooth with money. His sister played along with a mixture of apathy and irritation. “I know what he’s doing,” she muttered at one point.

In the morning, he asked his younger sister whether the tooth fairy had come. She looked at us both and shrugged, “I guess.” Undeterred by her lack of enthusiasm, my son smiled and winked at me. There’s a new tooth fairy in town.

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Ghost Boy

Parents see ghosts.

My teen-aged daughter sings with her high school choir, and I see the ghost of the baby girl who bounced up and down with excitement in her crib when I walked in her room. My ten-year-old rests against me on the couch, and I feel the ghost of her tiny body that once fit entirely on my chest. My son walks by and I see his ghost toddling toward me. Kids grow and change so rapidly that I sometimes have the head-spinning experience of simultaneously living in the past and the present.

Parents of a special needs child also live with the ghost of “What Could Have Been.” We’ve lived in the same town since my son was born, and I have watched the boys his age mature from toddlers to teens. They attend the same schools as his sisters, while my son attends a non-public school in another city.  When I walk his sisters to school, I see his peers playing games before school starts – tag, kickball – and I see my ghost boy playing too.

I love my real boy, my flesh-and-blood, heart-beating boy, but it took about two years to accept and reconcile the ghosts of “What Could Have Been.” Over time, my real boy banished those ghosts with his sweetness, quirks, enthusiasm, and innocence. He is funny, he is kind. He surprises us and makes us laugh with unexpected comments and funny fixations – like his love for Jane Fonda (who voices an animated character in a show he watches).

My hope for each of my children is that they create a life with meaningful relationships and work. That they feel loved, supported, and fulfilled. My son has shown me that there are many paths to a meaningful life. Although his path to happiness is less-traveled, my son loves his life, he loves his family, he is deeply loved.

I’m also aware that in the lottery of life, my boy has it better than most. He was born in a country with programs and services for people with disabilities. He was born into a family with the resources, patience, and skills to care and provide for him; and an abundance of grandparents, aunts, uncles, and cousins to love him. He lives in a community that knows and accepts him. He attends a school with highly trained teachers, and has a team of specialists committed to his well-being. And in the lottery of parenting, I received a child who has given me a different perspective and deeper understanding of unconditional love, happiness, and the privilege of parenting.

Now when ghost boy comes to visit, we sit side-by-side and watch my real boy as he checks out books from the library, or sings along to a favorite song. We watch him at his annual therapeutic horseback riding show where he hoists his trophy high and waves to the crowd. I hug my warm, lovely, happy boy and when I turn around, the ghosts are gone.

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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 $100,000 tax-free and can fund the account 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.Facebooktwitterlinkedin

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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.Facebooktwitterlinkedin

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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.Facebooktwitterlinkedin

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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.Facebooktwitterlinkedin

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