What Moms of Kids With Invisible Disabilities Want You to Know

Parents of kids with invisible disabilities want the world to know it’s only okay to assume one thing: They and their kids are doing the best they can.

While some disabilities demand recognition via a wheelchair, hearing aid, or portable oxygen tank, others are more subtle, but that doesn’t make them any less real. Known as invisible disabilities, these affect 96 percent of people who have a chronic medical condition according to one estimate. Caring for a child with any disability presents extra challenges. For the parents of kids with invisible disabilities, those challenges often include the misperceptions of their communities – including friends, family, neighbors, and teachers – that are uninformed at best and hostile at worst.

I talked to moms of kids with invisible disabilities including Autism Spectrum Disorder (ASD), Avoidant and Resistive Food Intake Disorder (ARFID), hemophilia, and many others, to find out what they wish more people understood about their experiences. Here are some of them.

Sensory processing issues are not discipline issues

According to the American Occupational Therapy Association, sensory processing affects virtually all aspects of a child’s daily life, including motor coordination, school performance, and relationships. A child with sensory processing disorder could have 20/20 vision and perfect hearing, but when he’s in a crowded mall, his brain is not able to manage all of the auditory and visual information he’s receiving through his eyes and ears. While each kid reacts differently to overstimulation, some will scream or become physically aggressive. What may look like defiance is just a kid doing his best to manage a stressful environment. The assumption that a lack of discipline indicates a failure by the parent is totally without merit. Here are few of their stories.

Jaime has a five-year-old son with level one high functioning ASD. She says, “Discipline will not prevent him from being overwhelmed by his environment.”

Lainie Gutterman, the mom of a seven-year-old boy with ASD agrees. She says when her son is having a meltdown, “Staring, pointing and offering your two cents is not helping the situation and will most likely cause my son or myself to feel worse and [his] behaviors to escalate.”

Similarly, Jennifer Lynn, whose son has ADHD, wishes people understood she’s not being rude or indulging her children when she leaves a party abruptly. “It’s just that we see the warning signs and are trying to help our kiddo avoid a meltdown.” She says events like family gatherings or vacations, which are fun for most people, “are stressful for our family because it’s just too much everything.”

A little compassion goes a long way

Regardless of their child’s diagnosis, virtually every mom I talked to described the pain of receiving judgment instead of compassion. Sarah Cottrell, whose son has hemophilia, is tired of challenging people’s assumptions about his diagnosis. She says, “He doesn’t have AIDS and hemophilia isn’t caused by incest. Enough with the wild theories, because we need compassion and empathy for the unseen pain issues and unending fear and anxiety over covering his insurance.”

Most parents I talked to, particularly those of kids with sensory processing disorder, described organizing their days around their kids’ strict routines. Every parent understands how easily the best-laid plans for meals, naps, and bedtimes can implode. What many parents don’t understand is how much higher the stakes are when your special-needs child depends on predictability for a sense of safety.

Lisa Rosen, who wakes up 90 minutes before her kids in order to prepare for the non-stop mental and physical energy her son requires, says, “When adults look at my child, they see a happy kid…. But I know that if one thing is off in our routine, I’m dealing with Hiroshima.” Her son Ezra, age three, has sensory processing disorder and is speech delayed. According to Rosen, something as seemingly minor as the smell of a classmate’s detergent could cause him to melt down to the point where she must carry him out of the classroom – regardless of whether she’s carrying her 15-month-old baby as well. She describes her family’s disappointing absence of understanding when she couldn’t attend the funeral of a family member due to a lack of childcare coupled with Ezra’s regimented schedule and complex needs. “Who knew compassion was so difficult to come by?” she asks.

The predictability some kids require doesn’t just extend to schedules and environments, but also to food. Brianna Bell and Jennifer Gregory each have a child with sensory processing disorder that makes them intolerant of many foods. Because of this, Bell hates sharing meals with friends. She says, “There is so much pressure from others for her to eat this and that and not be so picky. I feel rude bringing my own food but she starves if I don’t. And people just don’t understand and assume she’s spoiled.”

Gregory asserts that her family frequently eats separately. She serves alternative meals and allows screens at the table, and this works for them. She wants people to understand that for her family, “Mealtime is chock full of stress and anxiety and the goal is to get food into our son’s belly because he doesn’t eat enough. If an iPad distracts him from smells and texture and allows him to eat more, so be it.”

Parents described not only a shortage of kindness from other parents, but also from other children. Lisa Beach recalled her son’s adolescent years as being particularly isolating. He is now 20 and has Asperger’s. Beach’s advice to parents is simple: “Teach [your] kids to reach out and include rather than label and judge.”

Just because you can’t see it doesn’t mean it’s not there

When a parent is struggling to find a diagnosis, pay for therapies, or just get through the day with a kid who has an invisible disability, it is not helpful to insist nothing’s wrong because their kid looks so “normal” or that her IQ is so high. What may be intended as a compliment may come as a slap in the face to the parent who has committed precious time, energy, and money to her child’s disability.

Samantha Taylor’s 13-year-old has high functioning autism, generalized anxiety disorder, and an eating disorder, while her ten-year-old has dysgraphia and anxiety. Although Taylor is open with her friends and family about her kids’ diagnoses, because they appear “normal,” she says people are often shocked when her kids say something inappropriate or react in a way that is out of proportion to the situation. Says Taylor, “While it might look to everyone in our lives that we are holding it all together, I worry about my boys every single day. I wake up thinking about what I can do to make their day easier, and go to bed wondering if I did enough.” In search of a supportive community, Taylor ended up creating a thriving Facebook group for moms of kids with special needs.

One mother (who prefers anonymity) describes feeling frustrated when people judge her for coming to her son’s aid. He is in his early 20’s and has high functioning Asperger Syndrome. While she may appear overprotective, that is not the case. She says, “High functioning individuals are acutely aware that they are different and sometimes have self-confidence issues. Shaming them for needing help is not productive and can contribute to anxiety and depression. Thoughtless comments can sometimes ‘undo’ progress that has been made.”

You’re an advocate

Parents of kids with invisible disabilities are not just responsible for feeding, clothing, loving, disciplining, and teaching their kids. They must also advocate for their kids in a system that does not always have their best interests at heart.

One mom, who preferred to remain anonymous, described the challenge of having a 12-year-old son who has ADHD and a learning disability. She described his teachers’ low expectations, recalling an Individualized Education Program (IEP) meeting where a teacher was clearly impressed with her son’s “C”, “and how great that was ‘for a kid on an IEP.’” To compensate for his teachers’ low expectations, she says she always reminds her son that “[he] is smart and his IQ reflects that. There is no reason he shouldn’t be able to get an ‘A’ … if he is provided with the right services.” She also described a general lack of understanding of her son’s ADHD diagnosis among his teachers, which she feels causes them to set unreasonably high expectations of him in other areas, such as his ability to get organized or follow a schedule.

Delaina Baker, whose son is dyslexic and has auditory processing disorder, described similar struggles with her son’s school. She says she wishes teachers were more accommodating of his IEP. Says Baker, “It is my right to fight for my child and if you challenge my knowledge of his disability, I can assure you, I’ll have a spreadsheet, charts, and back-up data to prove it.” She says she is grateful to have found an ally in her son’s Exceptional Student Education (ESE) coordinator, whom she feels is her son’s only advocate beside herself.

Parenting is hard enough without adding other people’s assumptions to the equation. Parents of kids with invisible disabilities just want the world to know that it’s only okay to assume one thing: They and their kids are doing the best they can.

5 Sensory Experiences That Can Enhance Learning and Benefit Any Kid

Sensory experiences can help increase focus and concentration and calm anxiety and hyperactivity in all kids- not just those with special needs.

Sensory experiences can help calm kid’s anxiety, increase focus and concentration, and reduce misbehavior. Although focusing on sensory experiences is highly beneficial for kids, kids will not all react to these experiences in the same way. While sensory experiences have often been associated with children with special needs, they can help increase focus and concentration and calm anxiety and hyperactivity in all kids.
The available research suggests that incorporating sensory experiences to children’s everyday experiences can make it easier to meet the needs of even the most challenging among them. Below are five practical tips to help you incorporate sensory experiences to help your child find calm.

1 | Create a “sensory space”

A “sensory space” is a space filled with varied sensory resources where your kid can find calm. Creating a specific space has been found to help kids struggling with anxiety and anger. In one study, researchers created a “sensory room” filled with a variety of resources such as a mood lamp, a projector, aromatherapy, music, and bubble tubes. The researchers observed and recorded how often each child visited the sensory room. The results showed that the kids who visited the sensory room most had greater self-esteem and also improved emotional well-being.
A “sensory space” does not necessarily have to be a “physical space.” An alternative can be a “sensory box” where you put a variety of sensory items that your child can pick and use whenever he feels the need to. Varying the objects – smooth surfaces, rough surfaces, different smells – makes the sensory experience more fulfilling.

2 | Turn to aromatherapy

The sense of smell is a powerful sense connected to the brain. This explains why essential oils impact behavior. Research suggests that aromatherapy can have a healing and calming effect. There are different ways that aromatherapy can be used to make the sensory experience even more powerful. For instance, combining smell and touch by using essential oils to massage your child’s feet or toes can have an immediate calming effect.
The possibilities are endless when it comes to using aromatherapy but not all essential oils are appropriate to use with children. Before using essential oils with your child, inform yourself about the precautions to take and the oils best adapted to calm kids’ anxiety and hyperactivity.

3 | Provide multisensory experiences

In one study that sought to determine whether multisensory experiences helped children learn better, researchers associated different colors with music, scents, art, poetry, literature, and colored lights. They found that children who were taught colors using multisensory experiences were better able to learn different colors.
Multisensory experiences are those that enable kids to use their different senses. For example, aromatherapy play dough helps kids engage their sense of smell and touch. Remember, however, that all essential oils used with kids should be safe for them and should be diluted first if they are to come into contact with your child’s skin. Another multisensory experience could be playing soft music as your child is playing with her blocks or with sand.

4 | Incorporate sensory experiences throughout the day

Any activity that encourages children to use their senses is a sensory activity. Playing with water or grains, smelling the roses, jogging, running, playing with sand, listening to music, and dancing are all sensory activities.
Different activities respond to different sensory needs. Activities such as swinging, jumping on the trampoline, and doing aerobic exercises release endorphins that help decrease anxiety. Chewing chewy foods, sucking or blowing are different sensory experiences that may also have a calming impact on your child. Finger painting is a great sensory activity. Incorporating different activities throughout the day is a great way to help your kid find focus and calm.

5 | Use deep pressure and movement sensory activities

The pressure exerted by weights has been found to help calm kids’ anxiety and hyperactivity. For instance, weighted blankets have been found to create a natural calming effect.
Although they are frequently used with children with special needs (for example autism), they are also effective with high-energy kids. Many parents have reported benefits with their children, including better sleep, waking up more rested, and happier and more focused kids.
By exerting pressure on the body, weighted blankets release neurotransmitters that have been proven to have a calming effect on the body. Wrists and ankle weights may also have the same effect.
Activities that involve heavy work – raking leaves, pushing against a wall, pushing a heavy cart – have also been found to be effective in focusing kids’ attention and reducing anxiety.
While the information provided here can help calm anxiety and hyperactivity in all kids, it is provided for informational purposes only. If your child has a sensory processing disorder, please contact your therapist before trying the activities proposed above.

3 Ways to Make Halloween Fun for Your ASD Kid

Crowds of children, the fear of personal contact, and the idea of approaching strangers for candy can be too much for a kid on the spectrum.

When my son, Jackie, was young, I dreamed of the fun we would share over the holiday season. Halloween has always been my favorite holiday. On Halloween afternoon, we would load up the wagon with all his stuffed friends and begin the journey down the street. Most years, we only made it a few blocks.

Because Jackie has high functioning autism, the crowds of children, the fear of personal contact, and the idea of approaching strangers for candy was just too much. By the time he was in the third grade, we had to switch gears and rethink how we could make Halloween a fun memory instead of a stress-filled day. We decided on a party instead of the traditional door-to-door trick or treating. Here are a few ideas to make your ASD Halloween party special.

Movie party

Having a Halloween party and featuring a movie is a great way to celebrate while protecting your ASD child’s internal system. It’s low key but fun, and there are so many great Halloween-themed movies out there. We have viewed old-time favorites such as “The Great Pumpkin Charlie Brown” or “Curious George Boo Fest,” but there are other not-so-scary Halloween choices for older children as well. Check out “Monster House” and “Shrek” movies for an older group.

Serving treats of pizza and orange-and-black cupcakes adds to the fun, and goody bags filled with the candy they may miss out on can be added. You might also slip in some healthier options like fruit snacks or pretzels. The great thing about a movie party is that you can control when the fun ends so that your ASD child doesn’t become over stimulated. It’s also a great time to encourage socialization skills!

Hotel party

One year, I wanted to do something different. The constant ringing doorbell was becoming a real annoyance for my son. I decided to move the Halloween party to a local hotel. Many hotels understand the issues of special needs children and are happy to accommodate them. I rented a room and set up trick-or-treat stations around the hotel with the help of the hotel staff. We invited a small group of friends to rotate around the stations, collecting their candy and visiting with the staff.

My son had an easier time trick or treating in one place with staff that I could introduce him to before the party. The children ended up with a small bag of candy and small toys. After the trick or treating, we headed to the pool for a short swim and then to the room for Halloween cake. When the party was over, we had a fun time sleeping over with no doorbells.

Progressive party

Older ASD children can sometimes feel the loss of doing what they see as normal things. One idea to help them feel as if they are fitting in is to plan a progressive trick-or-treat party. We began at our house with three or four friends. I set up a small scavenger hunt in the house for the children to search for treats. They found a small bag of candy corn hidden on a bookshelf and fruit snacks behind a door.

After all the treats were found, we moved on to one of the friend’s houses where another scavenger hunt, game, or treat was waiting. Each friend had an activity at their house and the children had a fun time figuring out what awaited them at the next house.

They also enjoyed walking from house to house for a short time. Though there were still some crowds to navigate, the end destinations gave a place for decompression before heading out again. If your child’s friends live too far away, consider driving to the destinations. You can park a few blocks away so that the children can still have the experience of being out with other trick-or-treaters. The progressive party is a great way to have the best of both worlds.

Halloween can be a difficult holiday for children on the spectrum. We can make great memories even if the new traditions aren’t the same traditions that we have experienced in the past. Be creative and work with your child to make Halloween a great time filled with fun, friends, and, yes, a little candy.

Determination

This is a submission in our monthly contest. October’s theme is Determination. Enter your own here!
What a mundane word: determination. Used so casually to describe the driving force behind menial tasks. “Sure took a lot of determination to carry all those groceries in by yourself.” To me, determination means so much more. Sometimes determination is all you have.
Daylight breaks, warm rays of sun fall on your bed and face. Your eyes open and, for a moment, just a moment, you feel at peace.
Pain. Pain hits you like a truck. It doesn’t trickle in from a tap, it pours in from a waterfall. You can feel it everywhere. As it sinks in, saturating your hopes for the day, your ambitions, your solitude, it meets a wall. This wall is my determination not to let chronic pain steal my day.
Lists and lists of things that must be done…. Doctor appointments to book, parent and teacher interviews to arrange, bills to pay, a house to clean, dogs to walk, cats to feed, an Individual Program Plan to review, exams to study for, Low Vision and Autism information sites to read, and I will probably have to pee a few times.
Did I take my meds? Give my son his meds? I must have. I do it twice a day, every day.
There is the pain, still there, eating at me.
Eight things off the list. Have I sat down yet?
What can I postpone? I will get through this day. My pain won’t destroy me. I have unending determination.
Made it. Sort of. I am behind on my chores, phone calls, studies, writing, marketing, health, and organization of a future for my little family. Me and my boys. We have a happy place in this world. We are finding our way.
There are extracurricular and volunteering activities to attend to. That’s fun. Busy, but fun. We have colleges to look at, plans to make, and upcoming holidays. Terrifying, but fun. I can fit in my medical appointments, surgeries, and exams. Somewhere. As long as my son’s shunt doesn’t malfunction, as long as he doesn’t have a seizure, or my truck doesn’t break down, or….
I am determined to not let those things happen and have even more determination to handle them when they do.
The day is moving quickly. A few new symptoms. What’s that about? My son had a headache at school and his aide was being “mean.” But hey, we are down to four headaches a week. That’s great news. No homework? Even better. Let’s cook together. Life skills for the future, boys! Plus, it’s fun.
A bit hard to peel sweet potato when your back feels burned by stabbing hot pokers and your foot is half dead. Even more difficult to cook, make lunches, feed and walk dogs, deal with paperwork, and organize showers when you have more knots in your muscles than a lobster trap and the pain-induced nausea drowns your thoughts.
Let’s do this. My determination will see me through.
Finally, time to sleep. I hope I can sleep. The hours before I drift off are for reflecting, clenching the pain aside, taking mental inventory of coping resources: I kept my temper, didn’t lose my patience, listened to stories of grand dreams, computer games, Sci-fy books, girls, and heard a bit of bickering, of course.
Smiles, laughter, stories, that’s what its all about. Goals, dreams, ambitions, that’s what it’s all for. Maybe I will get my degree, go back to work full time, become an accomplished author. Maybe my son will become the biologist and fabulous family man that he hopes to be, and possibly my other son will receive all the external supports he will require to be an independent adult and marry a movie star….
We will have bumps along the way. Chronic illness does that to you. But we have made it this far. We know a little determination goes a long way.
And it carries all the groceries in, too.

Indulging My Son's Obsession With Funerals

Our loved ones know that he has autism, so they’re less likely to freak out if he does his “happy dance” at the sight of a real casket and funeral home.

My husband and I don’t have a “typically developing” child, but I know it’s pretty common for kids to develop intense interests. My friend’s son has an encyclopedic knowledge of comics. I know kids who can focus on Legos for hours, or who go who go deep with reading or the arts. It’s all good.

Our son loves funerals. He’s really fascinated by the entire affair of death and burial; it’s an obsession. He has actually never been to a funeral but that doesn’t dampen his enthusiasm in the least. As I write this, he’s listening raptly to a YouTube video of Minecraft characters crying at a funeral service. Attending funerals without him feels unfair, like making a superhero-worshiping child stay home while you go to Comic-Con.

We’ll take him to a funeral eventually if a family member dies (hopefully far in the future). Our loved ones know that he has autism, so they’re less likely to freak out if he does his “happy dance” at the sight of a real casket and funeral home. I wonder, will it be his obsession for the ritual itself or the sadness of losing a loved one in the driver’s seat?

He’s a good researcher and has discovered enough material to inform some convincing dramatic play. I bought plastic flowers at a craft store so he could have them for the “gravesite” in our living room and it made his day. He enjoys making gravestones, but eulogizing the deceased (whether it’s me or one of our pets) is where he shines. If I’m not playing dead, I participate by being one of the mourners. He’ll interrupt the eulogy to tell me if I’m not crying realistically enough or if it’s time to shriek something like “It’s such a sad day!” He has this game mastered. Just wait until he learns about cremation.

A few months ago my husband received a voicemail from a local funeral home. They were following up on a request for burial information via a form on their website. Our son had completed and submitted the form, giving them our complete contact information. We returned the call to say we had no interest in purchasing a burial package and to apologize for any inconvenience. (We’re getting really experienced on the art of awkward conversations.)   

He’d love a personal tour of a funeral home, but for now we visit cemeteries. While I’m drawn to the older section where the graves are in disarray and barely legible, he insists on looking at the newer section. He won’t tell me why he prefers it, but I’m guessing it’s due to the uniformity of the headstones and their layout. When we come across a trinket left at a gravesite, he examines it carefully and asks questions about who put it there and why. He’s a maintenance man in the making, carefully adjusting flowers and straightening flags.

Graveside moments have shown me aspects of his personality that I wouldn’t see on an ordinary day. On Veteran’s Day we decided to spontaneously stop at a local cemetery we’d never visited. It was small and had veterans from almost every war we’ve fought. As I explained this, he stopped at each grave and said, “Thank you for your service.”

Our trips also yield solid teachable moments. Last week, we saw the grave of my grandmother’s sister who died when she was 12 years old. Having recently turned 12, he was taken aback that someone his age could be in a cemetery. I explained that she died of a disease that we don’t have to worry about (meningitis) because we have vaccines, and for the first time in his life, he understood why we make him get shots at doctor visits. Hooray for having that knowledge to explain future doctor visits!

Though our son’s obsession with death and burial might seem unusual, his knowledge will be helpful in the future when we have to navigate that territory together. When the time comes, we want to be able to focus on him and not how others perceive him. We appreciate and support his curiosity, even if it pushes the boundaries of what appears to be normal or expected. That seems like an instinct that all parents can relate to.

Can Folic Acid Mitigate Autism-linked Effects of Pesticides?

New research suggests that taking over 800 micrograms of folic acid around the time of conception can help mitigate the autism-linked effects of pesticides.

Among the rows of grape-drenched vines and bars full of empty wineglasses, is my hometown: Napa, California (aka the most perfect place to return to as a vino-loving adult).
But growing up in such an agriculturally-dense valley has invisible dangers. Like the massive amount of pesticides dumped on those moneymaker vineyards, and the potential link between those pesticides and Napa County’s No. 1 ranking for the rate of childhood cancer in all of California.
Additionally, a study out of nearby UC Davis showed that “women who lived within a mile of agricultural fields where organophosphate insecticides were applied during pregnancy had a 60 percent increased risk of having children with an Autism Spectrum Disorder.”
A large body of research has shown that consuming a folate-containing prenatal vitamin reduces a child’s risk of later developing an Autism Spectrum Disorder (ASD).
But new research suggests that taking over 800 micrograms of folic acid around the time of conception can helpmitigate the autism-linked effects of pesticides.
Children whose mothers were taking the folic acid had a significantly lower risk of developing an ASD, even when the mothers were exposed to pesticides on a daily basis.
Mothers who took less than 800 micrograms and encountered household pesticides had a much higher risk – a risk that increased with repeat exposure.
Napa is just one example, but it helps illustrate a much larger picture. Many Americans are exposed daily to dangerous pesticides – both from nearby agriculture and in their own homes.
Many of these women can’t control their environmental or household exposure to pesticides, but studies like this can help put some of the power back in their hands.
It’s important to note that research like this does not determine causality. A lack of folic acid around the time of conception does not cause autism. Nor does consuming an adequate amount prevent it.
Instead, this research notes a statistical significance between the prevalence of ASD in children whose mothers had taken 800 micrograms of folic acid (the amount in a standard prenatal vitamin) compared to those whose mothers didn’t, when they were both exposed to pesticides.
This suggests that folic acid can help mitigate the harmful effects of pesticides on a developing fetus. Beyond prevention methods, the implication of research like this is potentially even greater. When cells are developing rapidly in utero, folic acid acts to assist the DNA. Understanding exactly how this happens and if/how it can help prevent ASD (among other developmental disorders) is the next step in protecting our children while they’re still in utero.
Most mothers-to-be already understand the benefits of prenatal vitamins rich in folic acid, but there can never be a shortage of studies to support its benefits. If you’re planning to conceive, research has shown nothing but positive outcomes to an increased folic acid consumption.

Ah Push It, Push It Real Good, and Other Life Lessons From “Glee”

While initially I was hesitant to allow her to watch “Glee”, I realized she was learning things that mere conversations could not impart.

“Mom, do you and Dad do the sex to this song?”
My daughter shouted this question over the blaring music during a recent spontaneous dance party. The song in question was “Push-It” by Salt-N-Pepa. At the age of 12, she has cultivated a love for music from the ’80s and ’90s thanks to her newfound love, the TV show, “Glee”.
I never imagined I would be that mother who allowed her child to learn about the birds and the bees or other important life lessons from television. Nevertheless, here I am trying to figure out how to turn “Push-It” into a teachable moment, but I can’t stop laughing.
I have never been shy about talking about sex with either of my girls. I used the anatomical names for all their body parts, much to my mother’s horror. The first time my mom heard me say “vagina” when referring to my daughters “private spot” she nearly fainted. My mom never spoke to us about such things.
Mom wasn’t a prude per say. To her credit, she did try to engage me in “the talk” during one very uncomfortable walk on a spring day when I was about my daughter’s age. I remember feeling my heart race and my hands become moist with nervous sweat as I anticipated the words about to spill from Mom’s lips. I knew they were going to be about puberty and sex. My pace increased from a casual stroll to a speed walk. Not able or willing to keep-up, my mom got the message and dropped the subject, never to bring it up again.
Fast forward three decades: I am the mom that must have those potentially uncomfortable talks with my girls. Stories of girls and boys engaging in oral sex on the school bus as early as fourth grade propelled me to be open and upfront on the subject of sex with my girls from the moment tampon dispensers existed in public women’s restrooms.
My ploy was to start early so I could ease into the taboo subject while making them believe that talking about sex was as normal as talking about what we might eat for dinner. Of course, my penchant for making everything into a joke with carefully placed sarcasm made this goal a challenge.
My older daughter took sex talk in stride and seemed to grasp the concepts. Now, well into her teen years, she understands all the innuendos my husband and I can’t resist using. We love the “that’s what she said” phrase and use it often. She laughs with us, feigning understanding of our more obscure sex references.
My younger daughter has remained more innocent and unaware. She gets that we are talking about “the sex thing,” but has no idea what we are really saying. While she knows the anatomical names for all things related to sex and sexuality, she refuses to utter them. She insists on referring to her period as “the thing.” Vagina and penis are referred to as the “girls down there” and the “boys down there.”
Of course, being the obnoxious, instigators we are, as soon as she uses these invented terms, my husband and I chase her around the house saying “penis, vagina, period” over and over as she runs, covering her ears, and screaming in mock horror. Ahh, the good times we have torturing our daughter with sex words.
Wait, who is the child?
To complicate matters more, my daughter does not just have an aversion to talking about sex. She has trouble reading and understanding social cues and accessing and using her language skills appropriately. We suspect she may be on the mild end of the autism spectrum. Though she is immature in these ways, her body is in full bloom.
Like so many girls, she reached full puberty early. Her body is curvy and lovely. If she ever realizes how attractive she really is and starts to dress and groom herself in such a way that others will notice, too, we may be in trouble. Big trouble.
Recently, we visited a developmental pediatrician who expressed the same worries. He instructed us to talk with her about sex openly and often. He spotted the same characteristics in her we recognized as worrisome. Only after knowing her for a few minutes, he became protective of her, which was sweet. We have taken his advice seriously (well, as seriously as two sarcastic, silly adults can) and talk about sex, a lot.
While initially I was hesitant to allow her to watch “Glee”, I realized she was learning things that mere conversations could not impart. Like many people on the autism spectrum, she is a visual learner. She also learns with repetition, lots of repetition. Music and movement, her greatest loves, aid in her ability to comprehend and remember. Watching these shows over and over (thank you, Netflix), which she is motivated to do thanks to the musical component, teaches her way more about sex than my words and explanations ever could.
Many important themes and scenarios are played out in “Glee”. She watches as a teenage girl struggles with pregnancy and the boys who are the “baby daddies.” She has learned about people using sexuality to entice and hurt others. She has added to her knowledge regarding homosexuality. She has learned about birth control. She has learned about broken hearts. She has learned about all the good and the bad about being a sexualized adolescent.
Inevitably, she is filled with questions about what is happening between the characters. She relays the scenarios to us, asking pointed questions. These questions lead to in-depth conversations about choice, love, birth-control, and saying “no.”
Even the less often heard topics of knowing that sex should be enjoyable, that woman should gain as much pleasure from the sex act as men, and that having sex to make a boy like you is not the best choice become fodder for dinner table conversations. My husband likes to point out that teen “boys don’t think with their brains” which is the only thing he knows for sure about the topic of adolescent sexuality.
The male lead, Cory Monteith committed suicide, which allowed us to talk about depression, substance abuse, and drug addiction. The homosexual themes have helped her understand the diversity of sexuality in the world. The show addresses marriage, bullying, and other topics that can be hard to bring-up in casual conversation.
So now, we blast music from “Glee”, and spontaneous dance parties to songs like “Push-It” break out. As my daughter claps, laughs, and dances her way through the soundtrack, she often hits the pause button as the song reminds her of a question she had about the show. I think she is starting to understand her sexuality and, better yet, her right to control her body.

The Physical and Emotional Reasons Your Kids Need a Family Dog

Just a few cold hard scientific facts why our kids are the first to benefit from man’s best friend.

When I was five, my great-aunt beckoned me close and whispered a fabulous lie to me: that animals could talk to each other only at midnight on Christmas Eve. Being a child who believed the fairy tales of dragons, knights, and fairies were true, I completely believed her. That night, I forced myself to stay awake until midnight to listen to my pet parakeets talk. Of course, I was disappointed as animals cannot speak English. However, that never squashed my intense love for animals.
Although I never had a dog as a child, I did have parakeets and I adopted the cocker spaniel that lived on my Grandmother’s farm. When my own children were old enough, I began what my husband likes to call the “Butterfly Cycle,” which is really me just filling our house with caterpillars (“for homeschooling”), two guinea pigs, and then the formal presentations to make my case for a family dog.
As my kids repeatedly watch “Pets” on Netflix, I am happy to say that I am now expecting – my pup is due to arrive just in time for autumn, my favorite season ever. And in the spirit of my intense, animal-loving excitement, I would like to share a few cold hard scientific facts why our kids are the first to benefit from man’s best friend.

Physical health benefits

Dogs and leashes go together like peanut butter and jelly. Imagine a crisp fall morning with a light fog settling as you stroll down the sidewalk with Rover. Dogs may “force” you to get out of the house and get a little bit of exercise, so naturally dog ownership might increase health due to morning and evening walks. Beyond that, dog (and even cat) ownership offers several physical health benefits:

Sleep

An Australian study, inspired by British and American research in the 80s, studied the extent of pets and overall human health. The study noted that families with pets, on average, made less doctor visits. In particular, pet owners were significantly less likely to suffer from sleep problems, such as falling asleep. I imagine that a small child (and adults) feels safer with Fido on the night watch.

Heart health

The same Australian study listed above also noted improved heart health among pet owners, especially cat and dogs. The study analyzed heart attack rates and revealed that dog or cat owners were less likely to succumb to heart attacks. This benefit is a combination of increased cardiovascular exercise plus decreased stress levels from having a companion. This benefits even kids who are, for the most part, stuck at desks all day at school. Going on a walk with their dog helps balance their exercise to sitting ratio.

Seizure alerts

For those who suffer from epilepsy, a sudden attack can leave an individual in a dangerous position when the seizure starts. Amazingly, some dogs can sense the onset of a seizure. Families with epileptic children benefit from this type of dog, who can alert them with enough time to get the child to a safe position before the seizure starts. The BBC chronicled the story of an Irish family whose Great Dane pinned an epileptic tot against the wall to prevent her from falling during an episode. Their Great Dane predicts seizures about 20 minutes before they start. ABC News also highlighted a service dog that assists in seizure alerts.

Improve verbal skills

Perhaps you’ve seen your local library hosting more frequent “read to the puppies” events? There’s more to it than just fluffy puppies – although that is a huge perk. Studies have noted that being around animals helps children improve their verbal skills by offering them a judge-free zone to work on their speech and talk to the animals.

Emotional health benefits

“They” say that dogs can sense if their owner is feeling blue or experiencing an emotional upset, and that they help restore a positive emotional environment. Dogs can also help teach valuable lessons that improve the emotional health of a child:

Teaching empathy

When my son was visiting my sister and her Foxhound over the Fourth of July weekend, Foxy quivered with each firework blast. My two boys rushed to her side and began singing their favorite lullabies to her. “We are calming her down, Mama,” they proudly whispered. This situation is nothing unusual, because pet ownership is one of life’s many opportunities to teach empathy. Children often are the dependent ones, looking to us for every single basic necessity. When children become the ones to tend to a dependent creature, they are learning to give the gifts that they have been given, from food to shelter to unconditional love.

Instill confidence

Has your child ever “helped” fold a piece of clothing, stepped back at the mangled pile of cloth, and felt so proud of themselves? Practicing life skills is an excellent way to improve self-esteem and confidence. Owning pets is another outlet for children to practice their real life responsibilities, even something as simple as filling Fido’s water bowl each morning.

Offer therapy

Animals, especially dogs and horses, offer a wide range of therapy benefits to children. Therapy dogs are known to reduce stress and anxiety, lower blood pressure, and reduce healing time. Researchers demonstrate great success with therapy dogs especially for children with PTSD or autism. Children unable to connect with a human for support connect to the dog because of a dog’s ability to convey unconditional love.
It’s hard to deny the science: Dogs bring a lot to a child’s life. I know you seasoned dog owners are laughing at me as I await my turn for midnight potty runs and the incessant chewing of a teething pup. Like life and parenting, it’s not always rainbows and butterflies. I’m not denying that someone has to learn to use the pooper scooper – but hey, that can be a life lesson in and of itself.
So if you’re considering inching your way into the pet world, consider the Butterfly Cycle.

A Family Stuck in the Autism Waiting Room

When you know something with your child just isn’t right, waiting on an autism diagnosis is nothing short of excruciating.

That feeling that there’s something “different” about your child is a familiar one to all parents. But when it becomes more than just an irrational fear, what we need most of all is honesty and support.
For too many families where the autism spectrum is concerned, however, neither of those are quickly forthcoming – certainly not based on the experiences my family has had over the last seven months.
There had been some early signs in my four-year-old son’s life that we’d largely ignored. He was slow to speak, he never really enjoyed playing with other children, and he struggled with noisy places.
But the trait of his that most powerfully pushed us toward talking to someone about it was his utter aversion to breaking from routines and expectations, and it all came to a head on my dad’s birthday.
We’d planned to spend some time at my parents’ house and then go to a shopping center so my wife could try on a new dress for a wedding. We ran out of time for the latter, so we headed for home instead.
Our son had no reason whatsoever to look forward to the dress shopping, a chore that meant hanging around in a boring clothes shop with a bored daddy. But when we got home, the change of plan led to a huge meltdown.
He screamed and lashed out when I brought him into the house from the car – loud enough so that people halfway down our road probably looked out of their windows, never mind our actual neighbors.
Once inside the house, he was clearly out of control, howling and kicking and punching and biting and, worst – and most dangerously – of all, trying to get back out of the house. I had to lock the front door. He tried kicking his way through it.
It was terrifying and heartbreaking for us. I can’t imagine what it felt like for him.
There had been other times before that, but never quite that bad or quite so obviously triggered by something that made so little sense. Some outbursts had probably just been the normal tantrums of toddlerhood. Some hadn’t.
That led to the first real conversation between my wife and I about whether our son may be autistic. That was over seven months ago. The question still remains unanswered by anyone who could officially answer it. This is why I’ve written this post with a fake name and haven’t named my wife or son. So far, we’ve told very few people about what we believe to be the case. How can we say that our son is autistic when nobody has formally diagnosed him yet?
We’ve decided that we’re not yet ready to discuss it with our own parents (for various reasons), but we’ve taken all the steps you need to take to obtain that all-important diagnosis. We live in the UK, so our healthcare comes from the National Health Service. What follows here is not meant to be a criticism of the NHS or socialized medicine, both of which I wholeheartedly support and always will.
However, autism diagnoses in the UK take far too long. They just do. We’ve been on the waiting list for an appointment to make some kind of progress in this direction, and so far we’ve heard absolutely nothing.
The timing is just plain awful because our son starts school in September. We’ve had to work with his playgroup and future school to prepare him and them for his arrival in the best way we know how.
Without the diagnosis, he doesn’t have the option of entering the class for children with additional needs. This adds an additional level of stress for what is a scary and emotional time for any family. So far, his school has been supportive, letting us visit and coming to see him at home and at playgroup. There’s been no sign of them “indulging the crazy parents who think their kid is autistic.”
That’s where the lack of a diagnosis leaves us. We think he’s autistic and can spend our time reading all about it and how to help him based on our experience, but we don’t actually know anything. Our son doesn’t deal well with the unknown, and we’re sending him out into it very soon.
Sure, we could pay for a private diagnosis, but an initial consultation costs £300. We can’t afford that much, let alone the cost of the full assessment, which can be around £800. For some families, that’s an option. For a family with two kids and only one working parent, no chance.
So, on we go. We have a son who is most likely autistic and do what we can to help him cope in a world that still isn’t made for people like him. This morning, his socks were too “curly,” so he wore his fake Crocs without any socks to go to the dentist, which was too noisy.
We’re learning every day how to be his parents in a way that makes his life easier. Sometimes we mistake things he can’t control for simple naughtiness, and quite probably, we do the reverse as well.
But we’re trying to do our best for him. What we really need is the clarity and support to help us know that we’re at least getting it right some of the time. Hopefully, that will come soon.
We’ll be waiting.

An Autism Diagnosis Made Me Rethink Saying "I Just Want a Healthy Baby"

“I just want a healthy child.” The phrase I once thoughtlessly uttered came back to settle in the depths of my mind.

I’m an incessant daydreamer. It’s easy to imagine perfect scenarios where I always say the right thing and my hair looks fantastic. My dreams allow me to right wrongs, find that pithy comeback, and save the world on a regular basis. While pregnant with my son it was easy to slide him into those dreams. I would happily hand the world-saving reigns over to him, and naturally he would place one hand on my shoulder and say, in a voice ringing with sincerity: “I owe it all to my Mother.” Then everyone would clap.
When I was asked if I wanted a boy or a girl I would say, “I just want a healthy child.” Secretly I know I sort of wanted perfection. A child to be a perfect version of my partner and myself. A child with height (I am lacking), athletic ability (again, lacking), and a heart big enough to save the world – all wrapped up with a little bit of cheekiness (my contribution). My son is tall, he enjoys hurling himself off various things and saying “ta-da!” when he sticks the landing, he loves fiercely and quickly, and is generally understood to be the epitome of a ratbag. He’s also autistic, and therefore according to general society not a “healthy child.”
A strange thing happens when your child gets an autism diagnosis. The world around you restructures itself. Your relationships shift, goals relapse and realign. The people around you reveal themselves, for better or for worse. The only constant is this kid you’re attempting to parent. He is the only one unaware of the seismic shift undertaken on his behalf. He has always been an autistic child. There was never a moment when he was not autistic. Everything he sees in the world is viewed through that lens – everything he has eaten, loved, touched, watched, and engaged with has been through the ability of his autistic brain.
And before the diagnosis, you never knew. Sure, there were issues. That’s why you began asking questions. This wasn’t the expected answer though. It seems you have always been raising a child on the autism spectrum. You just didn’t know. Now you do know, and for some reason that changes everything.
His future, once bright, is now spoken about in soft voices laced with hesitation, no more gruff proclamations of, “Well he certainly knows what he wants! Har har har!” Now he is showing signs of obsession and it needs to be managed. He needs to be managed. He doesn’t need play-dates, he needs social-skills therapy. You don’t need a drink with friends, you need respite.
There is the tick-tick-tick of early-intervention time slipping away plus he needs a signed plan and he needs it yesterday. There is a cacophony of meetings, appointments, reports, and sessions. Through all of this, your son lines things up, whispers words from beloved books over and over, and places his palm on your face when you cuddle him to sleep. Your life is no longer a solid rock – it is shifting sand and you don’t know what to do, but you can hear him breathing in the dark and you love him. You love him.
I just want a healthy child.
The phrase I once thoughtlessly uttered came back to settle in the depths of my mind. Slinking around like a guilty shadow. He wasn’t the child I imagined. Parents of autistic children are often told that the time of diagnosis is difficult. We are told it’s okay to grieve the life we’ve lost. It’s okay to grieve the family we no longer have, or the future that’s disappeared somewhere in the mire of health care paperwork. It is, essentially, acceptable to grieve the loss of a child while that child sits beside you making derogatory remarks about your knowledge of construction vehicles. Agencies handed out booklets stating grief was normal.
Yet, when I thought about it, I wasn’t grief I was feeling. It was remorse, and anger. I was never entitled to a child to complete my version of the perfect family. I was remorseful I’d ever placed that burden on him. I didn’t bring a child into my life to heal my wounds or fulfill my various forgotten destinies. I am here for him. I’m not entitled to him, but he is entitled to me. He is entitled to be loved and accepted, to have his fears and dreams acknowledged. To be a complete person in himself, secure in his worth and proud of his capabilities and talents. I was angry for what my child had lost. A boy filled with potential had regressed to various scorecards in filing systems tucked away in agencies.
Jim Sinclair, an autistic adult, said in a speech to parents of autistic children entitled “Don’t Mourn For Us” that when parents say they grieve for their child, what the child hears is that the parents wish for a different child, a non-autistic child. Imagine the pain in that realization. Sinclair went on to say about understanding and loving an autistic child: “Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.”
My son never lost his potential when he was diagnosed. There was nothing taken. He is still a boy with a bright future. However, it’s his future now, not the one I would inflict on him. There are many autistic adults who are happy and successful, who live fulfilling lives without reference to scorecards in filing cabinets. Yes, autism requires accommodations, but that doesn’t make him any less a bundle of potential than any other six year old desperately trying to feed their broccoli to the cat.
When I was pregnant with my second potential ratbag and I was asked what I wanted, I never said I wanted a healthy child. My “unhealthy” child was perfect, he deserved to be a part of the world and our love and acceptance of him was complete. I would instead, smile and say, “I just want a child.”