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.

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.

The Hallelujah Moments

It was the first time he’d ever had dirt on his nose. I know this is not a big deal, or shouldn’t be. But my kid is not most kids.

My five-year old came home with dirt on his nose – one long dark swipe down the side, like he’d spent his afternoon up a chimney. His dad had taken him to the park with his twin brother and sister. Early October afternoons look a lot like summer ones here, hot and muggy with the whine of insects, but the fact that you know cold weather is coming propels you out the door. It puts a firm hand to your lower back and shoves.

Fall isn’t easy for a kid like my son who’s in a wheelchair 90 percent of the time. The colder wind ushers in a trapped feeling when we can’t go outside as much as we’d like. He can’t run to get his blood pumping on those walks we take. I march, briskly, like a governess with my charge, rolling him along. He loves it though, pointing to people and rocks and orange construction cones placed at random on the park path. Soon enough, we will move our walks to the mall and I will join the little old ladies in their too-white Aerosoles and elastic waist khakis. I love them with their balled-up Kleenex and arms pumping, and they love my son. He waves at them and they melt, visibly, wobbling and veering from their path. We will walk our laps together. It’s not a bad way to spend winter, if I can keep myself from homing in on the Auntie Anne’s kiosk.

On this one Saturday, though, it was still warm and so when the darkness finally chased the kids inside, I clicked on the mantel lamps just above my son’s head and took note of the dirt. After a second, I let out a big shuddery breath that made my husband look up from where he was peeling shoes off the twins. It was the same noise I made when the credits rolled at the end of “Beaches,” full of hormones and ellipses. I sent up a silent hallelujah, a little shoulder shrug of happiness. It was the first time he’d ever had dirt on his nose.

I know this is not a big deal, or shouldn’t be. I know kids get smudged all the time. Like the kitchen floor, life just trudges over them in all its happy casualness. But my kid is not most kids. There’s not much room for digging in the dirt or swinging from trees from his vantage point. He’s the book-reading, video-watching, iPad-navigating savant, by choice and by default. There are no creeks and forts for him, and that’s okay. Our afternoon walks have been enough to tame the call of the wild. But for me, there is always a niggling question, like a gnat in my periphery, when I see his brother and sister run inside covered in grass stains and mulch: Do you wish that for you?

So when I saw the dirt, I didn’t grab a baby wipe right away. I let it stay for dinner. Only when it was time for bed and baths and all the rest did I send it off with a fond farewell. I did not ask how he got it. It could’ve been when my husband went down the slide with him or when he grabbed at a low-hanging tree branch on the walk to the swings or maybe it’s just dirt from the car door. Lord knows the vehicle has got enough grime inside and out to make us all look like spelunkers.

To me that smudge meant something. It meant that he’d looked up from the world of books and apps and videos to get in the muck. It meant that he’d lived out in the great wide open for just a little bit, like all the other kids who come home messy and tired at the end of the day.

I think all parents have this moment at some point with each child when they do the one thing we didn’t dare hope they’d do: say thank you after dinner, figure out quadratic equations, do their own laundry, run into our arms instead of away from them. It’s the smallest of victories that feels like the biggest. It’s this tiny step that gets us to the next.

We’ll be back in the mall soon enough, happily back at our laps. I’m glad he got this day. I’m glad I got it too. I hope there will be more once winter passes.

7 Ways to Manage Your Kids' Anxiety From a Parent Who's Been There

Anxiety is, after all, a symptom of an active mind. The key is pointing that mind power in a positive direction.

We were reversing the car down the driveway, headed off to enjoy New Year’s Eve fireworks, when my then two-year-old asked from her car seat, “How many years do you think it will be before I die?”
My husband and I looked at each other but didn’t answer. What kind of parent engages in a conversation about mortality with a toddler, a still-in-diapers kid whose mind ought to be on Elmo or the imminent pyrotechnics?
It turns out I was exactly that kind of mom, though not by choice. It’s taken me years to accept that my daughter’s question at two was not an unsettling aberration, but a preview of things to come, of the anxiety that sometimes paralyzes her and sometimes manifests as anger or depression.
Over the years, I’ve gleaned ideas of what to do (or avoid) to optimize my whole family’s health, techniques that might help other families in need.

1 | Don’t try to talk them out of it

This was a regular pitfall of mine for years. I wanted to explain to my daughter that chlorine was not going to permanently damage her eyes and that she wasn’t going to be poisoned by her acrylic paint set. When my son is worried, we reason through his fears and he moves on. But for anxious kids, the worries run deeper and are more persistent. Trying to talk my daughter out of her feelings has never helped her, or me.
As Adele Faber and Elaine Mazlish note in “How to Talk So Kids Will Listen and How to Listen So Kids Will Talk”, a “steady denial of feelings can confuse and enrage kids.” Ultimately, it can teach kids to bottle up their feelings. I’ve learned that my daughter doesn’t need correction. She needs to feel heard.

2 | Active bodies make for easier minds

When she’s feeling particularly down or anxious, my daughter is inordinately drawn to screens. Pulling her away can be a struggle, but the payoff is worth it. Physical activity gives her an opportunity to channel the nervous energy in a healthy direction. Climbing, running, even swinging on a swingset all help.
An overbooked schedule stresses her, so we minimize formal sports and favor time at the playground, hikes in the woods, bikes rides through town. If she’s busy working her muscles during the day, she sleeps better at night. Being out in nature and getting those endorphins flowing puts us all in a better frame of mind.

3 | Eat well to feel well in body and mind

Living with stress taxes the immune system. Germ season especially can be hell!
When my daughter’s feeling stressed or down, it’s tempting to give into her request for sweets or processed snacks. But as addiction expert Kathleen DesMaisons points out in “Little Sugar Addicts: End the Mood Swings, Meltdowns, Tantrums, and Low Self-Esteem in Your Child Today”, kids are especially vulnerable to the mood imbalances caused by excessive sugar intake.
When my daughter’s on edge, I do my best to pick healthy, whole grain meals and snacks. I sub carob for chocolate to avoid the caffeine jitters. Naturally sweet peppermint tea eases stomach aches caused by rattled nerves.

4 | Establish a routine (and be open to revising it)

Predictable schedules make us all feel more anchored against the stressors of life. Setting out clothes the night before can make the morning routine easier. A set time and space for homework minimizes battles on that front. Bedtime at our house is usually preceded by some reading under a comfy blanket, a cup of chamomile tea in hand.
That said, an overly rigid schedule can be as harmful as none at all, so it’s essential to be flexible and recalibrate throughout the year.

5 | Anticipate assistance, but be ready to advocate

Though my daughter does well academically, school has always been challenging for her. Testing anxiety, a myriad of interpersonal relationships, a host of adults with different rules – it’s a lot to deal with.
In trying to keep peace in the classroom, well-meaning teachers may dismiss a child’s worries, telling them everything’s fine, just go sit down. School counselors can be a useful resource and a chance to get some one-on-one time during the school day. But if the school doesn’t get it, stay the course. Mental health needs are special needs. Anxious kids may need extra help getting in the right frame of mind to learn.
NAMI (National Alliance on Mental Illness) estimates that “one in five kids experiences a mental health condition, but only 20 percent of them actually receive services.” Talk to teachers, principals, school boards. Advocate for training and resources.

6 | Know when you need professional help

This is easier said than done. I dragged my feet getting my daughter the help she needed. Though I blamed the delay on insurance complications and waitlists, behind those excuses was my own reluctance to admit we needed help.
What did it say about me and my parenting? It’s easy to fall down the rabbit hole of blaming yourself.
In “The Worried Child”, Dr. Paul Foxman provides clear advice on when to seek therapy. His checklist helped me see that it was time to reach out to a professional.

7 | Practice self care

When my daughter’s anxiety is most acute, it can be difficult to fulfill professional obligations or even get a decent night’s sleep. My own mental health ends up taking a hit. The best way to stave that off is to keep up with hobbies and be protective of personal space and time. To care of your child, you first need to care for yourself.
Though at times I’ve thought of my daughter’s anxiety as a liability, I see more clearly as the years go by that anxiety is, after all, a symptom of an active mind. The key is pointing that mind power in a positive direction.
With love and help, anxious kids can thrive.

Why Social-Emotional Learning Works

Things that happen socially cause an emotional impact and can influence learning in children.

Social-emotional learning (SEL) is a relatively new concept in teaching. The concept comes from CASEL (Collaborative for Academic, Social, and Emotional Learning). Essentially, it’s the idea that things that happen socially cause an emotional impact and can influence learning in children. Teachers are trained by the social staff within the school to develop skills to better address these issues.

If you’re a parent of a special needs child, like I am, you’re probably ready for this type of learning in your school. In advocating for my son in the school system, I have been a great supporter of social-emotional learning. Not only does it benefit typical children but it is also a strategy that should be used when forming IEPs (Individual Education Plan) for special needs children. Here’s why it works.

Social-emotional learning gets results

In studies done by CASEL, there was an 11 percentile point gain on average in students that participated in SEL. Helping children tap into their social side and learn to interact with their peers creates greater participation and makes working in a group setting easier. There are fewer behavioral problems and greater achievement overall. 

Think about what that means for children with issues such as autism or ADHD. It provides a willingness for inclusion and an openness to listen to all points of view. This also sets up special needs children for better modeling of their peers.

Destress and plug into positivity

The key factors in SEL are to teach social awareness, relationship skills, responsible decision-making, and self-management. By touching on these parts of their selves, children learn to understand one another and develop deeper relationships with their peers. They learn to tune into others’ feelings and develop coping strategies for difficult times.

When they develop these skills, research has shown that children show less depression and anxiety, and withdraw less socially. Even years later as adults, those taught with the SEL program were still able to deal with stressful situations better than those without SEL. Many of these coping strategies are the same strategies that our special needs children are taught through therapies. What makes SEL great is that every child is on the same page and they are learning these skills together.

Bring it home

The SEL program is designed to bring the learning home to the family and even to the community. It’s a program based on respect. It teaches us to learn who we are as individuals and what our needs are in the moment and beyond. Teaching how to communicate those needs is essential in life, and not every child has a home life that follows this path.

Let’s face it, we live in a busy world, full of obligations and stress. Most days, I’m just trying to get dinner on the table and homework done. Families that learn to talk openly about feelings without judgement and work toward solutions together will strengthen the connections that are already present.

Now imagine your community doing the same thing. Much of the research conducted and discovered by CASEL has shown that children involved in SEL have grown to be better workers. Many work places are also adding some components of SEL to their training platforms.

Gone are the days of negative reinforcement and corporal punishment, thank goodness. There has been so much research done in the past 20 years that shows how harmful these old ideas of parenting and teaching have been. The answer has been with us the whole time as it goes along with the Golden Rule: treat others the way we would like to be treated, even our children. The SEL program is a great way to begin.

Ask your school about it. Be an advocate for your children and push for the type of learning that involves the entire self. At every IEP meeting that I have had for my son, the same issue is always brought up: if the problem isn’t directly related to academics, it cannot be addressed. However, when I begin to point out that his anxiety over facing a class where he knows no one will create an environment where he cannot learn, they pause.

The emotional impact that our children feel daily will undoubtedly spill over into learning. Children who have difficult home lives or who are extremely introverted will experience that same emotional overspill. There are so many life situations that can play a role in how our children learn. SEL is the perfect way to address them all.

It Would Have Been Better If Kevin Hadn't Come

I think all parents worry that one of their kids is being shortchanged in some way. This fear increases exponentially when you have a special needs child.

I think all good parents worry that one of their children is being shortchanged in some way. This fear increases exponentially when you have a special needs child.
Some days it feels as though everything is about Kevin – keeping him calm, keeping him happy, or keeping him from harming himself and us. There’s not a day, not a single moment, that I don’t worry my girls are being cheated.
We just returned from Universal Studios in Orlando Florida, and what an amazing place, especially for families with disabled children. We were able to bypass all the lines and, not only did the staff allow Kevin to choose his seat on every ride, they weathered each of his outbursts as if it was nothing out of the ordinary.
I planned this trip over a year ago for Dana. It was all for her. Dana is a bonafide “Harry Potter” junky, and I couldn’t be more proud of my self-proclaimed “nerd.” She has sorted each of us into our prospective “houses.” Chris, Papa, Kevin, and I are Hufflepuffs, Godmommy and Dana are Ravenclaws, and Kayla and Grammy are Gryffindors.
I know it won’t last. Puberty is just around the corner and, before I blink, I know the robe, wand, Ravenclaw T-shirts, and Marauder’s Map will be replaced with lipstick, Teen Vogue, and God knows what else. They told me years ago to hang on to every precious moment but, like many parents, I didn’t listen until two years ago when I finally saw her childhood slipping through my fingers.
Two years ago (she was 10), I thought Dana still believed in Santa Claus. I figured it would be the last year, so I planned a vacation to Disney World on Christmas Day. When the kids woke up, the only things under the tree were suitcases and an agenda written by Santa to Dana detailing every moment of the trip. It was all for her – this last Christmas I thought she believed.
We had a great time, but when we got home, Dana sat me down and said, “Mommy, I know it was you. I wanted to believe, but deep down, I knew it was you. Thank you.”
It was one of those moments when you can actually hear your heart break. She knew I did it all for her, she knew I loved her, but my baby didn’t believe in magic anymore. I became cognizant of every moment I’d lost, because I was so busy with Kevin.
This time I wanted things to be different. “Okay,” I thought. “She doesn’t believe in Santa, but she still believes in wizards and witches, so the magic isn’t gone!” This time, I let her plan everything down to the last detail and spent way more money than I should have, but it would all be worth it because for once, everything would be about Dana and what she wanted. For once, my darling girl wouldn’t be in second or third place.
We got home yesterday and, all in all, it was a great trip. But there were moments that nearly crushed me. Everything with Kevin is hard. There were meltdowns in the park where he hit us, screamed at us, bit us, and pulled our hair. There was a tantrum in a restaurant that silenced the whole place. It seemed a thousand eyes were bearing down on us with either pity or disdain.
There was the day he didn’t make it to the toilet in time and pooped all over the bathroom floor, and Dana had to bar the entrance to the men’s room while I cleaned the mess and Chris found new clothes.
I’ve taught my daughters to be honest about what our life is like, but sometimes the truth hurts. For example, our first day in was rough. Kevin was confused, overstimulated, and extremely agitated. After dinner, he finished his desert and then demanded Kayla give him hers. When she refused, he started screaming and hitting her.
Dana’s godmother, who isn’t used to seeing him meltdown like that, politely suggested we bring him outside, and Dana responded with, “Oh you’re embarrassed? Seriously?! Welcome to my life. I deal with this every day.”
Ouch. I’d never heard her say anything like that before. But it was the cold, hard truth, and I understood exactly how she felt.
Our last day we spent swimming in the pool. Chris and I were holding Dana when Kayla swam over to us. (Kevin was with Grammy.) We each put a girl on our back, and Kayla said, half-jokingly, “It’s like we’re a perfect family!”
Translation: We’d be a perfect family if only we didn’t have Kevin.
Then there was the day I caught Dana’s Godmother and my mother talking about me. “I heard you two!” I said jokingly. “What are you saying behind my back?”
But my mother put her head down as if making a confession and said, “I was just saying how, sometimes, when Kevin explodes like this, I just have to walk away it’s so hurtful to watch. I hurt for you and for him, and I just have to get away.”
Ouch, ouch, double ouch.
As wonderful as the late night talks with Dana’s Godmother were, one night she confessed to me, “You have a very hard life. I wouldn’t want it for myself.”
I must have asked Dana a million times in four days, “Is it everything you dreamed it would be?” Every time she replied with something along the lines of, “It is, Mommy, it really is, and if Kevin wasn’t here it would be perfect.”
I can remember thinking, “You know, Dana, all the honesty I’ve heard this week didn’t hurt quite enough. How about we get some lemon juice or salt or something?”
Which begs the question: “Rachel, have you done the right thing encouraging the girls (and everyone else you love) to be honest about their feelings? Shouldn’t you be responding to all these comments with something along the lines of, “Don’t say that about Kevin!”
I’m sure there are those who would say I’ve made a mistake allowing my girls to speak so freely about their feelings and thoughts, but you know what? They don’t have to live the way we do. We’ve had to survive things most people can’t imagine. So yes, we live by our own set of rules over here, and part of that is admitting you’d rather not get slapped in the face in line for “The Hulk” because Kevin wants to go first or telling strangers they can’t go into the bathroom right now because Mommy is busy cleaning poop off the floor.
My girls speak some harsh truths, truths heavy with anger and resentment, but we’ve all learned something the hard way: When you speak those truths, it sets you free to love when loving seems impossible.
I can’t count how many times (after she said she hated him) the following conversation took place.
Kevin: “I hit you!”
Dana: With all the empathy and patience in the world, “Please don’t hurt me?”
Kevin: “I want to!”
Dana: “Okay, Kevin, if it will make you feel better, you can hit me.”
Kevin: “Sawney.”
Dana: “It’s okay, thank you for making the right choice. Let’s go on another ride, you can go first!”
And Kayla, who said we’d be the perfect family if only it weren’t for Kevin and took more physical abuse than any of us, returned every blow with a firm hug while softly whispering, “It’s okay, buddy, I’m here, I’m right here,” as she held him.
What is it she always says? Oh yes: “Bad thoughts and feelings are like weeds, Mommy. You can’t pretend they’re not there. Pull them out by the root and let them die, or they’ll kill everything you’ve worked so hard to make beautiful.”
So we’re home now. Kevin has been so peaceful and pleasant all day, obviously relieved to be where things are familiar. I ask Dana to sit in my lap, and she agrees, which is rare. She’s almost 13 now, and sitting in Mom’s lap is sooooooooooooooooo not cool.
Me: “Why did we go to Universal?”
Dana: “Because you love me, and I love Harry Potter.”
Me: “What was your favorite part?”
Dana: “Getting my Godmother all to myself in Hogsmeade and Diagon Alley.”
Me: “Was it just like you dreamed?”
Dana: “Better.”
Me: “Do you still wish Kevin hadn’t come?”
Dana: “No, I was just mad. Sometimes you have to let yourself be mad or you’ll never be happy, right?”
Me: “Right. I’m sorry he takes up so much of my attention.”
Dana: “It’s okay. He takes up a lot of everyone’s attention, even mine.”
Me: “I love you.”
Dana: “I love you more.”
Me: “Not possible.”
We’re home. Dana is in her Ravenclaw robe, wand in hand, re-reading “The Order of The Phoenix” while munching on a chocolate frog. Her friend just texted to ask how the vacation went, and she replies, “The best time I’ve ever had in my whole life.”

Why You Should Become an Education Activist

Making sure our kids’ schools fit their needs is the responsibility of every parent. Speak up. Advocate. Make change.

I am not an activist. 

I vote, but don’t campaign. I give money to causes I believe in, but don’t tell others to do the same. But in the past five years since I’ve had children in the public school system, all that has changed.

When I spent time in the kindergarten classroom and saw how cramped the space was; when I saw children were literally on the floor, under tables, crying – I talked to the teacher, then the principal. He was rudely unresponsive. So, I did some research about budgets and state law.  I contacted the superintendent, assistant superintendent, and five members of the school board.

I spoke at a board meeting, shaking with rage and nerves the whole time. I was on the local news twice, including one day when I hadn’t showered. And when all of those efforts made not one drop of difference, I moved my child to another school.

To choose a school with better chances of success in kindergarten, I asked everyone I knew about their experience. I called district offices where no one wanted to answer questions about class size. Finally, I called every elementary school in my city to find real numbers — not school averages, but how many five- and six-year-olds one teacher was expected to wrangle.

Before switching, I went to observe. I’d learned my lesson. The tone and tenor of one classroom, far from our home, was unlike anything else I’d seen. Immediately I knew it was the right place for my son.

It shouldn’t be this hard. I speak English as my first language, have my own transportation, work from home, and have a master’s degree. Even with these advantages, navigating the education system in my community was exhausting.

Fast forward a few years and my second child was set to begin kindergarten. We were at the same school where we’d found such contentment the first time around. With a wonderful teacher, we began the year. My son had some special needs – a chronic health condition – and a brilliant mind. I met with the teacher early on and together we figured out accommodations to make things work.

Despite the teacher’s best efforts, my boy was not thriving. One day I noticed he’d begun to count on his fingers, like his peers, something he’d not done since he was three years old. I recognized the need for intervention and began to confer.

I met with the principal, so unlike the first one I’d encountered. She was responsive to my concerns and came up with alternatives. Stymied by rules, she involved district administrators.  I spoke again with superintendents, even state legislators. 

I was treated by these officials with such remarkable condescension. I was told by many that my opinion did not matter, that every parent wants to think their child is special. In not so many words, the message was clear: suck it up.

The first time around, I was disillusioned and pained by how the system didn’t seem set up for student success. This second time I was heartbroken to see how nothing had changed, despite the amazing people in the real classrooms.

Something has shifted inside me over these five years. I’m up to date on state education policies, as well as national trends. I know the people involved in every level of leadership in my community, and know who can be taken at their word. I tell strangers they don’t have to take the status quo when I overhear them worrying in the parking lot.

I still hate meeting new people and hate how my voice sounds amplified through a microphone.  I don’t want to be seen as an agitator or loudmouth. But once it became about my kids, my preferences went out the window. 

I’m working with a small group of parents to get approval to expand our school. We’re hitting roadblock after roadblock. Some people want to give up, don’t think it’s worth the hassle. I get that. I just know that no one else will advocate for my children if I don’t. Special education parents changed the system over the past 50 years, fighting for every child. 

My quests may be less dramatic but the idea is the same: our kids are worth fighting for.

Life Saving Ways to Save Energy as a Special Needs Parent

Caring for your special needs child means making sure you’re caring for yourself.

The phone calls. The meetings. The doctor’s appointments.

There are additional variables at play with our special needs kids that have the capacity to de- rail us from being the parents we’ve always wanted to be. If there’s a common variable that all special needs parents would agree to experiencing, it would be that they are exhausted.

Exhausted with the day-to-day of typical parenthood. Exhausted by the relentless confrontation of our own fears for the future of our children. Exhausted by the ongoing research and implementation as we continuously seek out techniques and interventions that may help make our child’s life just a little bit easier.

This is precisely why finding areas to save energy as a special needs parent is not only of immense value to us, but also to our family. As a special needs mom and mental health professional, I’d love to share some energy saving tips that may surprise you.

Take care of yourself emotionally.

It’s likely that parenting these days doesn’t look exactly the way you pictured it. That’s OK. Acceptance is the goal, but we need to give ourselves time and space to get there.

I know there’s no time for this most days, but I’m here pleading the importance to make time. The reality is, your child is going to need 110% from you many days. A fraction of your heart, mind, and body likely won’t do. For this reason, special needs parents and families will benefit greatly from investing time to take care of the complicated thoughts and emotions you carry with you each day.

This will look different for every parent, but fostering overall awareness of our emotions and finding a healthy outlet to express them is what will keep your heart and mind open and strong to support your child.

So find your thing — exercise, journaling, meditation, or therapy. Yes, it’s certainly far easier to numb and distract ourselves with busy schedules and technology, but both you and your child are worth the intentional investment of time to take care of your own heart.

Allow others to step in and support your child and family.

This can be a difficult task if you’ve been the primary caregiver for your child with special needs, but accepting support it is no doubt for the greater good. It can be extremely difficult and anxiety provoking to let go of control of our kids (or should I say the perception of control), but if we make it a habit, it can be transformational.

Because of this very intense daily support and caregiving, special needs parents will benefit from stepping back and allowing someone else to step in. Sometimes literal separation is needed to remind us that we are a separate person with our own needs, interests and identity. Time and space to ourselves gives us new perspectives and clarity on our lives and families.

Cultivate gratitude through positivity. 

We’re now learning just how much a grateful mindset can contribute to our health and well-being. Drawing your attention to what you are thankful for, and what is going right offers a plethora of benefits including better physical health, psychological health and improved sleep

With many daily stressors of special needs parenting, it’s easy to find ourselves stuck in negative thinking patterns. Consciously shifting our thinking toward gratitude and empowerment will literally change the pathways in our brains, allowing us to feel better and be the parent we set out to be each day.

Familiarize with self-compassion. 

Self-compassion essentially means extending the same grace and compassion to ourselves as we do to others. Pretty foreign concept to us caregivers, right? We have plenty of patience to go around for our child and family, but when it comes to going easy on ourselves, we often times fall short.

“Perhaps most importantly, having compassion for yourself means that you honor and accept your humanness. Things will not always go the way you want them to. You will encounter frustrations, losses will occur, you will make mistakes, bump up against your limitations, fall short of your ideals.” –Dr. Kristin Neff

The next time you are in a stressful situation and things don’t go well, extend yourself some of the same compassion and grace you wholeheartedly offer others each day.

Find your special needs tribe. 

There is nothing as cathartic and fulfilling as sharing challenges and triumphs with other parents in your shoes who are walking this journey beside you. If feels amazing to know we’re not alone, and to have our thoughts, frustrations, and concerns both heard and validated.

A huge benefit of social media and technology is being able to network with others with similar lifestyles. Find support whether it’s an in-person support group or an online group or page where you can learn and communicate among friends.

Special needs parent: There are countless places you’ll deposit your energy throughout your day, and it’s not likely this will end anytime soon. I know you’re giving it your all and doing the best you can with what you have.

The next time you’re feeling the pangs of that inevitable energy drain, remember it may be time to turn your focus inward, and to take some of that caregiving genius and use it on yourself. In giving yourself this gift, I can only imagine what gifts you’ll also be giving your child.

Undoubtedly, the best one of all is that you’ll be giving your kids the very best version of you.

When Fear is More Limiting Than a Wheelchair

Unless he’s given the space to try, my son will learn to be handicapped by his mind, not his body. And that’s not the life I want him to have.

It’s painful isn’t it? I feel your gaze and from the corner of my eye, I see that your facial expression matches what I feel inside every single time. I see the fear as you watch and I cannot reassure you that he won’t fall and that there won’t be tears.

I see you look at me and I bet I look indifferent. I’m sitting holding my phone, seemingly engrossed in the latest Facebook drama and unaware of what is playing out before us.

I’m not.

I am absolutely gripped by fear because I know he very well may fall. I know that this is so hard for him. I know every single thought you are thinking, but I must pretend I’m not even noticing. I must become hardened to the falls and the failed attempts.

Yes, my child must fall before he can soar. It has become my job to sit back and watch my five year-old sweat great drops as he hauls his non-working legs up a flight of stairs. I must look away as he tests his limits. I have to pretend and say, “Yes, you can climb up into that chair by yourself,” while inside I can’t figure out how he would possibly have the physical strength.

And when you stand up to catch him or to help him, I will suddenly be available. Not available to help him through this task, but to stop you. It is not easy to see my son work so hard, or fall so far, but if you help him he will become reliant on that help. He will learn to be handicapped by his mind, not his body. I must do this because if I don’t, I have disabled my son.

Fear and helplessness will paralyze him more than being in a wheelchair.

Last week I made the mistake of limiting my son in an effort to protect him from failure. We were at the doctor’s office and he wanted to climb from his wheelchair up onto the exam table. I told him no, and lifted him up onto the table myself. After the doctor left, and I had transferred him back to his chair, he pointed to the table and said “Israel do it.”

I started to tell him no, because in my mind it was impossible and he would just fall. But I stopped at the look of sheer determination on his face and let him try. With pure grit and strength he grabbed the plastic top of the exam table and began to pull himself off his wheelchair up the side of the table.

Halfway up, he was dangling, and in my mind we had reached the point I was going to catch him mid-fall and place him back in his chair. My hand poised under his backside, but I didn’t touch him. I quietly said, “You can do it.”

[su_row][su_column size=”1/2″]converse shoes on handicap kid in wheelchair[/su_column] [su_column size=”1/2″]handicap boy in wheelchair[/su_column] [/su_row]

I waited several endless seconds and with a burst of strength he dead-lifted his body the rest of the way up and into a sitting position. I was completely stunned. My child had just transferred himself from a child’s wheelchair onto an adult exam table, without handholds or assistance. He just looked at me, grinned and in his emerging English said, “Israel do it!”

Israel was born with thoracic level spina bifida, which means he has no feeling from the upper waist down. Placed at birth in an orphanage, he was deprived of everything but the basics to live. He had all kinds of medical issues listed, many I had never even heard of. He was listed as a child that would never run, never dance, never walk. A child that would not be able to use the restroom on his own. A boy that was never what I imagined in a son.

We picked a child with a diagnosis that would devastate parents. But the reality is this, we did not pick out a child with a true impairment. We did not pick up a child from an orphanage in Eastern Europe that was handicapped in any way that truly mattered. We have chosen a child whose heart beats with love and kindness. We have picked a child whose internal qualities outshine any physical impairment he has. A boy who fights for independence and freedom. We have found a child that was bound by his disability in an orphanage, but when given a family and equipment, has absolutely soared.

Israel’s determination is like nothing I have ever experienced. Tasks and activities that seem impossible, he conquers. He has not backed down from the hard things and in the five months he has been home, can climb stairs, pop wheelies in his wheelchair, and transfer from the floor into his wheelchair unassisted. Every mountain that seems insurmountable is attempted with a face of determination and strength.

As his mother, I’m the one learning to let him try things that seem too hard. In the orphanage he had to fight for every scrap of worth and independence. The very things that seem so devastating about his life have actually shaped him into an incredible child. I’m the one that has had to learn to get out of his way. And it seems ironic that I once feared how he might hold our family back – might limit our choices of where to go what to do.

The opposite has occurred, and Israel has taught us not to let things hold us back. He has completely changed our parenting.

So, I ask that when you see my son struggle and I appear cold and indifferent, do not look at me and cringe with judgement. Please look my way and smile. Silently share my fear, and encourage me. Because I am raising a man. A man who needs to fall before he can soar. A man whose character and strength will run deep in his veins and will be obtained through scars, falls, and trials. I am raising a man who will get back up, again and again, because his mama said he could.

9 Concerns You Need to Share With Your Child’s Doctor

While there is a wide range of normal development, early detection of sensory, speech, and physical issues can greatly improve outcomes.

During my son’s one-year exam with the pediatrician, he happened to crawl in the exam room.

All of his crawling behaviors were normal, except that he had a funny thing he did with his leg as he moved around the room. He looked kind of like an injured dog trying to walk.

Since my son wasn’t in any pain, this odd movement didn’t initially concern my husband or me as he began crawling at the expected age and was able to get from place to place in the normal amount of time. His form looked funny as he crawled, but that seemed like a picky parent concern to us, so we thought we would wait to mention our observation at his yearly checkup and see what the doctor thought.

Looking back, I’m so thankful the doctor was able to see this funny crawl. That doctor’s appointment set off a series of events that ultimately led to my child working with therapists in physical, occupational, and speech and language therapy. 

This is why those conversations with your pediatrician are crucial. Mentioning or showing a video of a concern you have will either relieve you of that concern, or validate it and get your child on the road to early interventions. 

Here is a non-exhaustive list of behaviors to be on the lookout for since this could be an indication of a greater challenge for your child.

Sensory issues

1 | Picky eating

Does your kid not even attempt to eat something? Is dinnertime a source of frustration for you? Picky eating can include situations or behaviors where your child only eats a limited type or temperature of food, refusing vegetables and/or fruit, absolute refusal to try new foods, and has a preference for foods with no texture (creamy carbohydrates like ice cream, crackers, and fruit snacks, are typically preferred in our household).

2 | Constipation

Constipation can be a sign that your child is not eating a balanced diet, even though you may be doing everything you can to get your child to eat. 

3 | Easily upset by messy clothes

Drops of water on your child’s clothes, glue on their hands, and a constant need to wash their hands can be signs of sensory disregulation in your child. While every kid can be upset at some time or other, take a moment to observe your child when they are near other children doing the same activity. Are the other kids upset by the glue on their hands? It would be worth mentioning to your pediatrician if you are often finding your child is the only one upset.

4 | Crashing into objects on purpose

If your kid likes to crash into things this could be a sign they are sensory-seeking. Take note of the times they crash into things, often these kids are not typically hurt by these incidences so they may not be on your radar. 

If this is a concern prepare a list of the times and places they crash. If it is only in one setting, like the park, they may just be blowing off excess energy. If you’re finding it’s at the grocery store, your house, grandma’s, and church, you might want to say something to your doctor. 

Speech issues

1 | Picky eating

When my daughter (both my kids received early interventions) was assessed for occupational therapy due to sensory regulation issues, her picky eating came up as a concern. Picky eating can have a sensory component or can be caused by weak mouth muscles. This led to a speech evaluation and therapy for my daughter. 

2 | Repeating words or phrases

Don’t mix this one up with stuttering. My daughter received speech therapy as a tot, which was a surprise as she was a chatterbox, clearly articulating every phrase uttered about a wide variety of things. One area that stood out as a concern was that she would repeat a question or comment two or three times. For example, when asking to go to the library she would say:

“Can we go to the . . . Can we go to the . . . Can we go to the library?”

Being so close to her every day, I grew accustomed to this way of speaking and didn’t notice that my daughter struggled with a word-finding issue, not being able to think of the word she wanted to say. 

If your child seems to struggle with finding that one word, or it seems like words are always on the tip of their tongue, take note of the times and places this may happen. Is it only occurring when they are really excited about their favorite toy? Maybe it’s because they’re tired. Either way, discussing a possible speech evaluation might be worthwhile. 

Physical movement issues

1 | “W” sitting

If your child sits with their butt in between their legs on the floor, they are sitting in a “W” position. This is not a good position to constantly sit in as it puts unnecessary pressure on their hips. “W” sitting is also a sign that the child’s core may not be supporting their body as it should. Telling your kid to change their sitting position is a good start, but keep note of how often he or she sits in this way. 

2 | Later walking

Both of my children started walking at 15 months, which is the outer limit of the “normal” age range. On its own, this was not a concern, but since my children had other delays in their development as well, it was information that I made sure to pass on to the doctor. 

3 | Buddha Belly

Little baby bellies are adorable. As your little one reaches various physical development milestones, all areas of their body should be coordinating together, causing the cute little belly to go away. If your child continues to have a pronounced belly, it could be a sign that their core abdominal muscles aren’t working in coordination with the rest of their body. This one would most likely show up as a concern after two years of age. 

Each of these concerns on their own are most likely little quirks of your child. If, as you read through this list, you’re finding that a number of the issues mentioned describe your child, jot a few notes and take some pictures to share with your child’s pediatrician. 

At the very least the doctor can give you an explanation or share ideas for you to work on at home. If there’s something to be concerned about, though, they will send you on to the proper specialist for an evaluation. 

My children have received services from a variety of therapists for years. I am so thankful for the support of these individuals because my children love the individual therapy time to play on some amazing equipment and I’ve received many wonderful and helpful tips to better support my children as unique individuals.