I Have a Son With Autism and Don’t Know What’s Best for Him

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Have you ever been thrown into a job that you were completely unqualified to do, but had to do it anyway? I know that describes parenting in general, but it’s been extra obvious to me lately as we continue to navigate Charlie’s diagnosis and what that means for him.

The thing about autism I never realized before now is that there is no “autism doctor.” There is no specialist you can go to for regular check-ups. In reality, there is an unending list of therapists with varying specialties and a thousand methods to address the challenges that come with the disorder. And don’t even get me started on the insurance. There is literally everything from dietitians, physicians, teachers, therapists, and even swim instructors, camp directors and horseback riding programs, all toting their methodology as being best for children on the spectrum.

Where do you even start? What is right for your child? I’ll be the first to admit I have no idea what is best for my child. I don’t know what he needs; I don’t know how he’s feeling because he won’t or can’t tell me.

While we wait for his medical assistance paperwork to be approved, all we can do is try to support his anxiety and behaviors at home. The confusion never seems to end though. Is this because he’s 4 and 4-year-olds are unruly at times? Or is this autism? Should we challenge him on XYZ, because it’ll help him grown and learn? Or will challenging him trigger a panic attack? I might as well flip a coin, because your guess is as good as mine.

A truth I can’t seem to get through my head is that it doesn’t matter what typical development looks like anymore. Typical is not necessarily typical for Charlie. Sure, he’ll adhere to some trajectories, but for the most part, he is going to be on his own path through his own forest. Maybe my frustration isn’t frustration at all; maybe it’s the fear that we will lose him in that forest.

As the past several months have gone by, Charlie has started to shut out activities he once enjoyed like puzzles, Legos and coloring. He spends an obsessive amount of time each day focused on letters, spelling, writing and pointing out letters.

Most attempts to leave the house have turned from resistance to sobbing meltdowns. Over the past few weeks, he’s developed a few new behaviors that my friends have suggested could be anxiety from moving or because of his sister Ginny’s surgery. It breaks my heart to know he’s hurting or confused, but he doesn’t know how to process or communicate it.

This is where I feel unqualified for this job. I don’t know how to help him right now. I’d like to think that getting medical assistance or reaching out for therapeutic staff support will be the magic bullet, but I know it won’t be. It’s only part of the equation.

So much of this has to do with us, my husband Jeff and me, realizing and accepting that for Charlie, his world is completely normal and any insinuation contrary to that comes from us and others around him. Even if I can’t do anything else right now, I need to keep reminding myself of that.

A version of this post originally appeared on All Four Love.

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How This High School Student With Special Needs Broke a School Record

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This high school’s prom season had a record-breaking moment.

Katie Shipley is a senior at Southridge High School in Beaverton, Oregon. Shipley, who has a rare chromosome disorder and a form of dementia, was recently voted prom queen, USA Today reported. After Shipley told some people she wanted to be nominated, several of her friends began to secretly campaign for her on campus.

Shipley won with more votes than ever before in the school’s history.

In the moment before she was crowned, the crowd chanted “Katie!” over and over.

They made me feel happy,” Shipley told USA Today. “I love being the prom queen. I just love it.”

Watch the moment Katie’s victory is announced at the 0:53-second mark in the video below:

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What I’d Change About the Way My Mom Treated My Disease

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“I remember being so curious about your condition in high school, but too sheepish to ask you. You inspired many investigative diagnostic queries into my mother’s medical texts, and as a result, I learned a whole hell of a lot about many disorders, none of them being the correct one! I wanted to know what you were going through, what it was like to be you. Was it painful? Your ravaged skin seemed like it would be painful even to a tender touch.”

This is an email I recently received from a woman I went to high school with 23 years ago. I had no idea she even knew who I was, as we never spoke to one another. Her words perfectly illustrate why I want to offer advice to parents of children who have visible or invisible issues that make them notably different from their peers.

In 1985, I was diagnosed with scleroderma at age 10. My mother shared minimal information about my disease with me and told me not to tell anyone about it. I love my mom and am eternally grateful to her for raising me. But I do think she made a mistake in her approach to my disease. She had her reasons for her decisions, which she now readily admits were flawed. Like many parents, I think she wanted to deny there was anything wrong with her daughter. If she denied my disease with fierce devotion, maybe it would go away.

My mom’s plan not to discuss my disease was half-baked at best, as demonstrated by the photos below.

Here I am at age 10. This was taken just months before my formal diagnosis.
Here I am at age 12. I’m not purposely posing with a bent arm to be trendy. My arm was permanently contracted in that position.

It’s difficult to ignore such a potent physical metamorphosis. My disfigurement aside, there were so many things I couldn’t do that set me apart from my peers. The bottom line is that ignoring something does not make it less real. I was not equipped with the tools to accurately communicate information about my disease. It took me until age 40 to develop a solid and confident response to the whispers that have followed me around for the past three decades.

Here I am at age 16. Notice my fabulous toothpick legs and super cool tree limb arms. Guys were banging down my door to date me.

My advice to parents is to be open about whatever your child’s issues happen to be. Children take cues from their parents. If their parents are hesitant to openly discuss important topics, they will grow fearful of them and the “secret” will fester. Don’t underestimate the toxicity of secrets. Even my best childhood friends knew very little about my disease. Simple questions would trigger fearful tears from me, so they learned quickly not to ask.

Before I became a reading specialist, I was a fourth grade teacher. Each year, I had several students who fell into the “notably different from their peers” category. Some parents forbade the school to talk about their child’s differences with the class. They claimed that they wanted their child to have as normal of an experience as possible. These parents loved their children with fierce intensity and did not want them to be hurt by labeling or negative stereotyping. Of course, I respected their wishes and did not violate their request.

Other parents were open to coming in and sharing information about their child with my class. My students sat on the floor in a circle surrounding the parent speaker and were given the opportunity to ask questions and learn. Sometimes the child wanted to be present for the conversation and even lead the discussion. Other times, the child chose not to remain in the room while the dialogue occurred. Over the years I had parents talk about autism, cerebral palsy, Tourette syndrome, ADHD, peanut allergies, hearing impairments and more. Without exception, these discussions led to deeper understanding and empathy from the students. I only wish I had been brave enough to start off these discussions by first telling my students about my scleroderma and explaining why I looked different. This remains one of my hugest regrets, as I think it would have brought comfort to so many of my former students.

Parenting a child with an invisible or visible condition can present extraordinary challenges. Every circumstance is different and must be carefully considered by those who know and love a child best. Some parents may argue that they don’t want to call further attention to their child or cause them to feel insecure. I’m willing to bet that 99.9 percent of the time, that child already feels quite different. This is strictly based on my own childhood experiences and what I’ve observed in my 19 years of teaching children; I’m no child psychologist.

If I could turn back the clock, I’d want my mom to do this: come into my childhood classrooms each year and talk to my peers about scleroderma. I think it would’ve demystified the rumors that surrounded me and allowed me to be comfortable in my thick skin decades earlier.

My mom is a wonderful lady who has overcome tremendous obstacles in her own life. We’ve all made mistakes, and my purpose in sharing this is not to publicly shame my mother. Instead, I hope to convey the importance of open and honest communication about tough topics and maybe even change some parents’ approach to disclosing information about their kids with visible and invisible conditions.

A longer version of this post originally appeared on Comfortable in My Thick Skin.

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The Most Valuable Tool I Have as an Adult With Sensory Processing Disorder

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If you asked me which tool is the most valuable to me as an adult with sensory processing disorder (SPD), I’d say without a single moment of hesitation: my husband.

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This is saying a lot. I’m a woman known for her deep, inane dedication to her furry band of finger-friendly fidget friends (yes, they have names and distinct personalities). I feel completely unclothed and unfettered without my trusty Wilbarger brush by my side, cloaked in the inconspicuous wraps of a floral makeup pouch. As a psychotherapist, I’m a huge proponent of deep breathing and visualization techniques, and I frequently slip away from the midst of large, raucous social gatherings to collect my breath and thoughts. I refuse to leave the house without a pair of blue-tinted buddy-cop-comedy sunglasses tucked into my purse. I’m clearly a quirky and interesting person.

And yet, in a single adult-sized male, fringed with a surprisingly robust rust-toned beard and kind eyes, exists the most comprehensive sensory tool in my immediate sphere. My husband is a squeeze-machine-meets-service-dog with patient, strong arms and fingers that have narrowly avoided the puncture of my proprioception-hungry teeth more often than I care to admit. He’s a warning alarm and a mirror when my eyes glaze over and a secure escort when my field of vision turns to haphazard streaks of sharp, incomprehensible brightness and sounds become meaningless. He’s never, ever judgmental about my SPD needs. He slices. He dices. He makes me want to write an infomercial.

Together, my husband and I jokingly refer to him as my expert handler, like a wrangler who keeps a pacing tiger at bay or a trainer who soothes even the most temperamental boa constrictor – except instead of taming roving wildlife, he tends to me and my sometimes (OK, frequently) stubborn neurology.

We’d been dating for just under a year when I met with an occupational therapist for the first time and received my diagnosis. It might have been the deep pressure brush the OT pressed into the palm of my hand or the tangled bucket of small toys she proffered – perhaps it was learning that my unyielding urge to flee the flash and thump and undulation of busy spaces had a new name – but that night, I was rapturously giddy. My husband, then my boyfriend, found me sprawled on my red couch, mid-giggle-fit, completely intoxicated with relief as the weight of 28 years of self-doubt and strangeness began its slow drain from my system. He learned that evening how to brush my back and help me quell the jagged surge of residual sensory input.

Two months later, he would kneel before the very same couch and present me with an engagement ring. SPD be damned. In time, he’d see me at my best: I’d stride across the stage, solo, to accept my Master’s degree, beaming, momentarily unhindered by the applauding crowd gathered in the echoed chapel. He’d wave from the middle row, flanked by my ever-supportive family. We’d all retire afterward to the celebration thrown by the University. I’d bend the ear of my favorite professors and join my peers in countless photographs, my smile spread ear-to-ear.

He’d see me at my worst: My already overly-alert and in-tune body suddenly thrust into sensory overdrive as I struggled with what we now realize was a vitamin deficiency paired with a particular food sensitivity. (Leave it to an SPDer to manage such perpendicular, yet simultaneous, internal health feats.) For weeks, my heart was a propeller; my flesh felt flush with the ceaseless, tiny march of invisible wingless insects; my eyes stung and swelled with tears; and I startled with every punishing word that emanated from our television. I could not bring myself to the peaceful doorstep of sleep. It felt as if my entire body was on fire. My husband watched at first, powerless, unsure of the best tactic to take in the face of my restless writhing and acute sensitivity. I don’t know what inspired him one night, but I remember peering up through a thick fog of malaise to see him hovering above me, and then he leaned downward and pressed his entire body, from head to toe, against mine. My handler, this wacky, clever man, had transformed himself into a powerful human weighted blanket. My body fought back against his frame for but an instant before it sunk into a temporary calm. It felt like the first gasp of crisp air after coughing up pool water.

People say love is this, love is that. Let me tell you: love is the drape of skin and bones, of one body across another, when nothing else will suffice.

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I’m not saying life is perfect. Nothing is further from the truth. As an adult with SPD, life is more of a three-legged race in which all tied limbs belong to you. It’s an invisible birthday obstacle course lacking in layered party cake. It’s like living with a shy Yeti who insists on preparing every meal from scratch in your pajamas. SPD is nonsensical and moody, elusive and effusive. It’s a complex beast that sometimes defies even our last elusive bastions of self-worth.

It’s in these moments that we all must set aside ego and questions of personal ability and unfathomable strength. We must return to the schoolyards of our minds and touch base. We must grab the hand of someone who helps us makes space for our three-legged Yetis – whether this is a partner or parent, an old friend or the soft-spoken neighbor. This need knows no age boundaries.

I’ve had the great honor to engage with numerous adults with SPD, and each person has expressed to me how crucial a deep, trusting relationship is to their sense-of-self and well-being in this sometimes haphazard world of shrill sirens, foul smells and socks with intolerable seams.

I’m thankful for the sensory pleasures in this life I’m living. I love the smooth glide of softened stick butter between wooden spoon and ceramic bowl as I prepare a fresh batch of chocolate chip cookies — the smell as dough becomes dessert in the oven. I relish the physical stability I feel with each stride of my morning elliptical workout routine and the spring of my feet against a trampoline. I’m delighted by my father’s lively laugh, my mother’s gentle embrace and the genuine joy in my sister’s voice when I pick up the phone and say hello. I savor the feel of warm, lavender-perfumed bathwater against my form.

I’d be lying, though, if I didn’t say I was most thankful for my husband, the stubborn, silly, patient man – my judge-less and willing handler – and his intrinsic ability to help me navigate through my SPD life.

Ultimately, it’s nothing I can’t handle alone, but it sure is nice to have company.

This post originally appeared in the spring 2014 issue of Sensory Focus Magazine.

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5 Essential Tips for Parents Starting the Autism Journey

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My son was not diagnosed with autism until he was 5 and a half. He has a high functioning form of autism known as Asperger’s syndrome. For some people, a diagnosis can be sad moment. For us, his diagnosis was a relief. We finally knew what was wrong and how to approach it.

I have learned quite a bit in our four years post-diagnosis, but there is always more to learn. I think the very beginning is the hardest part. So here are some tips for those of you just starting the autism journey.

Tip #1: Don’t be afraid of the diagnosis.

Having a child with autism is not the end of the road. You need to do what you have always done: adapt to the situation. Yes, certain things will have to change, but now that you have a clue what you are dealing with, the changes are more readily known. Adapt, live and love.

Tip #2: Don’t believe everything you read, hear and see.

I fell into this trap at first. I was given books, sent links to articles and listened to stories from doctors and on forums. Don’t do it. Just don’t. At least not right away. No child with autism is like another, so all of the “advice” people give you might scare you and stress you out. Nobody knows your child like you do, and now you have another layer to get to know.

Tip #3: Do start looking into programs that can help.

There are a lot of programs that can help children with autism and their families. I’m talking about beyond the doctor. Local play places sometimes hold sensory nights for kids with special needs, plus there are wonderful OT groups, respite (help for parents) programs and PCA programs. There are also grants and more available. The list grows every day as the awareness does.

Tip #4: Prepare yourself for questions and judgmental stares.

I can’t count how many times someone has asked me, “Are you sure your son has autism?” A lot of people fall into the cookie cutter trap. They think if they’ve seen one child with autism that they’ve seen them all. I get questioned all the time. It comes with the territory. I mainly get questioned by family and friends. If your child has a more severe diagnosis, you may get questioned by complete strangers.

The judgmental stares happen daily. When my son shrieks in excitement because a store carries blenders. When we eat out and he has more food on his face and shirt than my 3-year-old. When he can’t figure out if he should push or pull a door or how much force he needs to use. When I bend down and give him a stern warning, through gritted teeth, that he needs to knock it off. People stare. People judge. Just perfect your fake smile or if you are like me, your major stink-eye!

Tip #5: Your child has autism, but autism doesn’t have to have your child.

We set expectations, goals and rules for our son. We know it can make certain things harder for him, but we know he can achieve whatever he sets his mind to. I know that my son is capable of great things, so I don’t want him to be defined by his diagnosis.

Again, adapt, live and love.

A version of this post originally appeared on BecominNeurotic and The Mad Mommy.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Family Allegedly Raised $187 Million for Cancer Patients, Spent It on Themselves

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The Federal Trade Commission says a family in Tennessee raised $187 million since 2008 through various cancer charities in all 50 states and then used a majority of the money “to buy themselves cars, gym memberships and take luxury cruise vacations, pay for college tuition and employ family members with six-figure salaries,” the Associated Press reported on Tuesday.

According to the AP:

James T. Reynolds Sr., his ex-wife and son raised the money through charities including The Cancer Fund of America in Knoxville, Tennessee, and its affiliated Cancer Support Services; The Breast Cancer Society in Mesa, Arizona; and the Children’s Cancer Fund of America in Powell, Tennessee.

The FTC and all 50 states have now filed a federal lawsuit against the four charities, according to The Knoxville News Sentinel. Tennessee Secretary of State Tre Hargett said this is the largest charity fraud Tennessee has ever been involved in.

For more information on this story, watch the video below:

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