What You Miss When You Call a Child With Autism a ‘Public Nuisance’

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“You have to stop hitting your head on the walls. If you do, they’re going to make us move,” I said, crying, trying to help my son calm down, desperate and not knowing what to do.

He was 8 and having meltdowns every night after school.

We had already received complaints from our neighbor in the complex. We received notes from the landlord with cease-and-desist orders, threatening eviction if we didn’t get the noise under control.

I was terrified. I was ashamed. I was sure it was my poor mothering causing this. And I was sure I was the only one.

Two years and an autism diagnosis later, we were living in a home instead of an apartment. The neighbors were further away now, and we weren’t sharing any walls.

But my son’s meltdowns were much more violent. Holes in walls, windows smashed, books thrown out the window onto the front yard – I was still terrified. What if they call the police? What if the landlord isn’t as understanding as he seems to be? What if my son continues to escalate?

The behavior began to seep into our public lives, too, outside of the bashed-in, busted-up walls of our own home.

Throwing a board game in Target, hitting a little old lady and turning my blood to ice. Hitting one of his friends in the head because he was being too loud in the pool. Kicking and denting our car while we waited for the meltdown to pass on the side of the road. Breaking our windshield in front of his 9-year-old friend. Hitting me, kicking me, pulling my hair, biting me – every time I tried to restrain him and keep him from damaging property, or worse, hurting someone else.

I felt frantic all the time. I carried his diagnosis papers with me, prepared to show them to a police officer or security guard, all the time. I cried in pure exhaustion and desperation. I worried my friends would stop bringing their children around us, and that we would be alone, all the time. And I searched for an answer, for relief, for anything that might bring some level of help.

Last year, neighbors of a child with autism filed a lawsuit alleging that the boy was a “public nuisance” and that his behavior was having a “chilling effect” on the local real estate market. According to ABC7 News, “the suit claims the couple did not do enough to prevent their son, who has autism, from assaulting their children, as well as other people in the neighborhood.” Not only was the lawsuit filed, but a Santa Clara County Superior Court judge issued a preliminary injunction against the parents to ensure their son doesn’t strike, assault or batter anyone in the neighborhood or their personal propertyThe parents, after seven years in their home and neighborhood, moved.

There is so much media lately around autism awareness. And I think it’s good. I think it’s really good.

And I think what I want more awareness of is this –

Behavior, for any child is communication.

Behavior for a child with autism who has trouble communicating at all might be his only form of communication.

The behaviors this judge issued an injunction against, that this judge required the parents to shut down, are an element of autism itself.

Assuming that a parent could simply “parent better” and stop it makes me feel tired, sad, desperate and angry.

Because no one wants to ensure their child doesn’t alienate the neighborhood, hurt other children or sit on cats more than the ones who love him. No one is working harder to find help, seek therapy, investigate options, avoid play dates, stay alert at the park and physically intervene when necessary than the momma who is terrified for her child.

This little boy has autism.

My son has autism.

It affects almost everything we do and every decision we make.

There is nothing we can do to change that simple fact, nor would we.

Because the behaviors these neighbors and that judge are litigating against are only a part of what autism is in our families. The tough part.

If you only focus on the behavior, you miss so much more.

My son has autism.

He has been violent and destructive at times, yes.

He also has been a good friend, always willing to help someone when they need it.

He has been a teacher, to his younger brother, to his friends, to me.

He has been recognized as a genius, able to comprehend advanced, complex subjects as if they should be obvious to us all.

He loves well and with abandon.

He shows me every single day what courage looks like.

He is loving, brave, strong and smart, and his behavior can be out of control sometimes.

He is all of these things.

He is a human being. Not a monster. Not a nuisance. Not a lawsuit.

I believe it is the humanity of autism that was lost in this neighborhood.

And that is a loss for us all.

Follow this journey on Not the Former Things.

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Child Cancer Patient Who Loves Spider-Man ‘Saves’ Entire City From Evil Villain

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Mable Tooke loves Spider-Man.

The 6-year-old resident of Edmonton, Canada, has been undergoing chemotherapy since she was diagnosed with leukemia in 2013, the National Post reposted. Mable is now nearing the end of her treatment and her prognosis is good, but the medication can still be a drag on the child. So when the Children’s Wish Foundation of Canada offered to grant Mable a wish, family and friends jumped at the chance to allow her to become her own version of her favorite superhero — SpiderMable.

On Monday, September 28, SpiderMable had a very special day. Her day involved everything from zip-lining through the air to helping the police rescue NHL team Edmonton Oilers‘ captain Andrew Ference.

It all started in the morning when a fake local news broadcast shown to SpiderMable detailed the kidnapping of Ference and called for her help.

There was even a cry for help from Ference’s daughter to SpiderMable:

SpiderMable was up to the challenge.

Next it was off to meet the mayor to discuss the details of the case.

Then, to her surprise, Spider-Man showed up to help out.

The two of them even had their own theme song.

Next, SpiderMable and Spider-Man flew through the air on a zip-line on their way to a rescue.

She found some clues at the Edmonton Valley Zoo.

SpiderMable was finally able to rescue Ference and defeat the evil villian Mysterio. She sprayed him with silly string and put him in the police van in front of a cheering crowd.

The day was a huge success with onlookers and Mable alike rejoicing. Neil Tooke, Mable’s father, said he was tearing up throughout the day.

It’s an opportunity for her to just forget about the hospital, forget about procedures,” Tooke said, according to the Edmonton Journal. “Just be a kid again.”

Check out the video below for more on SpiderMable’s big day:

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4 Things I Want People to Know About My ‘Medicated’ Child

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I would love to tell you about my son — about his kind heart, wild creativity, love of science and his compassion for animals down to the tiniest insect and earthworm. To know him is to love him. He’s an incredible kid.

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My son also has autism. And sensory processing disorder. And obsessive compulsive disorder. And a tic disorder. And anxiety.

Any one of those things would be enough to interfere with his daily life, his ability to function and his well-being. All of them combined make him an anxious, sleepless, aggressive, violent, depressed, anti-social child who has trouble with self-esteem while grappling with obsessive thoughts and compulsive behaviors. Societal rules he has a hard time understanding and sensory input he has a hard time handling assault him from the time he wakes up until the time he goes to sleep.

Part of the reason my son part of the reason my son has OCDdepression and other mental health issues is because he has a chemical inbalance of serotonin.

Serotonin is a chemical found in the human body. It’s a neurotransmitter, which means it carries signals from and within the brain, as well as other parts of the body. It’s believed by researchers to contribute to well-being and happiness. And my boy’s body doesn’t produce enough on its own to effectively contribute to either. So he now takes a medication to help his body produce serotonin in a way it can’t on its own.

Here are four things I want you to know about my son, who happens to take medication for his mental health and well-being:

1.  My son is not a “zombie.”

I’ve seen and heard so many people talk recently about today’s children being “over-medicated.” I’ve seen educated and seemingly rational people calling other parents out on social media for “medicating” children to avoid being a real parent. To them, I say this: My son’s medicine doesn’t make him a zombie. We’re not doping him up on something because we can’t control his behavior. After exhausting all available options to help him with his diagnoses, we (his parents) along with a psychiatrist with many years experience in childhood mental disorders, made the decision to try a medication that treated the symptoms of his diagnoses. And thus far, it’s working beautifully. No, we’re not throwing him a handful of narcotics each morning to keep him “out of it” so we don’t have to deal with him. He’s bright and articulate. Most days, he’s a joy to be around. He is helpful, empathetic and pleasant. Even more so now that his brain isn’t constantly on red alert — fighting the compulsion to organize his surroundings to get rid of the nagging, anxious thoughts that run like white noise in his head all day. He’s able and willing to engage in the world rather than hide from it.

2. Medication is not a silver bullet.

My son feels better when he takes his medicine. He’s more regulated and less anxious. His brain is quieter so he has an easier time focusing, rather than becoming stuck on “what-ifs.” His emotional outbursts and violent episodes have decreased tenfold after starting medication. But there is no silver bullet. Those episodes have decreased, not disappeared. He participates in different type of therapies and classes to work on various skills several hours a week. I still have to watch him like a hawk in case he becomes overwhelmed and bolts. I monitor his peer interactions from a distance because he doesn’t yet understand the difference between children being playful and children bullying him. He’s vulnerable and emotionally immature. Medication will not fix that. He will have to slowly learn and grow and one day, maybe, he will understand those social nuances. The pill he takes is not intended to fix him, but to allow him to work on being his best self. Which leads me to my next point.

3. Medication is not “fixing” him.

He’s a 7-year-old boy. A human boy. Not a piece of furniture. He is not broken, and therefore, does not need fixing. Even if he did, his medication is not made to “fix” broken people. Much like insulin does not “fix” diabetes. A diabetic doesn’t take an insulin shot to cure himself of diabetes, but to control the symptoms the disease causes. Medication is not a glue holding my son together, nor it is a crutch holding him upright. It relieves some of the anxiety, the panic and so many other co-morbidities. Medication gives his overworked brain some breathing room to remember sensory strategies and calming techniques when he finds himself in sensory overload.  Medication is not fixing his diagnoses, but helping him navigate them successfully.

4. A child on medication does not equal lazy parents.

Knowing our son has a better handle on his anxiety and compulsive behavior does not mean we’ve been able to get lax in our parenting. Medication has not magically made our lives a cake walk. Far, far from it. If anything, we’re more vigilant. In fact, we now also monitor him for side effects, adverse effects and have to pay attention to things like whether a cold medicine might interact with his current medication and put him in danger. We’re still highly involved in his therapy and his progress. We’re still constantly aware of his state of mind and well-being. We still keep track of what he eats and watches on TV. We still do everything we can as his parents to ensure he’s happy, content, kind, compassionate and successful in his daily life. And then some.

Medication for mental illness is not something to be demonized or vilified. Nor should it be worshiped and hailed as a cure-all. It is a tool. Just another thing in my boy’s arsenal of coping mechanisms and techniques to ensure he reaches his full potential and not only functions successfully, but happily. Maybe you knew these things about mental health medications. Maybe you didn’t know any of them. And maybe — just maybe — this post will make someone stop and think before they pass judgment on a parent who has a “medicated child” like mine who will eventually become a “medicated adult.” It’s not a weakness or a crutch, and it’s high time we end the stigma.

Follow this journey on Where’s Mommy’s Coffee and check out more on Lauren’s Facebook page.

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8 Things I Wish I’d Known When My Son With Special Needs Started School

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The school day has hardly started when my phone rang. “You need to come and get your son,” the principal told me. “He ran out of his classroom, and I just had half our teachers looking for him before we found him hiding near the gym.”

I got that call just a few weeks after my son, Peanut, started first grade. But I also had many versions of that call when Peanut was in kindergarten and grade 2. Sometimes it was because he’d left the classroom; other times it was because he was throwing things and disrupting class. And then we got the call saying our son had left the school grounds. While my husband I debated who would cancel the morning’s meetings so we could go and retrieve him, his support worker lost sight of him and we had to call in a police search.

Those phone calls may sound familiar to any parent who has a kid like Peanut. While his 99.99 percent IQ might sound like a blessing, in practice it comes with a whole range of challenges that are not uncommon among gifted kids: anxiety, ADHD, sensory processing disorder, fine motor skill lags and a tic disorder. The day he disappeared, we finally concluded the mainstream school system wasn’t a fit for him.

But we spent three agonizing years coping with call after call, and meltdown after meltdown, before we gave up on public school and switched to homeschooling out of desperation. Here’s what I wish someone had told me during those first agonizing weeks of kindergarten.

1. This is even harder for your kid. When you’re getting emergency calls from school that force you to leave work, and facing daily battles over getting to school in the first place, it can feel like the school struggle is your struggle. But if Peanut is having such a tough time with school that it’s disrupting your work and family life, then he’s probably having an even harder time than you are. Approaching this with empathy  —  rather than as something your kid is doing to you  —  will really help build and preserve the relationship you need if you are going to figure it out together. And I know that is incredibly hard to remember at the moment you’re dragging him screaming into class so that you can make your urgent 9 a.m. client meeting.

2. School isn’t life. One of the things we really struggled with was the sense that we had to make Peanut fit into school  —  instead of vice versa  —  because in the real world, you have to be able to follow the rules. But school requires a lot more rule-following than life does. Adults have opportunities to find the type of work, workplace and social context that works for them; school is mostly one-size-fits-all. Kids who have a hard time in school aren’t necessarily going to have a hard time in life. Making Peanut fit into the standard school system isn’t an indispensable part of turning him into a happy, healthy, successful adult.

3. School is more flexible than you think. Our school initially set the expectation that kids attend full-time or not at all, but once we ran into trouble, they were willing to support a different kind of arrangement. We’ve done half days, we’ve sent Peanut part-time to public school and part-time to enrichment classes, and we’ve done homeschooling with supplementary classes at a private school.

4. Be the squeaky wheel. Peanut will not put up with a situation that doesn’t work for him; if he’s bored or frustrated, he brings the whole classroom to a grinding halt. That makes life difficult for his teachers, classmates and family, but it also ensures he gets his needs met. With our daughter, it wasn’t so obvious. Like a lot of girls, she just quietly daydreamed when school stopped engaging her. In both cases, I spent too long trusting in the school to sort things out. Now I know I need to advocate vociferously for my kids. Be prepared to be pushy, and make sure the teacher and school follow through on any plans you discuss.

5. Trust your gut. So many school counselors, psychiatrists and other experts told us they knew what was “wrong” with Peanut, and how to fix him. We spent a lot of time listening to and working with “experts” whose approach and perspective just didn’t gel. Over time, I’ve learned to trust my gut on who to work with. We’ve worked with two amazing psychologists, a wonderful developmental pediatrician and an incredible public school support worker who took a shine to Peanut in kindergarten and has stayed in touch (entirely beyond the call of duty) for four years. We chose Peanut’s new school in large part because I feel like the principal really gets him. I wish I’d spent less time working with people who never felt right to me and just followed my instinct to find and work with the people who clicked.

6. Find other parents in a similar situation. When my daughter was born, I treasured the circle of new moms I hung out with for much of her first year. And when Peanut was still a toddler, I was thrilled to connect with another group of parents through a moms’ group that a dear friend of mine convened. As we headed into the non-stop crisis of his school years, however, those mommy gatherings felt increasingly foreign, and even painful. It was hard to console a mom whose kid cried at the grocery store when my kid had just battered a hole in his bedroom wall during one of his near-daily meltdowns.  At a certain point I just couldn’t be part of those conversations anymore, so I sought out parents who were having atypical parenting experiences: friends with kids who had learning or behavioral issues, parents I met through homeschool programs and other moms I met on Facebook groups. Once I started focusing on my relationships with moms who had similar challenges, I stopped feeling so alone with our school struggles.

7. Rule nothing out. I would never have expected to homeschool, but it’s turned out to be the only viable option for us at this stage. Homeschooling felt a lot more feasible once I realized I didn’t have to do it on my own: as soon as I posted a tutoring gig on Craigslist, I was shocked by how many fully certified teachers were willing to work with us at home for $18 per hour. My husband never expected to send a kid to private school, but once he recognized the public school system just couldn’t serve Peanut, he was game for reaching out to the private school that now teaches Peanut part-time. If we had realized how many options were actually available, we’d have been much less despairing during Peanut’s initial troubles with school.

8. Nothing stays the same — and nothing will change. It may sound like we had three years of unrelenting hell once Peanut started school, but the truth is more complicated. At various moments we shouted with joy, convinced that our latest setup – the terrific homeschooling teacher, the move to half-days, the change in schools – had solved our problems. But none of our moments of harmony lasted for long. In the past four years we’ve had to reinvent our school, childcare and work arrangements every six months. During this time, we also kept expecting to find the school, teacher, medication, parenting approach or developmental stage that would see Peanut settle into school. But once I stopped expecting the miracle solution, things got so much easier. I re-organized my work and started treating every day as a new day  —  not just to let go of resentments from a bad day, but even more importantly, to be prepared for a rough day even if the previous day or week had gone well.

Best of all, I stopped seeing Peanut as a problem to solve, and actually just got to experience him as my kid  —  my fascinating, exasperating, amusing, loving kid.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Person Who Doesn’t Understand My Child’s Sensory Issues

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Dear Well-Meaning Person,

When I talk about my daughter’s sensory issues, I know you think you get it because you have to cut the tags off of your clothes or you may have certain smells that bother you. I want to educate you by sending you information via email or recommending a book I have read, but I don’t. I don’t because I worry you won’t even read what I have sent, and that makes me sad. I love my daughter very much and wish others cared about her as much as I did.

In reality, I don’t believe anyone will ever love my daughter as much as I do. I don’t think others will understand that she chose to wear her shoes without socks because she couldn’t get the seam just right so that it did not bother her sensitive toes. No one quite gets that when my husband wants to have fish for dinner, he must cook it outside because the smell is such an assault to my daughter’s sense of smell. Try as they might, not even her own classmates understood why she wore the same dress every day for six months. Instead they chose to call her homeless and tease her relentlessly. Not one adult at her school took the time to ask about this. If they had, I would’ve told them that was the one dress my precious child knew would feel good on her sensitive skin.

Even the school psychologist laughed when she discovered that my daughter was sniffing her. At my daughter’s IEP later that month, I informed this professional that even though my daughter is repulsed by many smells. She seeks out how others smell. In her mind, if you smell good, you must be a kind person.

To the person who wonders why my child only eats a limited number of foods, I would say it’s because her sense of taste is also affected. She is afraid to try new foods because she is fearful that they might not taste good. You tell me all kids have a limited palate. You tell me it will get better. To that I ask, “Do other children become so anxious around food that they get sick with worry?”

I’d love for you to know that things are so much better than they used to be. Right now my daughter has a closet full of clothes she actually wears. I’m happy to report my daughter now wears holes in her socks. We actually have several pairs that are missing their partner. My daughter has learned there are other, more socially appropriate ways to tell if a person has a kind soul. Recently my dear child is becoming more willing to try new foods. She’s learning some foods taste better than she thinks they will. If they don’t, there are ways to spit the food out gracefully. She’s also learned that sometimes we just chew and swallow fast. We keep a tall glass of water handy for the times we need to wash down food that doesn’t taste as good. (By the way, my husband still has to cook fish outside.)

Why do I think you should take the time to learn about my child’s sensory processing sensitivities? Not just because it’s the compassionate thing to do, but because one day you may have a child or grandchild with these same issues. If you take the time to educate yourself now, then when you encounter a loved one with similar challenges, you will know how to help them.

If you want to be supportive and show you take her sensory sensitivities seriously, you can say things like, “What can I do to help?” You can offer to educate others, like the teachers who could’ve educated the other students as to why my daughter only wore a blue dress. You can stand up and tell my child, “It’s OK. We still love you.” Another thing that would be really helpful is to ask what foods my child likes, and then at a gathering, provide those foods along with your regular fare.

It would be helpful if people just said, “That must be rough,” followed by a hug. This can be said to me or my daughter, depending on the circumstance.

Follow this journey on Raising a Drama Queen and like Cate’s page on Facebook.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

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4 Things to Know After Receiving a Spina Bifida Diagnosis

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Well, you didn’t see that coming. Odds are you’re a few hectic weeks into your new mommy-to-be glow, and suddenly, you’re told two words: spina bifida. Spina what? You’re probably feeling completely overwhelmed. As if the thought of having a new baby wasn’t overwhelming enough, you’re suddenly faced with all of these issues: the doctors, the screenings, the unknowns, the fear. But you’ve got this, Mama. Your world may feel like it’s upside down right now, but it will get better. It will get so much better than this. Here are four things you need to know:

1. It’s not your fault.

I remember lying on the ultrasound table and hearing the words for the first time: spina bifida. My mind went completely blank. All I could think about were the things I had done wrong in my life. Surely this was my fault. Did I have too much morning sickness? Did I not have a healthy diet? Did I diet too much in my early 20s? Did I miss my vitamin last Tuesday? Listen to me, Mama, spina bifida isn’t your fault. All the orange juice and bananas in the world may not have prevented this diagnosis. According to the Spina Bifida Association, there is no single cause for spina bifida. You didn’t do this. Daddy didn’t do this. You shouldn’t blame yourself. You may have been thrown a curve ball, but lucky for this baby, Mommy and Daddy know how to dig deep and stay in the batter’s box and keep their eye on the ball.

2. Enjoy your pregnancy.

I wish I reminded myself of this when I was pregnant with my twins. For 16 weeks, I was basking in my pregnancy glow. I was carrying not one but two humans in my belly. I thought I was a rockstar.

And then at week 16, I learned one of the twins had spina bifida. I immediately went from rockstar status to compulsive worrier. I attributed every bout of morning sickness, every minute of heartburn and basically every twinge to the baby’s spina bifida. I was a complete disaster. I was always tense. I fought with Daddy all the time. How could he possibly know what I was going through? I felt completely robbed of happiness. Even worse, I felt guilty. How dare I celebrate my pregnancy with so many unknowns on the horizon?

Looking back, I wish I had done things differently. I wish I could tell myself to enjoy those final weeks of pregnancy, to enjoy those final weeks of having an only child, to enjoy that beautiful time of feeling not one but two babies growing inside of me. But hindsight is 20/20. And while I can’t go back and relive that time, I can urge you not to make the same mistakes I made. Enjoy this time. Rock you maternity clothes. Rub your baby bump with confidence. Smile and, most importantly, relax. This is an amazing time in your life. Don’t let two little words cast a shadow over your moment in the sun.

3. Don’t try to figure out spina bifida all at once.

You just got your diagnosis, and you are feverishly Googling it on the ride home from your ultrasound. You’ll spend sleepless nights mentally building wheelchair ramps in your house and wondering if you can replace your staircase with an elevator. You’ll reach out to your local Spina Bifida Association chapter, and John Mellencamp will become your new favorite singer.

A few days ago, your biggest worry was whether or not to paint the nursery a neutral green or go with the standard blue or pink. Now you find yourself trying to correctly pronounce hydrocephalus and myelomeningocele. Stop yourself right there, Mama. You don’t need to become a spina bifida master before your little one is born. You don’t need to have all the answers. Right now, you probably don’t even know what questions to ask. You have plenty of time to learn all of this. First things first, you’re about to bring a new life into the world so prepare yourself for the road of motherhood ahead. The lessons will come in due time. Remember to breathe. 

4. You’re not alone.

Give yourself a minute to digest the news, give yourself a minute to be emotional and then get your bearings and get ready for baby. Perhaps you never met a person with spina bifida or any mother of a child with special needs. Their lives seem foreign — and challenging. But I can promise you, you’re about to enter a community of extraordinary people. You’re about to meet little ones who will steal your heart and parents who want nothing more than to help you succeed. You’re not alone in this journey. The amazing people you are about to meet — kids, parents, therapists, doctors, nurses, people in online communities — will give you hope and confidence.

I know where you’re at right now. You’re overwhelmed and scared. You’re unsure if you can handle this unknown life ahead of you. But for every adult and kid out there with spina bifida today, there was once a terrified mother or father standing exactly in your shoes. Someday you will look back at this time and wonder why you were so scared. Someday you will look back and chuckle at those sleepless nights. You may not believe me now, but you will. And someday you may share your story with another mom with that familiar nervous look in her eye.

Hang in there, Mama. You got this. We got your back. Welcome to the club.

Nikki Nardell.2-001

Follow this journey on Isaac’s Big Day.

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