It was not my first IEP meeting. Hardly. My 75th team meeting to be exact. With three boys on the autism spectrum, I am a professional IEP parent. We joke that I should have my own coffee mug at the table. I could have wallpapered my home by now with the stacks of required paperwork handed out by law at every assemblage.

I’ve been through three diagnosis moments with my sons. A couple of years ago I made the choice to pull one of my boys from the mainstream classroom into a sub-separate autism program. I’ve sat through meetings based entirely upon the bullying my child has been the victim of.

This meeting was for my oldest son who had just started high school. He had wanted to try to take an elective and go without the extra academic help he had needed for so long. He ached to be a “typical” kid in high school who got to enjoy the extras. My children have had to miss out on these extras for so much of their childhood. While other children are enjoying their extracurricular activities or time with friends, my boys so often spend their time at doctor appointments, therapy or receiving extra help.

He just wanted to take a fun elective. Video production. We agreed to let him give it a shot. In the weeks that had turned from summer to fall, it had become his favorite class. He lit up talking about the projects they were working on and the new kids he had met.

But then there was the flip side. The school had asked me to come in because he was struggling in his other classes. The alternative to his elective was a class called academic support. The class where you receive help in succeeding in all your other classes. The class where you do additional work while your fellow students are in their elective or joking around and socializing in study hall.

I knew what they were going to say. I knew the decision I was going to have to make. He needed the academic support. He is a brilliant boy with intelligence that blows his peers out of the water. He has a MENSA IQ. He takes endless pride in it. But unfortunately, his executive functioning challenges often get in the way of his intelligence, being reflected in his work or on his report card.

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I sat in that meeting and tried painfully to hold back the tears. My voice was on the edge. My throat ached. I paused between sentences in hopes that the emotion would leave me. A hundred times in these years of parenting I have been on that precipice. The wave of emotional pain rising in my chest. The sadness enveloping me. And almost always, I am able to push the tears away. Each time, at the last moment when I am about to allow the words I am hearing to actually reach my heart, at the very second when I am about to be human and truly feel what I am being told, I pull up out of the nosedive and right myself into position to fight for my child.

“Pull him from the elective,” I quickly said. I tried to keep it brief. “And wrap it up so I can get out of here,” I thought to myself. The room grew warmer, the oxygen in the air seeming to lessen with each breath. And then it happened. The tears came — and not just a few. For the first time in quite some time, I wept. In a conference room filled with strangers. With artificial light and stiff chairs and a school clock on the wall loudly ticking the seconds as they went by.

I wept for all the times I was met with a barrage of clinical terms for all the things I thought were just my little boy’s adorable quirks. I cried for all the birthday invitations my boys never received. My heart ached for all the afternoon phone calls from school relaying the difficult events that had happened that day. I wept for all the times my boys just wanted to fit in and be like everyone else, but couldn’t.

Because a mother’s sadness is like that, you see. Like a back that gives out on you without warning. For months and years you carry heavy things without recourse. Then one day you unassumingly reach for a pen and you are frozen.

I quickly gathered myself and was able to say the words once again. I wiped my tears and cleared my throat. “Pull him from the elective and put him in academic support,” I stated calmly. “Where do I need to sign?” We do what we have to do.

Being a nurse in quality assurance, I’ve read through endless medical records. Not long ago, I came upon a letter from an insurance company to the mother of a 10-year-old boy with autism. It was a letter stating they would no longer be paying for his therapy because the doctors who had reviewed his case felt that he had “reached his maximum potential.” I stared at those words for quite some time as they uncomfortably settled in my bones. Suddenly I was with that mother as she opened her mail at the kitchen counter with her children happily playing in the next room. I was with her as she herself read those words about her baby boy. This must have destroyed her, I thought.

But then I thought what was probably closer to the truth. The words taking her breath away like a punch to the gut. The tears almost coming, but then halted by her children’s requests. Her stuffing the letter back into the envelope and placing it with the piles of others. Her taking her children to the park and drafting another appeal letter in her mind as she pushed her son on the swing. Because that’s what we do.

I left that meeting on that gray, rainy day and hurried to my car. I had two doctor appointments to schedule, one insurance company phone call to make and three teacher emails to return before I was due in at work. I reapplied my makeup, checked all my boxes and walked into work an hour later with a smile on my face.

Later that evening, I curled up next to my son on the couch and broke the news of what was going to happen at school. We sat together in the sadness of it. But then we moved on to how accepting this help would make him even stronger, how with some extra support and his amazing intelligence that he would be an unstoppable force. He amazed me with the grace and courage with which he accepted the news. He always does.

I lay awake hours later that night staring at the ceiling. My brain raced furiously thinking of ways I could make up for this to my son. Maybe there was a video production class somewhere close by I could sign him up for. What if I picked up more hours at work to pay for a private tutor? There must be groups for older boys with those interests, I thought. I would look tomorrow.

Because, in that moment, I knew what I really needed to do. Alone in the dark, I let the tears come. This time I didn’t stop them. I felt the sadness to my core. I sobbed and I heaved and I let the pain seep through every inch of my body. I did not stop until there was nothing left. And then I prayed for the strength to be what my children need me to be. The strength to lead them on this path. To fight for what we need to, but to accept what we must. To honor the heartache, but to find happiness anywhere and everywhere we can. After all, that’s all any of us can do.

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There will now be a weekly series of walks and runs for children on the autism spectrum and their families in Staten Island. The program comes from Staten Island Borough President James Oddo, Assemblyman Michael Cusick, the New York Road Runners (NYRR) and Autism Speaks.

Oddo was inspired to launch the events after reading an article in Runner’s World about Rob Rueff, who went on daily runs with his autistic son Ryan and noticed a number of positive results, reported DNA Info.

Oddo announced the details of the event at a press conference on Thursday at the Staten Island Borough President’s Office. The first run/walk will take place on April 3 at Conference House Park, and the series will continue every Sunday after that. Families can RSVP online.

Announcing a new running program for families of children on the autism spectrum

Posted by Staten Island USA on Thursday, March 24, 2016

 

“This event is not about a love for fitness. Rather it’s about helping to further the relationship between the child and his or her parent,” Oddo said. “It’s about the child’s confidence and about potentially providing many other benefits so eloquently described by Rob Rueff. For some kids, like Ryan, it is running. For other kids it might be some other activity. Whatever the activity, we simply have to find creative ways to help put more of the pieces of this puzzle together through perhaps unexpected paths.”

“I think it’s going to have a tremendous impact on the children and their parents, too,” Michael Schnall, of New York Road Runners, said, according to Time Warner Cable News NY1. “I think the parents will benefit and it’s going to be a wonderful sort of opportunity to provide something that maybe wasn’t there before for this community.”


lucy chapman
Lucy Clapham

Recently I’ve read several articles about autism in which the writer, who often has an autistic child of their own, criticizes people putting “higher functioning” autistic people in television shows. They use words like “mild,” “not real autism” and “glamorous.”

While I appreciate that my experience differs from a lot of people with autism, namely those who are nonverbal (I do not like functioning labels much), I find it quite upsetting that someone would dismiss my experience of autism in such a way. Allow me to give you some examples to show why my “high functioning” autism is not “glamorous.”

Anxiety

It is likely that most people on the autistic spectrum suffer from anxiety at some level. Mine is severe, and that is not just me overexaggerating. I can have as many as 20 panic attacks in a day, caused by anything from seeing a moth to a massive routine change. I’m scared to leave the house due to agoraphobia and have to be accompanied at all times as a result.

Behavior

My behavior can change quickly. Although I may seem calm, I’m probably just faking it. Just one trigger can change my acting stance into what I call the “real me,” and then my behavior is unpredictable (even for me!) and potentially even dangerous if not handled well by my support staff. Those of us with “high functioning” autism may be able to “fake it,” but usually only to some extent. It’s like the metaphor of the graceful swan paddling for dear life under the water, but you just see the calm.

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Self-injury

This is not just reserved for one end of the spectrum; many autistic people experience this behavior. I’ve had to have wounds bound up after smashing my head into a wall repetitively. I used to suffer from rashes after I would burn myself on the carpet during a meltdown. As a teenager I often bit my arms and hands, sometimes until they bled.

Difficulty expressing myself

Although I talk… a lot… it’s rarely about what needs to be talked about, such as my feelings. I cannot tell you what feelings are going through my head because I cannot name them. As a result, a typical emotion can quickly become totally overwhelming to the point of a meltdown. If I’m feeling ill, I’m more likely to tell you to go away (in a much less polite way) than tell you I’m sick. I suffered from gastritis for well over a year before I was able to accurately tell anyone what the feeling was to pursue a diagnosis (and now treatment). Just because someone can talk does not mean they don’t have trouble communicating.

Auditory processing

Again, I can talk extremely well, which makes it confusing for people to understand that my comprehension is often extremely poor. While I can’t explain this scientifically (it’s probably a wiring thing), it’s extremely common in verbal autistic people. Not understanding most of what is said to you throughout the day can lead to yet more
frustration and more meltdowns.

Sensory processing

Some people with autism have sensory processing disorder (this can be diagnosed as a condition on its own without autism), and this affects the five main senses plus the vestibular system and proprioception. Everyone has this at a different level, so some may love loud noise, bright lights, strong fabrics, strong flavors/smells and vestibular activity (stimming), while others may hate all of the above (although may still stim but to keep the other senses out). Others, like myself, may have an extreme aversion to one or two senses but seek the others. Sensory input, whether too much or too little, can also trigger meltdowns.

Meltdowns and shut downs

When everything gets to be too much, I either have a meltdown or a shut down. In a shut down, I will attempt to block out everything to the point where I’m basically catatonic and unable to speak. In a meltdown, many of the behaviors I described will come out, along with uncontrollable screaming and/or wailing. Neither can be solved
quickly or easily, and the best option is to leave me alone while I feel this way (which is easier said than done at times) to avoid further input. I’ve also gone into such a severe “flight mode” that I’ve ran into traffic without any thought for my safety. (Fight-or-flight mode is what animals go into when they are frightened. Humans have mostly learned to control this.) I will suffer from a “hangover” for several days after the shut down or meltdown and may have to sleep it off.

So to conclude: I can talk, but I cannot communicate. I do have some spiked skills but not enough to get me a job or earn me a place among the 400(ish) people with savant syndrome in the world. While my autism may appear to be less “severe” on the outside, it is still hard to live every single day like this, knowing things may never change or get easier.

Please try not to get into the habit of comparing people on the spectrum. This just causes anger and tension. And finally, always remember that if you meet one person with autism, you have met one person with autism.


There’re 24 hours in a day, but it can take just one meltdown to make time stand still. Each meltdown can feel never-ending.

My son was having a great day, but within seconds, he unbuckled himself from the backseat of the car and thrust back and forth screaming. I pulled over and tried to help him. I told him to use his words and do the four B’s — put on the brakes, take a deep breath, shut off your brain and hug your body — but he was at a point in the meltdown where the only way out was through.

For 45 minutes we were parked at a Chick-fil-A, the same place he so badly wanted to have dinner. Unfortunately, he seemed to have lost all sight of dinner or anything through the fog of his meltdown.

Seconds felt like minutes and minutes felt like hours as I watched my son no longer form words, hit his head and lunge to bite me. All I could do was watch and try to keep him safe until the fog lifted.

Then I could see his rage turn to sadness. His cries were less angered and became more of a cry for help. He leaned forward and said, “Mommy, my head hurts. Please let’s go home to bed.” I let out a huge sigh, buckled him in and drove back to our apartment.

The physical post-meltdown exhaustion wore on him like a 200-pound weight, and shortly after 8 p.m., he was fast asleep. I was lying next to him and cried out every emotion I felt. Anger because I couldn’t help him. Sadness because it’s not fair that he has to go through this. Fear because of his safety.

The list goes on and on, but after my late-night detox from it all, I find myself in him — in his strength — and I find hope. Hope for a better tomorrow. Hope that the next meltdown won’t be as bad as the last. Hope.

From one mom to the next, it’s easy to drown in the tears of a meltdown hangover, but no one said being a mom was easy.

Don’t live in the meltdown. Process it, feel it, but move beyond it. If nothing else, believe in hope and give anything but up.

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author's son on a merry go round When my son was diagnosed with autism six years ago, I honestly didn’t know what to think or expect. I tend to err on the side of hope and optimism in all situations. Yet even the most basic Google searches left me simultaneously devastated and terrified — not knowing how to prepare or how to help him.

If you’ve been in the same situation, you know you can find some uplifting sentiments scattered around the Internet, but they’re few and far between. For example, there’s the “Welcome to Holland” poem and the “If you’ve met one person with autism, you’ve met one person with autism” statement. But other than that, there’s not a lot to cling to out there in cyberspace.

The following are eight uplifting observations I wish I’d found in an article when I was searching for hope at a time when I needed it most.

1. You will find strength you never knew you had. 

You will discover recesses of untapped courage and wisdom, and you will use them to guide your family and advocate for your child.

2. You will learn a whole new set of acronyms.

In the beginning, you will think the very people you’ve sought out to help you have their own secret language. OT (occupational therapy), PT (physical therapy), IEP (individualized education program), DRO (differential reinforcement of other behaviors)… the list goes on, but you will learn and become proficient in this alphabet-soup style of speaking faster than you ever imagined.

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3. You will make new friends, and they will be honest and supportive.

Families, just like your own, will embrace you, and you will do the same for them. You can be real with one another because you are on the same path. These new confidants understand that your child will eat only one brand of yogurt, and they’ll never judge.

4. Words are overrated. 

Sometimes a smile, an unexpected hug or a two-word phrase is really all you need.

5. Milestones are still something to celebrate no matter when they occur. 

Blowing out birthday candles will make you cheer for your child no matter when he gets the hang of it.

6. You will gain newfound perspective.

Things that once would have bothered you — wet clothing left overnight in a washing machine, your favorite TV show getting canceled — are inconsequential now. If your child is having a good day, so are you.

7. You will find kindness in strangers.

When someone in a restroom says she won’t use the hand-dryer because your daughter is covering her ears, dreading the noise, your faith in the world will be restored.

8. You will see your other children rise to the occasion. 

Watching your other children show patience and compassion will make you realize they will be infinitely kinder adults because of the love they have for their sibling.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. 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 Submit a Story page for more about our submission guidelines.


I recently read a terrific article reviewing a new television drama series centered on autism. The show is called “The A Word” and is a six-part series produced by the BBC (as far as I know it is still currently only available to watch in Great Britain but reflecting on the growing ease-of-access to international entertainment, I am certain it will come available in the U.S. soon).

The article about the show that I enjoyed was written by an adult on the spectrum and her father, and one of the things that stood out for me in the article was the father’s description of his daughter’s challenges in school, identifying it as a realm on the spectrum called “demand avoidance.”

What he described was so familiar, sounding so much like what my son experiences, that I wanted to learn more about this “demand avoidance.”

More to the point, I wanted to learn about tools and strategies to see if we could adapt them to help my son with his struggles at school.

After an initial search online, I discovered very little information that I could use, and it was frustrating.

There is a lot of information available about autism on the Internet — in truth, there is too much information about autism on the Internet. A lot of the information is too clinical to be of use (such as scientific papers) or too generalized (such as new media articles painting autism in broad, often stereotypical strokes).

Very few search results offer concrete tools and strategies for specific issues. In a lot of ways I think the disparate and unfocused information about autism currently available online mirrors the disparate and unfocused way our society has responded to understanding autism.

What I would really love to see is a one-stop shop of autism information; a site that would start at the 30,000-foot level (the broad strokes information) and then allow readers to drill down on the particular issues they need information about, all the way down to the clinical, in-the-weeds scientific papers if they really wanted.

The site would describe all the extraordinary that is on the autism spectrum, connecting the dots between research and theory, behaviors and experiences, tools and strategies, and the social and cultural.

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It would offer tools and strategies for specific behaviors and needs, as well as opportunities for readers to interact with others to enrich what they know and are learning on their respective journeys.

Most importantly, the site would be alive; it would not be a dead repository of set, unchanging information, but instead would be constantly monitored, updated and evolve to reflect changing scientific and social understandings of autism, informed by its readers as much as by researchers, scientists and evidence-based studies.

If and when such a site shows up first in my internet searches, I will know our society has truly matured in its understanding of autism.

Follow this journey on Autism Mom.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. 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 Submit a Story page for more about our submission guidelines.

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