The One Thing We Insisted Be Included in IEP Meetings for Our Son With Autism

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Right after our son’s autism diagnosis, we had our first individualized education program (IEP) meeting.

At the meeting, my son, his dad and I sat around a low table with his teacher, his special education teacher, his IEP case manager and the school principal.

My son entertained himself with rocks and minerals set on the table for the day’s lesson while the adults started to discuss needed accommodations.

The IEP case manager handed us a piece of paper summarizing our son’s “issues” and started to read this list of “problems” out loud.

I was stunned. My son was sitting at the table with us and could hear the manager reading this list of “problems.” Who would be comfortable listening to authority figures recite what was “wrong” with them?

More importantly, there was no list of my son’s strengths to go along with the list of challenges.

This was the real problem.

For every characteristic that can be classified as a “problem,” there’s a flip side — something that actually works as a benefit for my son. It’s part of his strengths.

For example, his sensory sensitivity gives him the benefit of access to a lot of information. When he processes the sensory input, he can analyze what he heard, saw, smelled and felt and can draw some amazing and astute conclusions.

He may have difficulty processing verbal information as a visual thinker, but he remembers what he saw. He can see an extraordinary amount of detail and can draw beautifully.

While my son’s perseveration could be most challenging, it’s also a characteristic that makes him dogged when trying to learn something new he’s interested in.

No child comes into the world with only challenges.

Children with disabilities must learn strategies and methods to use as tools to help them do the things they want to do. These tools must be focused on the child’s strengths and be based on love, creativity and patience.

Failing to use those strengths as the foundation for developing tools — and not even taking those strengths into consideration — is a failure by the adults responsible for supporting the child.

During an IEP, the child’s strengths should be the first thing discussed — challenges second — including an analysis of how each challenge has a “flip side” that works to benefit the child.

At that first IEP meeting, we insisted from that point forward our son’s strengths were to always be prominently listed along with the “problems” the IEP was intended to address, and that his strengths were considered first and used to frame IEP accommodations.

My son later told me that he wasn’t listening to our discussion — he was more focused on the interesting rocks and minerals on the table and didn’t hear the list of “problems.” 

Thank goodness.

Lead photo source: Thinkstock Images

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To Parents Who Are About to Enter Their Child’s IEP Meeting

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Dear Parent,

I feel for you.

The amount of anxiety and pressures that can often go into an individualized education program (IEP) meeting can seem daunting. You struggle with compiling your child’s records. At times you may just be worried about your child’s school truly not understanding the needs of your child.

For those just starting off in the process, you might be stressed about the initial evaluation process. As your child grows up, you may also have concerns if your school is truly providing transitional services to help them when they age out of supports as adults.

And don’t even get me started about the amount of IEP paperwork that may be flooding your house right now.

Regardless of where you are in this timeline, I want you to know something very important today.

You are your child’s greatest advocate, so when you get into that room, hold your head up high and advocate to the best of your abilities for the programs and services to address your child’s needs.

I recently listened to a keynote presentation from Ryan Blair, a best-selling author who is a single father of a child on the autism spectrum, in which he said, “When you walk into the room of your child’s IEP meeting, you are the boss. Not the principal.”

My parents lived by this quote of “being the boss” ever since they started advocating as part of my IEP when I was diagnosed with autism at 4. This was when I was just starting school, so while I transitioned to school, my parents transitioned to help me find supports. One of those transitions had to do with preparing for IEP meetings.

Years after, I would start sitting in on more of my IEP meetings to figure out more about the supports I needed to succeed. Being able to discuss this with my village made learning easier for me. I now recommend students to consider sitting in on their IEP meetings to learn more about their development.    

Today as a disability advocate, I can say that there are countless resources out there that I’d recommend to you to help you when it comes to IEPs. Goodwin Procter LLP created “Individualized Education Program (IEP): Summary, Process and Practical Tips,” 26-page guide that contains tips on the IEP process. In addition, groups such as Autism Speaks have created a list of resources that can help with your child’s IEP and other school related topics.

Seek out these resources and never stop fighting for your child. The Individuals
with Disabilities Education Act (IDEA)
 serves as a law to protect our loved ones with disabilities. Protect your child by being prepared and ready for that meeting. My parents made a world of difference towards my development today as an adult on the spectrum by advocating for me and my needs in school.

I hope you will be able to do the same for your child.

Your Friend,

Kerry

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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How a Communication App Helped My Student With Autism Find His Voice

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Thomas is 5.

He lives with his family just up the street from me. I get to see him for two hours every weekend when he comes to a children’s class I teach — and occasionally during the week if he stops by my house to say hi.

Thomas has autism and he can’t speak much. His voice rarely tumbles out of his mouth, and when it does, it is generally difficult to understand. In a class full of youngsters, sometimes that means he can be overshadowed by a lively crew of voices all chirping for my attention.

CoughDrop app.
The CoughDrop app.

But Thomas does have a voice — he wants to communicate. While pointing and guessing got us through for a while, relying on gestures was frustrating. Since I work for a company that has created an AAC (Augmentative and Alternative Communication) app, it occurred to me that this could be a big help to the boy in my class who didn’t have a voice. So at the beginning of this year, with his parents’ encouragement, we downloaded the app, CoughDrop, onto an old Android tablet and began using some basic AAC boards in our class. Thomas’ family is just starting to explore speech options for him, and this was an avenue they chose with the help of professionals.

Using AAC in class has been an adjustment for all of us. I needed to adjust my lessons to include opportunities for Thomas (along with the other children) to engage more clearly with the topic. I needed to learn to be patient and allow plenty of time for Thomas to respond. I needed to find ways to model language to help Thomas better understand how to communicate. But Thomas has inspired me, so I worked and planned and together we changed.

To start our class each week, using my own tablet, I pull up a copy of Thomas’ feelings board to tell my clutch of little learners how I am feeling that day. Then, I ask each of them in turn to use my device to tell me how they are feeling. Thomas watches intently as each set of small fingers excitedly navigates the buttons to share their thoughts.

Almost without exception, when it is his turn, Thomas uses his tablet to tell me (with a crooked grin) that he feels silly. He has a deliciously quirky personality and I love getting to know him better. And because we are all using the device to speak, Thomas isn’t left to feel out of place or strange.

A once silent boy has begun to bloom. I have watched as all the research I’ve read has come center stage on the child-sized chairs of my classroom. Once Thomas learned there was a way for the world to hear his voice, he took off. Suddenly he was ten times more vocal than he’d ever been before. I still don’t understand most of his words, but he speaks them regularly and even hums along when we sing. He was immersed in our activities, and there was a light in his eyes that had been missing until now.

With the help of AAC, Thomas answers questions in class, regularly requests a seat on my lap, and asks for his mom at some point almost every week. He often says “hello” to his classmates and occasionally tells them a word or two about his day.

Sometimes he speaks out of turn. Sometimes he shouts words that are off topic. Sometimes he starts up one of our downloaded children’s songs from his speech board when he gets bored (that can’t be right, my class is never boring).

He loves cars. He always prefers to be outside. His favorite means of movement is running!

He is just like every other 5-year-old.

Thomas may have trouble speaking, but thanks to augmentative communication and CoughDrop, I can hear his voice loud and clear.

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Autism, the First Day of Kindergarten, and Crying for the Wrong Reasons

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When your child is on the autism spectrum, the journey is full of twists and turns and bumps and many forks in the road demanding a decision you often times second guess. There are no easy answers and a myriad of questions — and no two roads are the same of course. One of the things we faced when my son was 5 was if we should keep him in the current therapy center he was at or begin him in kindergarten (with assistance) at our mainstream school. Of course our hopes were to have him begin school with his peers and neighborhood friends. But he was doing really well at his therapy center and making progress. And the truth was we didn’t feel he wasn’t quite ready for mainstream school yet. We decided it was best for him to stay put, continue his therapy, skip his kindergarten year and start with his class his first grade year. It was a good decision.

But I’ll tell you something that’s not in any of the manuals and resource books about autism — you as the parent may have moments of sadness that sneak up on you. There are sneaky little moments like seeing the kindergarten bus tooling around your neighborhood picking up freckle-faced grins for their first day of school with their teary-eye parents holding cameras and waving. That was my moment. I didn’t get that first-day-of-kindergarten moment with him. As that happy bus drove by my house, I realized I would never have that moment with him. And a well of emotion overtook me. I am not a big crier and yet here I was looking out the window watching the bus pull away and tears were rolling down my cheeks. Why?

I knew it was best for him to be where he was at. The social skills needed and the loose structure of kindergarten may have made him very unhappy. It could set him up to fail, and I didn’t want that. So in no way did I second guess the decision to keep him where he was at. But I was sad.

So why was I crying? Wasn’t my son where he should be? Why was I upset about him not going to a place that wouldn’t suit him well at all.

I suddenly realized this had nothing — Not. One. Thing – to do with my son and everything to do with me.

Me! I wanted that kindergarten moment. I was having a pity party for myself. Being sad about that “picture perfect kindergarten moment” was me grieving the loss of what I thought was supposed to be. But in that moment of realizing this was all about me and my ego-driven ideals, I found a sense of peace.

Yes, my life was different and so much more enriched because of the road I was on with him. I learned to find joy and delight in the smallest of moments. I celebrated little victories. I slowed down. I was intentional. I figured out what was really important. My son wasn’t sad to be missing out on that first day of kindergarten — he was thriving and happy where he was at! And that’s what was important. It wasn’t about me.

Image via Thinkstock.

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When People Say Children With Autism Are Products of ‘Bad Parenting’

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One of the most frustrating misconceptions out there…

Has anyone ever heard it said that a child with autism is a product of bad parenting? This “bad parenting” topic became a somewhat viral discussion in 2012 when clinical psychologist Dr. Tony Humphreys linked autism to parenting. Although Humphreys would later clarify some of his findings, saying parents are “never to blame,” his research had many people talking about the overall effects of parents on children with autism.

Many of these issues arise when I talk to parents today. Most of them, especially when their child is just diagnosed, blame themselves in one way or another for their child’s diagnosis. It’s heartbreaking. During those conversations, I share that I’m not a scientist by any means, but I do have some knowledge from growing up on the spectrum. Though after years of therapy, most of my early challenges were not as difficult to me anymore.

It’s ridiculous to think “bad parenting” is a cause of autism. That should be the end of the conversation right there. But I do usually follow up these conversations after sharing about my personal experiences by saying the following:

“By being a champion to your child on the autism spectrum, you can make a difference in their lives.”

By showing your child unconditional love, learning more about autism and providing them with supports whenever possible, you can do wonderful things for your child. Advocate for them, and whenever someone says autism is “caused” by bad parenting, make sure to educate those around you about the harm of these misconceptions. And the next time that happens, you can use this quote from one of our leading autism advocates, Dr. Temple Grandin“Autism is a neurological disorder. It’s not caused by bad parenting.”

That’s a fact we should never forget.

A version of this blog originally appeared on Kerrymagro.com.

Image via Thinkstock Images

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When You're a Bird in a World Made for Fishes

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When I found out a few years ago that I was on the autistic spectrum, it was a huge relief. It made so much of my life suddenly make sense. My “shoddy” school behavior and difficulty with monotonous jobs was all attributed to ADD. The social awkwardness I could never get over? Totally autism! Still, for the most part, the discovery was a novelty. I figured that I’d just go along with my life like I always had, and maybe being aware of my quirks and weirdnesses from a different angle would give me more power over them.

Well, I was a little right, but not quite enough. Actually, nowhere near enough. I mean, I was able to identify my quirks as relating to my neuro-atypical-ness, but it’s taken even more to figure out the difference between what made me “me” and what was an affectation that I’d developed for getting on in the world.

See, when you don’t know that you’re an autie and you feel separated and different from other people, you try to hide it, compensate for it. After all, why can’t you stay interested in regular subjects or sports? Why don’t you like the things everyone else likes? Why can’t you pay attention? What can’t you just suck it up and be like everyone else? What the hell is wrong with you?!

You try to act like other people do, you try to blend in with their weird little social rituals. You try to understand why they do what they do from their perspective, ideally, but you can’t necessarily relate to why they do what they do. You do your best to mimic them and go through the motions, and you can pass as them for a little while, but it’s hard. Like, really hard.

Hard maybe isn’t the most accurate word, though. Maybe that’s part of it, but more accurately, it’s exhausting.

Birds and Fish

Imagine being a bird in a world of fishes. You’re on the shore, and you’re supposed to go to school (heh) with them, and you’re supposed to get on with them, but you’re still a bird. But, it’s what you’re supposed to do. So, you dive in, hold your breath, do your best to make friends. After a while, you can’t hold your breath anymore. You have to come up for air, to get back to your own element. Your fish friends and lovers sometimes get pissed off because you leave them suddenly. Some understand, or at least accept, that you literally cannot help it. You have to breathe, for f*ck’s sake.

Some auties learn to get through this by holding their breath for a really, really long time – unnaturally long, even – and then when they have to come up for air, it’s a huge explosion of flailing and gasping. Others work out ways to only spend a little time hanging out with the fishes and then hiding on the shore so that no one realizes they’re not in the water all the time.

Me, I kinda want some SCUBA gear, I think that would work best, but I also want to have permission to not be in the water all the time. SCUBA gear would make it so that I could be comfortable hanging out with my fish friends. I wouldn’t have to think about how the f*ck to breathe when I’m around them after more than a few minutes.

Another big problem is that the world is made for fishes, so a lot of the mapping and processes that we’re taught in school and for work only apply to fishes and to the life underwater. When you’re a bird, you can’t use the aquatic navigation methods to get around the sky. And because no one teaches bird-type things as a regular course of life; most of us are on our own trying to sort it out.

And that means that when we do finally find each other, we’re often just as confused as everyone else as to what it takes to get on in the world. And then it’s even more complicated because there’s more variation in birds than in fish, it seems, so what works for a sparrow isn’t going to work for an ostrich or a hawk. We have to take bigger and bigger perspectives of the world in order to make any kinds of real general statements about our condition.

So, that’s how it feels when we’re trying to get on in the world. It sucks a lot. We’re all in unmapped territories, trying to find our way. It’s difficult living with fish-things, but in general, we like fish. We like hanging out with them and making friends with them and sometimes even being lovers and getting married and having biish or fiirds or whatever they end up being. We want to try to get along with them.

We just can’t be the only ones making an effort.

The Glass Wall

There are lots of different types of birds/auties, and it really seems that no two are the same. There are general characteristics, of course, that get mixed and matched together into every one, but sometimes that’s just presentation. What works to help control the less desirable behaviors in one might not work in another. This makes ideas like therapy really touchy, especially when words like therapy come out as synonymous with “because there’s something wrong with you.” Our greatest commonality is that we are fully human, and we want to be treated as such.

For all that any general statement is hard to make about auties, there are some commonalities I’ve observed. I’m not saying this is true for every last person on the spectrum, but it does seem to be holding up a great deal to scrutiny. (Your input, gentle reader, is encouraged.)

Specifically, we auties are behind the Glass Wall. For some of us like my nonverbal son, that wall is super-thick and full of occlusions. He can’t communicate effectively or regularly from his inside world, and he can only sometimes make out what’s being told to him from the outside. He does have a brilliant and vivid world going on in there, clearly, but good luck finding out what it is past the wall.

And then there are those of us who have thinner walls, but we still have occlusions. That glass acts as a fun-house-mirror type lens. We tend to take things super-literally, for instance, because we can’t always “see” body language to indicate a joke or sarcasm. We miss critical cues that tell us whether or not someone is a threat. If we tend to underplay threats, one bad experience makes us doubt all future experiences that might look kind of like that one bad time. We have a hard time discerning the factors and variables of interactions because the world is written in fish-language, which will never be our native tongue, no matter how much we study it.

Some parts of the wall become telescopic lenses, and these are our fixations — our “one thing.” This One Thing can become the Most Important Thing. It could be how the towels are folded (one of my big ones) or how the pencils are aligned or putting all the little cars in a row or only eating the vowels out of the Alphabits cereal. It could be texture issues, touch issues, certain types of sounds, control of our bodies… any of these things become so much bigger than what neurotypical people experience. We’re not being “overly sensitive,” we’re seriously experiencing this Thing more than they are.

Just to make things a little more “fun,” the thicknesses of the walls change with many factors. Food sensitivities, hormonal cycles, extended forced social interaction, money problems, relationship issues, and pretty much any kind of stress you can imagine will thicken that wall. False ideas that we fixate on in anxious states start to color the world. Everything is a threat, everything is bad, everything is dangerous. Our fixations are bigger than anything else, so much that we don’t know they’re false in that moment. Any other time, sure, we’re logical people, but when we’re stressed out and melting down? Nah.

Some of us have meltdowns and literally table-flip. Some of us shut down into deep depressions. Some of us run away, some of us lock up behind an impenetrable wall of blank, but almost always, there’s a neurotypical person looking at us in confusion, trying to figure out what the big deal is.

What to Do, What to Do

It would be super if we could start building a world that was equally suitable for fish and birds. Some of the things that birds really need to feel comfortable would make the world a better place in general, and fish definitely seem to benefit.

For instance, because we are so literal minded, we often also have an intense sense of fairness and rightness. If we are taught that the Rule is This, but then people start behaving like That, and no one gets called out about it, this creates enormous anxiety. What’s even worse is when we are taught the Rule is This, and we act according to This to the best of our ability, but then we’re reprimanded for it.

Justice and fairness are big deals.

We like true things, we like things we can trust. We like transparency and for topics to be fully explored and explained. We like knowing all there is on a subject, digging in deep to something we love and finding out everything we can about it, and we like sharing that knowledge with others.

We have needs, just like neurotypical people, but what confounds us a lot is how often neurotypical people don’t seem to pay attention to their own needs. Our perspective makes our needs loud and impossible to ignore, but that doesn’t make them less than yours. Your alarms are quieter, I think.

Maybe if you fish could make room for us birds in the world, we birds could teach you fish how to take better care of yourselves. And given our love for you in general, we’d probably help take care of you, too.

It’s only fair.

Follow this journey on Normfac.

Image via Thinkstock Images

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