Teaching children with exceptionalities has been my passion, career and life for many years. Little did I know my career and personal life would cross over. The transition from special education teacher to special education stay-at-home mom left me feeling like I was entering the special education world for the first time. 

The world of special needs was completely new to me, even though I kept hearing, “Oh, you are a special education teacher so this isn’t new for you,” or “How wonderful that you have that background as a mom.” The moment my 2-year-old son, Milo, was diagnosed with autism, my mind went blank, and I was truly a newbie.

One day I was sure I would excel at was truly the most eye-opening day for me as an educator. I quickly knew that my education had not prepared me for my son’s first IEP, although this was a day I had said would come easy to me because I had done it so many times before.

With this in mind, there are four things I want teachers to know from the parent perspective:

1. Give us time.

It was always hard for me to understand why parents wouldn’t send in the pre-paperwork on time or even at all. It would take weeks if not months to narrow down a date to meet. 

I knew exactly what that big package was when it arrived. I put it on the counter and put my catalogs over it. If I couldn’t see it, it wasn’t real, right? Opening mail addressed to the Parents of _____________ has been a daily reminder that my now-3-year-old is not typical. We receive mail daily from therapists, case workers, the county education office, the school district, etc. It is at times overwhelming. We have to schedule every meeting with such precision. I have to make sure it fits in with 20-plus hours of therapy a week, make sure my husband has the time off and find a babysitter for my newborn. It is not easy.

2. Walk into the meeting with the parent.

I walked into the meeting and saw 16 case workers, teachers and a variety of behavioral and developmental therapists staring at me. I quickly became overcome with anxiety and emotion, and I instantly felt lost. My knees were weak, my voice shook and I had tears in my eyes. As a teacher, I will always walk into the meeting with the parent.

3. Do not skip “basic info” pages.

We started the meeting by skipping over the first page of my son’s IEP. It had our names, address and basic information on it. As a teacher, I understand why this would not be a page to take much time for, but it was my hardest page to get through. It was the first time I had seen an IEP with my son’s name on it. His name was printed small, the word autism was in bold next to his name. I needed a few minutes to digest it, to understand it, to accept it. While going through the next few pages, it was the only thing I thought about, therefore leaving me in a fog for the majority of the meeting.

4. Don’t judge parents for calling and asking questions afterward.

I left my son’s IEP with such mixed emotions. I was trying to comprehend what had just happened in the past few hours as I was holding back tears and trying to stay focused. I realized I had quickly judged too many parents for calling after the meeting asking questions. I was quick to think, We just went over this. But I was one of those parents who called for many days, with many questions.

I learned I knew all the laws, what boxes needed to be checked and what questions to ask the parents. I had not known how necessary it was to be an emotional supporter to the parent. I learned the little efforts are not so little.

I will walk in with the parents and walk them out. I will never skip over anything, I will follow up, I will call, I will shake hands and I will hug.

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Dear Doctor,

Last April, you changed not only my son Brock’s life, but my life as well. I was scared to bring my son to your office. Prior to seeing you, no other medical provider took the time to truly listen to my concerns for my son. I was told, “Boys will be boys,” “You’re a first-time mom” and “He’ll outgrow it.” Another provider even laughed in my face while I was in tears and said, “All you parents these days want a label on your child.” But it was never about labeling my son, it was about finding him the help he truly deserved to lead a successful life.

Brock was born healthy at a whopping 8 pounds, 10 ounces. During the first year of his life, he hit milestones ahead of schedule. But around the 18-month mark, he started to regress. After getting a second, third and even a fourth opinion, I was at a standstill.

When it was time for Brock to enter preschool, I decided to homeschool him instead. That’s when I decided to bring Brock to you. For more than four years, I wrote in a journal about the things that worried me: his lack of successful potty training, delayed fine and gross motor skills, always needing a set schedule, obsessive and repetitive behaviors and not maintaining eye contact. Although his vocabulary was advanced for his age, his words didn’t fit with what was being discussed. He would scream as if he were in pain every time his teeth and hair were brushed. And when his normal schedule was disrupted, he would have what I thought at the time were severe panic attacks. It was all very concerning.

Lindsay Jolly.2-001

When we walked into your office that day, I wasn’t very hopeful after my past experiences. After being laughed at, I was starting to think that maybe it was me. I thought I was a bad mom, even after reassurances from my family and friends (the people who truly know me) that I wasn’t. When you spend your child’s whole life trying to do everything in your power to get help for him with no results, it does something to a person’s mind. I was in a dark place emotionally.

I’ll never forget when you walked into that room. For whatever reason, I was immediately set at ease. You looked at me like I was a person and not an inconvenient part of your day. You truly listened to all of my concerns as I was once again in tears. I practically begged you to help me help my son. You said the words I was waiting to hear: “I believe you.” That was the most monumental moment of my life. At that moment, all my doubts slipped away. I knew things would become easier for Brock. Because after all, it was all about him. My son needed those three words just as much as I did. Those three words completely changed his life for the better in the 18 months since.

Brock was officially diagnosed with autism and sensory processing disorder. He’s now in the first grade, and in the past year, he has made many strides. A year ago he couldn’t read, and now he’s reading at the same level as his peers. He wrote his name for the first time, and he gets services through the special education department at his school, along with occupational therapy, behavioral therapy and play therapy. I even got him a dog who helps calm him during meltdowns.

I don’t know where he’d be at right now if you didn’t open all of these doors. I don’t even want to think about it. But what I do want to say is thank you. Thank you for treating us like people and for truly listening to my concerns. I’ll forever remember you as the doctor who changed our lives. Because you did. My son deserved to be heard, and you heard him. Even though he faces an abundance of challenges each day, we now know what we can do to help him overcome and cope with them.

My son wouldn’t get out of bed this morning.

All kids do that.

No, what I mean is that he refused to get out of bed and I had to carry him out of his room.

All kids do that.

No, I mean that I had to lock his bedroom door so that he would not get back into bed.

All kids do that.

No, I mean that he threw himself at the door, beating it and ramming his head, shoulders into it. His skin was getting red spots on where he was hitting against the door.

Do all kids do that?

I had to wrap my arms around him and guide him to my rocking chair to try to soothe him.

Do all kids do that?

He was feeling powerful anxiety. He was terrified of going to school because he doesn’t know how to deal with the other human beings there. My son who scores off-the-scale on standardized tests can’t figure out the social rules, and that terrifies him, too.

Do all kids do that?

My son was in pain and trying to get away from what scared him.

My son was in pain and I had no idea how to help him.

Most of the time “all kids do that” is well-meaning, intended to be reassuring that my son is not different, as if different was something to be avoided, something to be saved from.

There are times when it is hurtful, when it has the effect of dismissing my concerns and worries, when it is obvious the listener is the one uncomfortable with “different.”

It becomes clear that I have not communicated well what it is I’m trying to say, either because I can’t find the right words, or I’m reluctant to describe behavior I know that all kids do not do, because I don’t want to see the fearful “different is to be avoided” expression on the listener’s face.

Most of the time I am polite. Most of the time I accept the comment assuming the well-meaning intention and roll on. But in my head I might be having the above conversation.

Maybe irritation flashes across my face — a split second that, if the listener is observant, reveals that in my head I’m shouting, “How the hell do you know?”

Sometimes there are people who don’t say that. They get a look on their face that tells me they understand “My son wouldn’t get out of bed this morning” is code for all the rest of what happened, that my placid comment is really the tip of the iceberg. Maybe they aren’t afraid of “different.”

Or maybe they simply see my own fear and pain that my child is in pain. They don’t try to problem-solve for me or try to give me advice until I ask for it. They listen with kindness and compassion.

When I find those people, it is like a glass of cold water in the desert, fresh air in a stale room, sunshine after a storm. I want to hug them.

Follow this journey on Autism Mom.

Lead photo source: Thinkstock Images

A 2012 study found that 35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school, according to Reuters. And considering more than 3.5 million Americans live with an autism spectrum disorder, that’s a lot of people with unique perspectives and talents whose contributions to the workforce are being lost.

The Mighty teamed up with Autism Society to ask our readers for one piece of advice they’d offer employers about working with people with autism.

This is what they had to say: 

1. “First you have you give [people with autism] a job, a chance to try. Without that, nothing else matters.” — Teresa Duncan Johnson

Teresa Duncan Johnson says 'first you have to give [people with autism] a job, a chance to try. without that, nothing else matters.'

2. “Don’t assume we’re all the same. No two people with autism are exactly alike.” — Alison Loughlin

3. “Be very clear on your expectations.” — Valerie Glassman Mcguire

4. “Find out what their strengths and weaknesses are and see if you can find tasks for them that compliment their strengths. Also, be compassionate and understanding, it can go a long way.” — Maggie Bee

Maggie Bee says 'be compassionate and understanding, it can go a long way.'

5. “Understand that people with autism have a different way of thinking.” — Brian Mah

6. “Let [people with autism] show you their gifts.” — Pamela Berzas

Pamela Berzas says 'let [people with autism] show you their gifts.'

7. “If [people with autism] ask for time to gather their thoughts, allow it. Encourage it, even. Many meltdowns can be avoided with a few minutes of isolation to reduce sensory overload.” — AutisticalU, Facebook page

8. “Keep in mind it will be different for everybody. The fact that you once met your neighbor’s cousin’s nephew’s friend with autism does not mean you understand autism. Each person is unique.” — Tarina Beatty

9. “Do not underestimate an individual’s ability.” — Laura Burrell

Laura Burrell says 'do not underestimate an individual's ability.'

10. “Presume competence, but also be patient when an employee faces challenges.” — Alicia Kobylecky

11. “[People with autism] see/perceive things differently than most of us. Stop and try to see things how they might. It will boggle your mind to see things in another light.” — Dina Harrison

12. “Don’t judge us, especially if we stim.” — Mandy Rain

Mandy Rain says 'don't judge us.'

13. “Learn everything you can about autism, but don’t forget that we are individuals. Get to know me. What motivates me, what could cause a meltdown, what you can do to help me succeed. Take the time to ask my parents/teacher all about me, they know me best.” — AnneMarie Bill Martin

14. “If verbal instructions don’t seem to be working, try print versions based upon literacy skills. My sons are very bright, but you could tell them all day and they’ll miss part of it. Give it to them in written form, success every time.” — Elaine Bowen

15. “Don’t ever shout out orders. Always be calm. I know my daughter would freak out and shut down if things were too fast-paced and instructions were being thrown at her left and right.” — April Charisse

April Charisse says 'don't ever shout out orders. always be calm.'

16. “Structure and routine will help create the best environment.” — Laura Hershberger

17. “Be very concrete. What you ask for is what you will get.” — Christi Roberts

18. “Same rules should apply to every human. Everything we learned in kindergarten still apples. Kindness, acceptance and patience are required. Also, research please. Some people think when they know one person on the autism spectrum they know them all. Well, each person is unique. Just don’t forget that.” — Migdalia Matos Convery

19. “Acknowledge their humanity above all else.” — Kenyatta Norwood Horne

Kenyatta Norwood Horne says 'acknowledge their humanity above all else.'

 20. Accept [people with autism] for who they are and treat them with respect like everyone else.” — Kayla Locke

21. “Even if [employees with autism] don’t look at you and communicate with you, talk to them. Tell them about your day, tell them you hope they had a good day. Treat them like you would anyone else, even if they may not always be able to respond and communicate back ‘appropriately.’” — Courtney Reitz

22. “Acceptance. Period, the end. No need for further comment.” — Cassandra Budreau-Dunn

23. “Be direct, honest and patient, don’t touch, yell or swear. You will have an amazing employee.” — Christine Joseph-Davies

Christine Joseph-Davies says 'be direct, honest, and patient.'

24. “Understand how sensory overstumulation can be prevented, how to help when someone is overstimulated, and that most people with autism are much better with visual instruction and cues rather than verbal. Know how to communicate best with your employees and how to help them.” — Kathleen McKenna Nelson

25. “Don’t be degrading if we need reminders or if we don’t automatically know something that seems obvious. Our brains may work differently than yours, but we’re still well aware when you’re treating us like we’re lower than you.” — Emma Wozny

Emma Wozny says 'don't be degrading if we need reminders or if we don't automatically know something that seems obvious.'

26. “Change and transition are difficult for me. Give me time.” — Erin McKinney

27. “If all your employees were as dedicated, had such meticulous attention to detail, were as honest and reliable as people with autism, you wouldn’t have any concerns.” — Cheryl Joyce

28. “Keep an open mind and give us a chance. My current boss did, and I’m doing great at my current job!” — Sally Senft

Sally Senft says 'keep an open mind and give us a chance'

29. “Make sure you spend individual time connecting with the person. Earn his/her trust.” — Kera Maxwell Washburn

30. “You might have the best and most loyal worker on your hands when you learn to tap into their strengths.” — Marisa Ulrich

Marisa Ulrich says 'you might have the best and most loyal worker on your hands when you learn to tap into their strengths.'

*Answers have been edited and shortened. 

There have been a lot of things written about what not to say to a parent of a child on the autism spectrum. Do a Google search and a lot of guidance comes up.

One of my favorites was written about two years ago by a blogger named Lexi Magnusson. She listed six things not to say to the parent of a child with autism, which includes not only why these things should not be said, but also offers suggestions of what could be said instead.

When we disclose our son is on the autism spectrum, I usually hear the phrases mentioned at numbers 2 and 5 on Lexi’s list: “He’ll probably grow out of it,” “God knew you could handle this!” and “Special kids for special parents.”

We’ve also heard, “I’m sorry,” which is really not applicable because there is nothing to feel sorry about. We don’t feel bad about it. Our son’s diagnosis was a watershed moment. It helped us get him the services and support he needed, which made a huge difference.

“You can’t tell” is another phrase people tell us. While it doesn’t bother me, I think it says a lot about the general lack of awareness in society about all of the variations of autism.

A comment that does bother me: “You’re lucky it isn’t worse.” It upsets me about what it suggests about those who might have it “worse.” Our son’s autism is what it is. We don’t need the magic of luck as consolation or confirmation of anything.

So how should people respond when I tell you? Here are my tips:

1. Don’t get hung up on the word autism.

As soon as you hear the word autism, you may start going through your brain’s database for a definition so you know how to respond. The movie “Rain Man” might come to mind, or maybe some other well-known autism characteristics that you might not be seeing in my child.

Then you might feel lost because you don’t have any ingrained social guidance on how to respond. And so you say one of those things you shouldn’t say because you don’t know what else to do.

Just let it go. Autism is so complex and so varied that unless you’re an expert, no one can expect you to be able to recognize all the facets.

Simply take my word for it. Don’t feel like you need to do anything and listen to the rest of what I am saying.

2. Pay attention to context.

There’s a reason I have told you about his autism diagnosis, and I guarantee it’s not to elicit your sympathy.

It might be because I want you to understand why my son may act differently in certain situations. I may be trying to explain why my family might do things differently than expected. It might be because we need your help with something.

3. Listen to what I’m saying.

Chances are good that an appropriate, on-target response will be obvious if you really listen to what I’m saying.

4. “Thank you for telling me.”

If you still can’t think of something to say, remember I have chosen to disclose private information to you. You can acknowledge that confidence with a simple thank you.

Follow this journey on Autism Mom.

Lead photo source: Thinkstock Images

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