To Myself on the Day of My Son’s Autism Diagnosis: Here’s What You Won’t Hear

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Dear Sazini,

I know you thought today’s visit to the hospital would be quick and easy, simply a matter of picking up the piece of paper that confirms what you already know. You accepted Ethan’s diagnosis of autism several months ago. However, after you receive the official diagnosis, so many questions come flooding at you as you wait for the psychiatrist to finish the call he took on his flip-phone.

Will Ethan ever talk?

Will the meltdowns stop? When?

How will you choose from all the available therapies? There are so many!

Will you be able to handle everything without your family close by?

You have a long road ahead of you, and I want to tell you something you won’t hear for a while and that will take you several years to accept: You have to prioritize taking care of yourself. I hear your arguments: right now you have to focus on Ethan, he needs early intervention. Between work, reading about autism until the wee hours and everyday household duties, your name barely makes the list!

Here’s the thing: When you eat well, get enough sleep and exercise, Ethan will benefit. You will be a better mom when you are not exhausted and your mind isn’t foggy. I’m telling you this to save you from waking up in three years’ time with excruciating pain because your neck and shoulders have locked in place from carrying all that tension. (And by the way, please use that gift certificate to the spa. Your guilt about using it is irrational.)

All the talk on the importance of early intervention makes you feel like you have to grab it all, do it all, for fear that you might leave out the essential therapy that will help Ethan. It’s true that early intervention will be helpful for you and Ethan, but it’s OK to take your time choosing between therapies and therapists. Not all of them are a good match. Trust your instincts; you know more than you give yourself credit for. One day, you will grab Ethan and walk out of an evaluation with a therapist because you’ll know it’s just not going to work out. After that, you will learn to interview potential therapists, and eventually, you are going to build a great team of professionals who work with you and inspire you. You will call them the “A-Team.”

There’s one more thing you need to know: You are now a “waiter on lists.” There will be a list to get a social worker, for the special needs school, for the social skills group, and on and on. You will also wait for almost two years for the early intensive behavior intervention therapy provided by the government. You will feel angry, frustrated, abandoned, sad and disempowered on that waiting list. But those months of feeling forgotten on a waiting list will inspire you to help other parents.

I know that right now you feel like you are in free-fall. As unfathomable as it seems, you are going to land on your feet. You will be happy and feel in control. You will meet many people who will need no explanations — they will just “get” you. They will become part of your community. They will be on their own journeys, but you will find strength in each other, laugh and cry together.

Ethan will make tremendous progress and start to feel more comfortable in his own skin.

He will learn to talk.

He will sleep through the night.

He will overcome many sensory challenges

And yes, there will be days, then weeks and even months without a single meltdown.

Remember to hold on to the good times with Ethan, because there will be many. Your life will be filled with joy, love and a dash of adventure.

Knowledge and acceptance of people with autism continues to grow, and we really have no idea what the future holds. Help Ethan discover his calling so he can live a happy, fulfilled life.

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Sazini and her son.

The Mighty is asking the following: Write a letter to yourself on the day of the 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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Rosie O'Donnell Facing Backlash After Making Autism Joke

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Comedian Rosie O’Donnell is facing backlash form a recent joke she made involving autism.

On Sunday, February 7, at Caroline’s Comedy Club in New York City, O’Donnell joked she’d rather have “autistic triplets” than each of her teenage children, the New York Daily News reported.

“I had four teenagers when I decided to adopt a newborn baby. You might ask why,” O’Donnell said. “I needed to remind myself that I actually do love children, because I would trade each teen for autistic triplets. I’m just saying I would.”

O’Donnell, who has fought publicly with her estranged 18-year-old daughter Chelsea O’Donnell, pointed out that she has children on the spectrum herself and then went on to speak about the difficulties of raising teenagers.

Social media users responded to the news of O’Donnell’s joke on Twitter, some defending the comedian, who has raised money for autism charities before, and others criticizing the comedian. O’Donnell responded to one Twitter user who took offense to a child with autism being used for “the punchline of a joke.” O’Donnell responded, saying, “I am the punch line — not your kids.” She later added, “Our kids — mine too. The spectrum is vast.”

A representative from the National Autism Association spoke harshly of O’Donnell to TMZ, saying the comedian has crossed a line for the sake of a “desperate, low-blow joke.

In response to the criticism she’s received online and from autism advocates, O’Donnell accepted fault for the joke and said it was never her intention to offend.

“Although it was not my intent to hurt people, I realize I did. It was my fault.” O’Donnell told TMZ. “I have two children with spectrum disorders. I’m aware of the challenges and stigma associated with autism.”

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When a Meeting at School for My Son With Autism Made Me Cry

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I didn’t plan on crying today. In fact, I rarely cry at all. My husband and I talked about this very thing yesterday. I internalize most of my feelings and try to stay cool, calm and collected in almost any situation. Today, I could not hold it in.

Just yesterday we had our very first appointment with a developmental pediatrician. My husband and I left the visit feeling pretty good about the therapy and help we have in place for our son Drake. We discussed his increasing anxiety and went over several other concerns. She saw no need to change anything.

But on the way to therapy this morning I started second guessing myself again. I started thinking about the future and about kindergarten. What we have in place now is working for Drake; the thought of altering that in any way scares me.

But I didn’t cry because I am worried about Drake. I didn’t get in my car and totally lose it because of the long road ahead. Today, I cried tears of complete joy. I don’t think I have ever cried so hard and so long over something that made me so happy.

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Jill’s son, Drake.

Earlier today I met with Drake’s preschool teachers. I went into the meeting knowing what to expect. I knew Drake was doing well, and I felt confident his days were mostly good. I walked through the doors of that school with my wall totally up. I was prepared to hear Drake’s strengths and weaknesses. What I didn’t expect was two teachers looking at me with tears in their eyes, telling me how amazing my little boy is. I can hardly type, even now, without my eyes filling with tears.

I am a happy, blessed, emotional mess today. I felt so blessed to be Drake’s mama. I honestly do not know what I did to deserve him. The challenges that can come with autism are sometimes hard and make me worry about the future. But despite any worries and fears, I feel so extremely blessed.

These wonderful teachers, who just met Drake in September, told me over and over how wonderful my child is. It was honest, raw and heartfelt. One teacher told me several times how much she loves Drake. He has exceeded all expectations. The more they spoke, the more I felt that familiar tightening of my throat. It was all good, so good to hear. The wonderful things they said about my child are still playing through my mind: “He stays on task and works hard, and his play skills have increased.” “He is sweet, animated, loving and a joy to be around.” These are just a few things she said about my sweet boy.

Drake’s report from his teacher.

She emphasized how the other kids approach Drake and talk to him, and in turn he listens. She told me that Drake being in this class with 11 other children is helping them. Drake is teaching them to be understanding. These children treat Drake as one of their peers and friends. It is all so beautiful.

What makes me cry is the joy I saw on the teacher’s face as she talked about how well he is doing. That’s the good stuff. The kind of stuff that gives you chills. The very stuff that has left me feeling at peace, happy and so exceptionally blessed that God made me Drake’s mama, as I believe He did.

I truly believe he is doing so well and exceeding all expectations because he feels empowered by the phenomenal support system he has at therapy, school and home. So many people love my child, and I’m so thankful they do.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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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When I Became the Primary Caregiver of My Brother on the Autism Spectrum

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Since my 20-year-old brother, John, was born, I’ve helped care for him. After John’s autism diagnosis, my participation in his caregiving increased. Over time, we created a close bond. We watch movies and TV, make up silly stories and have attended a variety of concerts. Eventually, I became John’s confidante, social etiquette coach and playmate. If John wanted to do something with me, I usually made time for him. But if I didn’t have time for him, I didn’t hesitate to say no. I knew if I didn’t have time for John, then someone else at home could spend time with him.

During the past few years, Mom and Dad’s work responsibilities increased. Since John and I are so close, I became John’s primary caregiver. My responsibilities also include helping John with his college classes. At first, this arrangement was beneficial to all. Then, I started to struggle between balancing John’s needs and wants with my own obligations, needs and wants. Saying no to John started to become more difficult due to the lack of time Mom and Dad could spend with John, if I was available.

Most of last year, Mom was ill. As the family prepared for Thanksgiving, Mom was diagnosed with cancer. Before we knew it, Mom was going into emergency surgery to remove a large cancerous tumor. With Dad focused on Mom’s care, I took over running and maintaining our household. This added responsibility took more attention and energy than I realized.

Every day had drastic changes. There was little structure or stability for John. With no guarantee of Mom’s outcome and John’s intense fear of death, John struggled to understand and cope with this situation. He reacted by isolating himself and having more meltdowns. As John’s caregiver, I felt like I’ve failed him. When he got a cut, I could put a bandage on it and tell him everything was going to be all right. But now, I couldn’t guarantee nor protect him from cancer’s stark reality.

Because of Mom’s cancer and treatment, I struggle to say no to John. He asks me to spend time with him when he feels the loneliest. By saying no, I feel as though I’m neglecting John emotionally, when he needs it the most. When I see the disappointment in John’s eyes, it feels like a knife twisting in my heart.

During this phase of caregiving, I’m learning to set reasonable boundaries for John and me. And sometimes I have to say no. Despite how bad I might feel saying no, I’ve learned three reasons why it’s OK to say no. One, I need to prioritize my obligations. Two, I have to care for myself. And three, finding a middle ground. Being a caregiver, it’s so easy to want to do everything at once. Yet, by adding more unneeded pressure, you wind up overwhelmed and stressed, and you end up being less productive. To help prioritize my obligations, I write a to-do list, ordered from most to least important. It helps me schedule my day.

A week after Mom’s surgery, I had my semester finals. After turning in my last final, my professor, knowing about Mom’s health, advised me, “Remember to take care of yourself.” As a caregiver, you spend so much time caring for others that it’s easy to put your needs last, or ignore them. There have been times I’ve neglected my needs, to exhaustion. This not only hurt me, but also made it also make it difficult for John to function through his day. If you can’t take time to care for yourself, and you become ill, how can you help those who depend on you?

With John’s input, I try to find a middle ground daily, between home obligations, self-care and fun time. Getting there is a daily challenge. With every day’s priorities changing at a moment’s notice, it’s hard to make a schedule. So the focus is put on finding stability through the middle ground. There are days where everything goes smoothly, with plenty of space for fun time. While other days are so rocky and stressful, and I feel like bed time couldn’t come sooner.  But we aim for realistic options for both of us.

Being John’s caregiver has greatly impacted my life. John’s influence can be seen in many aspects of my life, from my college major to my sense of humor, and even my career aspirations. It’s never been easy. At times it’s overwhelming. But most of all, it’s been an amazing, yet unpredictable adventure for both of us, with no sign of stopping any time soon. Nor do I ever want it to end.

 

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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How I Tell People I Have Autism

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Hello everyone, Production Intern Andrew Levin here with a new video. A common question people with autism get asked is ‘How do you tell people you have autism?’

I have my own method of telling people and I’d love to hear your methods as well! Share your method below.

If you have any ideas for videos you’d like to see, please contact me at [email protected].

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The Nicest Thing You Can Say to Me as a Person with Autism

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Hi everyone, Mighty intern Andrew Levin here with a new video about one of the nicest things you can say to me as a person with autism.

If you have any ideas for videos you’d like to see, send me an email at [email protected].

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