To the Parent Hesitant to Find Out If Your Child Has Autism

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To the parent(s) who know deep down that an action needs to be taken to get a diagnosis for your child, this letter is for you.

I know you’re afraid of the answer. Please don’t be afraid.

A diagnosis isn’t the end of the world. It isn’t a life sentence or a death penalty. It’s just a new path for your child, different than the one you may have had in your mind.

As someone on the autism spectrum, I understand.

I know you don’t want your child to get treated differently in school, but a diagnosis will help them longterm. Most important, it will help them understand why they’re a little bit different than everyone else.

I was diagnosed with a learning disability when I was 7, but I didn’t get a bit of relief until I was diagnosed with Asperger’s syndrome at 19. For me, the fact that I couldn’t completely understand myself led me to want to take my own life.

An autism diagnosis is not the end of the road, it doesn’t mean your child is unintelligent and it doesn’t mean he or she will spend all their time in special education classes. But a diagnosis does give you the opportunity to defend your child’s rights. A diagnosis does give them a chance at occupational therapy or speech therapy or something along those lines that may come in handy for them.

The sooner you get an answer for your child, the better.

Please realize you may need to explain something a typical child will automatically know like: bras, deodorant, how to make friends, what is and isn’t OK to say, how to keep a conversation going and even sarcasm. That’s all OK.

Please explain autism to your child. It will help, I promise.

Please understand that meltdowns may occur at home but not at school, and that’s normal. This happens because at home they can relax and be free of society’s social pressures/sensory overload. I’m 26 years old and this still happens to me.

From one person on the autism spectrum to a parent of someone on the autism spectrum, please know this: even if you don’t want your child to be treated differently, it’s important to get that diagnosis.

Sincerely,

An Adult Aspie Who Wishes She’d Known Sooner

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4 Parenting Lessons Only My Anxious Children Could Teach Me

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I decided I wanted to be a child therapist long before I ever had children. I finished graduate school before I even began motherhood. I knew all the signs and symptoms of every childhood mental health disorder before my first child entered the world. You would think I was well-prepared. You would think if anyone could handle anxious children, it would be me. Apparently the universe shared the same sentiment — it dutifully delivered me child after child with some form of anxiety in their DNA.

At first I was in denial, quickly rebuking my education and profession by thinking, “Come on! These things seem normal to me. What’s the big deal?” Eventually the reality started to sink in. No, not every parent has to worry about going on the highway because their 3-year-old starts to panic. No, not every parent has to talk to their 5-year-old about what will happen when they die.

Twelve years and three children later, I’ve embraced anxiety as much as I embrace my children. My children have taught me more about life than any textbook ever did.

They’ve taught me…

1. That I need to believe in them — not in their fear.

Early on I found myself accommodating my child’s fear. She doesn’t like highways — I should find an alternative route. She doesn’t like elevators — let’s find the stairs. But over time, I realized she was more of a fighter than I was allowing her to be. She was tired of her worries and wanted them to go away. Instead of turning away from her fears, I began to hold her hand and we faced them together. One small step at a time.

2. That my fears aren’t always their fears.

Sometimes I find myself inadvertently putting my children and their worries into tiny, predictable boxes. I play out scenarios in my head and anticipate how situations will unfold. Luckily, I’ve often been wrong. It make me realize I can’t underestimate my children. I think I was more nervous about kindergarten than my son. I walked him to the gate on the first day waiting for the meltdown. Waiting for the battle to start. Wondering if the school counselor was in on the first day. He turned to me and said, “You can go. I’m good.” And he didn’t look back. Not once.

3. That my words can tear them down and lift them up.

From my experience, anxious children tend to be much more sensitive in general. My kids are no exception. They love hard and hurt hard. Sensitive children often have the biggest hearts. My 3-year-old is the first to notice when I’m having a bad day. She’s also the first one to sulk in a corner for hours when I correct her behavior. She is the one who frequently asks, “Are you proud of me?” five zillion times a day. I realize now my words have weight. They’re actively shaping the way she views herself. I’ve learned to be cautious with my words — as they can tear my little girl down in a heartbeat or lift her up. I’m in the process of helping her develop her own inner dialogue.

4. That my children are watching.

They are watching my reaction. They are watching my emotions. They are watching my choices. Emotions are contagious, especially when your children look for you to be their anchor. And my anxious children are observant. When I’m nervous, they’re nervous — sometimes sadly when they wouldn’t have been otherwise. I’ve had to develop a good poker face. Sometimes I can do this and sometimes I fail. But, I always try my best.

I’ve learned to stop worrying about their worries as much as I can. I take one day, one fear and one phobia at a time. I remember when my oldest daughter couldn’t sleep unless she was holding my hand. I thought she’d sleep next to me forever. She is now 12 and would deny that ever happened. (Oh, it happened.) I remember not too long ago when I thought my youngest would never go poop in the potty. Her fear was palpable — she walked around holding her bottom saying, “I no poop. I no poop!” That too has passed. We are on to the next challenges life inevitably brings but with a new belief. A belief in my children. A belief in their strength. In my strength. A knowledge we can get through whatever life wants to throw at us — one day at a time.

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Jockey and Brother With Down Syndrome Break Down More Than One Barrier

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Meet Australia’s new favorite horse-racing siblings.

On Tuesday, November 3, jockey Michelle Payne became the first ever woman to win the Emirates Melbourne Cup, which is one of Australia’s most prestigious Thoroughbred horse races. Payne says she couldn’t have done it without her brother, Stevie, who has Down syndrome and works with the horses at Darren Weir stables, BuzzFeed reported.

Michelle Payne, 30, was the only woman in the cup and rode a horse named Prince of Penzance to win the $6.2 million race at Flemington Racecourse, CNN reported.

Her brother is known as one of the best “strappers” around, a term that means person who looks after racehorses. He gave his sister a great start to the race by picking out number one at the barrier draw, which gave her a favorable start gate.

I think it’s great for other people with Down syndrome — to see how capable they can be in normal life,” Payne told ABC. “Stevie can pretty much do anything, and look after himself when he’s on his own.”

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The siblings are the two youngest members of the Payne racing family, which is well known in Australia. Of the ten Payne children, eight became jockeys.
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Watch the triumphant moment Stevie Payne leads his sister and the winning horse in a victory lap in the video below:

VIDEO: Enjoy the moment strapper Stevie Payne leads 2015 Melbourne Cup champions Michelle Payne and Prince Of Penzance back into the yard.

Posted by Racing.com on Monday, November 2, 2015

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To the Woman Who Said I Didn’t Have the Experience to Help My Brother

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To the Woman on the Bus,

You probably don’t remember me; it’s been a while. But about 15 years ago, you taught me a lot. You taught me that even though our relationship may be different than other siblings, at the core of it all, I’m my brother Scott’s sister, his only sibling. You taught me that despite how hard a life it can be sometimes (most of the time), being Scott’s sister has made me a stronger and kinder person than I would have ever been had I grown up without a brother with severe developmental disabilities.

You taught me my relationship with Scott will shape the character of the woman I become.  And I’m luckier for it.

We were leaving one of the Disney World parks and heading back to our hotel room. Disney World was a regular vacation our family took. Most, if not all, of Scott’s communication was through a spelling board, but he always made it clear when he wasn’t into something. Disney World was one of the few places we knew he loved. That particular day I was trying to give my parents a break and had taken the bus into a park with Scott and a friend who was on vacation with us. About three hours in, we had reached our limit, and I could feel an anxiety attack coming on. I knew his signs, and it wouldn’t be long before the hand-wringing started along with loud yelling.

About five minutes into the bus ride, he was in a full-blown panic. This was before there was a lot of information out there about low-functioning kids. This was even before everyone had cell phones. My parents had worked hard to treat Scott like any child was treated, and as a family, we had created coping techniques in case an “episode” happened in public. To be honest, there weren’t many, and most of them were just getting through the worst parts until we could get somewhere safe and quiet.

After a few minutes, you came up to us. You leaned down and started to talk to Scott. You tried to grab his tense fists; you tried to give him a hug. This was one of the first times it was just Scott and me while he was losing control, and it was the first time a stranger had approached us without our parents. I had no idea what to do.

When I asked you what you were doing, you simply said, “Well, I teach special ed, and you clearly don’t have the experience needed to deal with a behavior like this.” It’s been 15 years, and I still remember what you said.

But I did know what to do. I did have a plan. Maybe it wasn’t extensive and maybe it was behavior triage, but I knew what I had to do. I knew Scott hated being touched when he was in the midst of a behavior. I knew if I could just make it to the resort, I could let him walk it out after we got off the bus. I knew if I could just get to my mom and dad, it would be OK.

But you didn’t ask permission. You didn’t even say hello before you tried to take over. Looking back, I’d like to think you felt you were being helpful. But being helpful would have been taking the time to know us before you stepped in. Being helpful would have been sitting next to a scared 17-year-old girl and reassuring her that no one was staring; and even if they were, who cared? Anything other than what you did would’ve been helpful.

I have to admit I probably could have handled you better. I probably didn’t have to tell you I would tell Scott to kick you in the shin if you didn’t back off. I could have done a lot of things differently that day.

But I was kid. You were the adult.

I never worried about speaking up for Scott or myself after that. If I could handle a Disney World bus ride on a hot summer day, I could handle pretty much anything for my brother. And I’ve been able to handle you — in the many forms you’ve shown up in our lives since.

Scott still can’t tell me he loves me with words or drive to our apartment when my mom gets on his nerves. I still get annoyed he has to listen to loud music at the dinner table or worry when my parents don’t sleep for a few days because he’s having a rough month. Our relationship will continue to be complicated and challenging as we get older. And Scott will continue to shape the person I am, even the mother I want to be one day, and that’s a good thing.

Because till the day I die, I’ll be Scott’s sister. And I’m OK with that. Just look at his smile. Wouldn’t you be, too?

Yours,

The Girl From the Bus

Stefanie Shaughnessy.2-001

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When You Become the Mom Others Turn to After a Child’s Diagnosis

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My friend’s child just got diagnosed with a brain tumor.

Unfortunately and sadly, I get that message often because my own daughter, Reese, was diagnosed with a brain tumor in 2012. My friends come to me for advice and want to know if their friend can message me, if there’s anything they can say to their friend and what should they do. More often, I get messages that a friend’s child was diagnosed with another form of cancer, and they want to know what to bring to the hospital.

These messages are never a bother. They are so welcomed. I consider the fact they come to me as a compliment of sorts. It isn’t a compliment I necessarily want to receive, since I wish I knew nothing of the subject, but it’s one I take anyway. The people who message me trust me enough with their hearts and emotions to invite me into their private lives.

I say a lot of the same things to the people who want to help their friends. I remind them to do things instead of asking what they need. I tell them to bring food or give their friend a Visa gift card. Pay for a maid service, pick up their other children from school or give them a hug.

But when I finally say hi to the new mother whose world has been thrown upside down, I can see who I was. I can see how far I’ve come in many ways and how time doesn’t change things.

I notice how quickly these mothers adapt. Three years ago, I was that mother who felt as if I were in some sort of cage where no one could see or understand me. There were tears in their eyes with absolute sympathy and love, but they were still on the outside. I had a few people around who did understand, and really, that’s all that I needed — someone to say, “Yes, I know.”

And now I’m that person. The blessing of it all is watching how these moms grow and change. Once scared mothers now throw medical dialogue around as if it’s their native language. They list procedures and talk about medicines like a nurse studying for a test, but they’re just moms like me.

I’ve had one-minute conversations with people who had a question about chemo or a test. I’ve talked to people for hours just about nurses or hospitals. They ask me, “What would you do?” All of this goes both ways, since we need each other.

But I’ve also talked with mothers late into the night about their child, only to pray into a puddle of tears as their child takes their final breath months later. I’m so grateful these moms have let me into their lives for that tiny sliver of time. And I’m even more grateful when they let me continue to stay in it with them.

I talk to friends of those mothers who just want to understand. Sometimes they come asking medical questions that I try to answer as best as I can. Sometimes they feel desperate to help them, and the only thing I can do is say to love them. That is often the hardest thing to explain.

All of this reminds me how much our journey is about others. We aren’t alone in a cage. We’re part of a community where we all need someone.

I was taught early on — through other mothers’ kindness and love — that it’s important to take our own struggle and turn it into strength for someone else. Thank you for letting me be that person for some of your loved ones, even if just for a moment of time. Because no matter how much time goes by, I will never forget the fear I felt not knowing what was going on with my child. I will never forget crying until I fell asleep in the ICU.

I hope I never forget. Those feelings are what propel me to try harder when I feel as if I’m on empty. I’ll appreciate the tantrums as well as the smiles, and I’ll enjoy every day — even the terrible ones I superficially want to end.

amanda.1-001

Follow this journey on This Year’s Love Will Last

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To the New Mom Who Got the Diagnosis She Feared for Her Baby

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To my former self, the one with a fresh bundle of pink loveliness in her arms and a fresh diagnosis…

To the new mommy of a child with special needs, the mommy whose scariest prediction became her reality…

The one standing on a ledge, ready to jump to any and every bad conclusion. The one whose sadness rocked her so hard that her body shook, her appetite went missing and her thoughts consumed her with darkness. You were enveloped in your grief, and your vision was narrowed and negative. You did this for a solid week. Then you returned with vengeance.

Don’t feel guilty about your thoughts. Don’t feel bad about staring at that clear crib in the hospital and wondering how you could love your baby. It didn’t take you long. You researched, reached out and started writing. Now you love your baby so much. You see his beauty as one that soars above all other beautiful things combined.

You needed to be sad. Everyone fought for you because of it. They deflated your biggest fears. And you became stronger and smarter. As tears fell right on your baby’s cheek, you pushed through to acceptance, and you let go of judgment and prejudice. You’re a better human being because of it.

You were right when you predicted your baby would have Down syndrome. But whatever it was you feared about the future isn’t here. I’m still not sure what you feared. You didn’t know about possible heart defects or thyroid problems or neurological scares. You knew nothing of hearing loss, vision issues or a higher risk for cancer. I think you were afraid no one would love you or your baby. You couldn’t have been more wrong.

There’s nothing to fear, my dear. Your baby is so loved, it’s impossible for me to explain the enormity of it. But after a short bout of self-pitying and despair, you’ll see. And a short while after that, you’ll barely recognize the shallow, pregnant woman hoping people wouldn’t think her baby was going to be unlovable.

Your Judah is just about a year old now, and your life contains more nourishment than all your days before him combined. Now you have a clearer vision of what’s really important. Now you and your husband have the most incredible bond. You share tears when a mom comes up to you at Target and says your son is like her son and an incredible gift. You trade stories and beam with pride from a successful therapy session. You two know how to take care of yourselves and your relationship so you can be the best for your babies.

You’ve “met” some pretty spectacular people through social media, too. People trying to send people with Down syndrome to college and setting up a foundation to get little ones with Down syndrome adopted. You’re part of a community where good feelings wrap around you like a blanket.

You’re here. You made it. You want to advocate, love harder, abandon your old inept ways and be worthier. You’re a more valuable person because of your journey.

Thank goodness it was always innate for you to persevere. Thank goodness it was never in your DNA to lose hope. Instead, I believe you let God give you a piggyback ride, and you loved. Judah is your reward for that. Your life is your reward for that. And you are living the most magnificent existence right now.

Follow this journey on Finding the Joy.

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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