10 Things I Recommend Doing After Your Child’s Autism Diagnosis

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I had the honor of being interviewed by Kerry Magro of Autism Speaks for his cable television show, “Different is Beautiful.” It was wonderful meeting Kerry and talking about my writing and my life with the boys.

Kerry asked me a variety of questions that day, ranging from how I got started with blogging to what some of my initial reactions were when my eldest son was diagnosed with autism. I enjoyed speaking about both topics, but it was the last question that stayed with me.

By the time my son, Justin, was diagnosed, I’d noticed his differences for almost a year — putting a label to them was almost a relief.

Eleven years ago, diagnoses for children under 18 months weren’t common. Justin was 17 months old when he was diagnosed. But today, some children are given a suspected diagnosis as early as 6 months old, and their parents won’t have a year to ease into their suspicions that their children are developing differently than neurotypical children. For many parents this label might come as a shock. Their first reactions might be denial, anger, fear or wondering if somehow they caused the diagnosis.

At the very least, most parents will probably feel overwhelmed.

There are things parents of newly diagnosed children can do in the first weeks and months that can help those overwhelmed feelings. Here are my top 10 things I did 11 years ago and recommend to all of you:

1. Ask for help. It may take you a while to figure out what you need, but ask for it. People will generally want to do something for your family but won’t know exactly what to do.

2. Make friends with other parents of autistic children. They can be wonderful resources and provide invaluable support.

3. Find an autism support group. It may take a while to find the right fit; don’t get discouraged, keep trying!

4. If you’re married or in a relationship, make time for it. You will need to support each other a lot in the first few months after a diagnosis. Make sure you get out and take some childless time for yourselves.

5. If you know you’re going to need to see various professionals for your child, make the appointments immediately. Sometimes it takes six months to get into an office. Further diagnoses may help your child get treatments or therapy.

6. If it’s too hard to tell people, ask a friend or relative to share your child’s autism diagnosis with others. I did this with our second child on the spectrum, and it made life a lot easier.

7. Check out the Autism Speaks website and take a look at their tool kits. I believe there’s a lot of valuable information there.

8. Make lists of what you need to do and perhaps purchase a separate calendar for appointments, due dates on paperwork, etc. This will hopefully help you feel more organized and less overwhelmed.

9. If you’re ready to talk about your child but you don’t want opinions, tell people you just want them to listen. People mean well, but unless they have an autistic child, they haven’t walked in your shoes. Telling them up front that you just need to vent can help.

10. Take care of yourself. Keep doctor’s appointments you’ve made for yourself, and carve out alone time if at all possible. You will need a break once in a while!

Follow this journey on Autism Mommy-Therapist.

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The Tattoo That Gives Me Hope While Parenting a Child with Special Needs

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I’m a tattooed mom. That’s right. I’m 34 years old and still getting tattooed. Some are just designs I thought were pretty, but most have a special meaning: family, love, life and messages to remind me of important things. The phoenix on my right forearm has the most important meaning of all.

It’s easy to feel like giving up when you’re parenting a child with special needs. After fighting the same battles day after day, week after week, year after year, things start feeling a little hopeless. There are days I wonder why I bother and why I keep fighting— fighting the system, the teachers, the doctors and even fighting myself.

Progress is slow and inconsistent. People say raising a special needs child is like running a marathon. Raising my child is more like a triathlon, in a war zone, with bullets flying overhead, and I’m unarmed and wearing flip flops. Unprepared, unqualified and so, so tired.

Sometimes I wonder if I’m spending all my time, energy and money (and more time and more energy) fighting and educating (and fighting some more) for no reason. Sometimes I wonder if all this work is futile. If my mental health, my daughter’s mental health and our bank account have suffered for nothing. If despite everything, he’ll end up like the 83 percent of adults with Fetal Alcohol Spectrum Disorder who can’t live independently, or the 50 percent who end up in institutions or prison. Is that where we’re headed, no matter what interventions we fight for? Will he still end up in jail, with the hundreds of thousands of other individuals with mental health disorders? I fear once he goes in, he’ll never come out.

It’s easy to get trapped in that cycle. Especially when you’re in one of those “one step forward, two steps back” moments. Especially when that mom is giving you the evil eye in the middle of Walmart when you thought your child could handle a trip he couldn’t. Especially when your hand is cramping from filling out yet another set of intake forms for yet another specialist, in the hopes of finding another avenue to reach your child.

That’s the key word right there: hope.

Hope is a very powerful thing. It keeps us going when therapy and medication fail and the ground shifts beneath our feet, threatening to pull us under. When we fall to our knees, desperate, lonely and afraid, hope gives us the strength to stand up and fight another day.

sS_jO5YS11lUNuDMP0w2lPrEH5Iy74yqSZMeEr_6EKcc6pUYxtb2V1FT3m92u429aKHhEqxLNNTelQPHO3MsuzH1KvclJM0gJFQtQJ01aRC3S6L2FA8mKlu4u6V_Xo6QGymT4vgw9ix_bO1e27VAeqD7r5SEsVWI8egtFDEoGLX45Djy_PK1qRTlWySxEkVSHwOehRbAENxRwyiDO8ekV86CD3oCc5sxz-1 Hope is the light we see flickering in the future, guiding us through the darkness of the present. As a reminder to keep hope, I got a tattoo of a phoenix with the words, “Hope rises like a phoenix from the ashes.” Because our children matter. Their futures matter. They need our hope and they depend on it. No matter how many times they fall, and we fall with them, hope always has the opportunity to be reborn. Like a phoenix from the ashes.

For as long as I have this tattoo on my arm, I’ll have hope for my son.

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The Awesome Reason 3 Grown Men Are Attending a One Direction Concert

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What could be worse than thousands of screaming teenagers and two hours of boy band music  — all after a 250-mile road trip? For John Simon, Tony Cerame and Jason Struttmann, the answer is no progress in multiple sclerosis (MS) research. Simon was diagnosed with the “unpredictable, often disabling disease of the central nervous system” in 2008.

After the diagnosis, Simon’s friends wondered how they could use humor to raise money and awareness for MS. While others fundraise through charity walks and silent auctions, Cerame wanted to do something more creative. Then it dawned on him — how much money would people give if they knew their donation meant the three friends would have to soberly listen to live music they’ve deemed insufferable? So far, the answer is more than $16,000.

Through what they’ve named “Sober4MS,” Simon, Cerame and Struttmann have attended Creed, Insane Clown Posse, the Backstreet Boys and Cher concerts, often dressed up and never with an alcoholic drink in hand. Donations via their CrowdRise campaigns go to the National Multiple Sclerosis Society Gateway Area Chapter.

Their next gig? One Direction on July 28 in Kansas City, Missouri, a 500-mile roundtrip from their home in St. Louis. They’ll be dressed as “fanboys” (mega fans) in full One Direction gear.

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“We don’t judge people on what they listen to, but it’s another ridiculous thing and it’s a little different than the other acts we’ve seen before,” Simon told The Mighty. “It’s something we think can motivate people to donate to get us to suffer through.”

Their goal this year is to raise $10,000. If they reach $2,000 before their trip to see 1D, they’ll also commit to listening to only boy bands for the duration of the ride.

Sober4MS attend a Cher concert

Fundraising aside, Sober4MS has helped Simon connect with other people living with the disease. He’s become close with a woman he calls “Mama Carolo,” who also has MS. She discovered the Sober4MS Instagram, and the two have since supported each other through hard times, despite the fact that they’ve never met.

In addition to all this, Sober4MS has held three fundraising events in St. Louis where everyone does get to have a few beers and listen to good music. The local events feature live music, food from local restaurants and a raffle.

The Sober4MS guys are thrilled with their success, but one disappointment sticks out. Nickelback cancelled their North American tour.

“I can’t believe I’m saying I’m crushed that Nickelback cancelled their tour,” Cerame told The Mighty. “I never thought in 1,000 years I’d say that.”

If you’d like to make a suggestion for their road trip boy band playlist, or if you want to donate to Sober4MS, click here.

Update — Fri. August 8: They made it through the One Direction Concert sober. Watch their hilarious experience below.

Thanks again to everyone that contributed this year. Enjoy!

Posted by Sober4MS on Thursday, August 6, 2015

Related: Why 3 Friends Are Attending the Worst Concerts They Can Think Of — Completely Sober

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How We Protect Our Son With Down Syndrome From Sexual Abuse

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I was sexually abused as a young child. The trauma is a double wound — one for the actual assaults and another for growing up in an environment where I felt safer living with abuse than voicing my terror to others. As a mother to a 7-year-old boy, one of my driving motivations is to prevent victimhood from becoming a family tradition.

Before Bobby was born, I did my research about the most effective ways to keep him protected. My partner and I agreed to be vigilant about his inner circle. We knew predators look for children on the fringes of a social circle, the little ones who have no one to tell their secrets to. We were determined to nurture a strong, self-confident voice in our child, a voice that would make him an unappealing victim.

Then Bobby was born with Down syndrome. None of the advice on keeping a child safe accounts for a largely nonverbal child who relies on adult help for things like going to the bathroom. How do you differentiate between a “good touch” and “bad touch” for a child who needs help wiping himself?

When he’s older, we’ll have options for empowering him to choose healthy physical interactions. But for now, his safety is primarily up to us. His circumstance may increase the likelihood of abuse, yet we don’t want that fact to limit his ability to experience the world. So we have developed our own philosophy of vigilance.

1. Having a voice doesn’t require language.

We give Bobby a good deal of control over who touches his body. For instance, physical affection is completely voluntary.

However, we can’t allow him to dictate whether he will cooperate with medical interventions. He has had several major surgeries and sees multiple specialists. He hates it all. Last time he had to have his blood drawn, his top-of-his-lungs protest started in the waiting room. The phlebotomist’s face turned dark when she saw us. She was afraid she would have to fight to get the needle in, but she was surprised once we were in the lab. He continued his screaming but still held out his arm and let her take the sample.

As we left I smiled and told her, “Our family rule is that we cooperate with the doctor, but we don’t pretend we like it.”

I know some of the doctors and nurses we see would much prefer I hush him when he starts to scream. In the immediate term, I think his reaction allows him to release the stress of the situation. In the long term, it reinforces an important lesson: Scream as loud as you can if you don’t want someone touching your body.

2. Be that parent.

When he was younger, Bobby came home one afternoon with a bruise. He wasn’t seriously hurt, and my initial reaction was to let it go. My partner’s reaction was to call his teacher on her cellphone and demand an explanation.

I was embarrassed at first, not wanting a teacher I respected to feel accused. But then I remembered that my own sexual abuse had gone on for years precisely because the adults around me didn’t want to make waves.

So I follow my partner’s lead. We don’t spew accusations, but we demand explanations. We aren’t afraid to be a pain in the butt. The school staff knows it. More importantly, any would-be predator lurking in the school knows that, at the slightest provocation, we will show up and start asking questions.

This reputation is one that’s easily earned. We don’t need to intervene every day or even every month. But when we do ask questions, it’s with enough force to leave an impression.

3. Trust your instincts.

My partner is a former child abuse investigator. She can spot an abuser and a dangerous situation. I’m a victim of child abuse. I know the soulless eyes of a predator. My son is a child whose instincts have not been polluted by social niceties. We can’t identify everyone, but if my partner or I have a bad feeling or Bobby reacts negatively to an adult, we honor that.

Innocent until proven guilty is only a stance for a court of law. If someone makes you feel squeamish, don’t talk yourself out of it.

4. Do your research.

Every person who has been alone with Bobby has been through a background check. It’s not a foolproof check, but it’s an easy process that eliminates obvious predators and sends a message to everyone else that we’re paying attention.

5. Remember where your loyalty lies.

I know some of the teachers and administrators we’ve dealt with over the years dislike our involvement. Bobby’s behavior at the doctor’s office isn’t universally understood or appreciated.

All in all, we’d be more popular if we stopped asking questions or if he sat in silence and submitted to medical procedures. But then, Bobby might become one of the children on the fringes.

There are tons of social mores designed to keep parents from asking too many questions. Even other parents collude when they make snotty remarks about someone being that parent or are afraid to smudge an adult’s reputation by asking questions.

My job is to keep my son safe. If that requires uncomfortable questions, then so be it. I don’t fling casual accusations at people. I’m not running to intervene in his life every second, but I’m always paying attention.

I don’t love this work. It’s all the harder because I know that even our best efforts can’t protect him completely. But I much prefer this approach to waiting helplessly, hoping that nothing bad will happen. Down syndrome or not, we are in the fight.

A version of this post originally appeared on Role Reboot.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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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This Mom Is Creating a Mega Play Place Where Kids With Autism Won’t Be Judged

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One mom is taking an important step toward filling an ongoing need in the autism community.

When Shell Jones’s son was diagnosed with autism at age 2, his mom quickly began looking for a judgment-free community where she and her family could feel bolstered and accepted, Shell Jones told Fox News. After searching high and low, Jones realized that for her and many others, no such place existed. She set out to develop the community herself.

Jones is now the driving force behind Play-Place for Autistic Children, a play area and community center currently in the works in her hometown of Sterling Heights, Michigan. There, children with autism and their families will be able to play together free of the judgment and stares they might receive elsewhere.

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Photo via the Play-Place for Autistic Children Facebook page

The play place includes a playground, but it will be much more than that — the 25,000-square foot facility will also include a computer cafe, an art studio, calming rooms, after-school programs for children with autism and their siblings and resource management forums for parents, according to the project’s website. The venue even plans to include a haircut parlor and a sensory sensitivity-friendly movie theater.

Autism Play Place
Painted mural inside the play-place via the Play-Place for Autistic Children Facebook page
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The beginning stages of the computer cafe via the Play-Place for Autistic Children Facebook page

Every amenity in this one-of-a-kind venue is designed to interweave fun with therapeutic techniques to help children with autism develop important life skills in a nurturing environment.

[My] biggest dream for my son is for him to become a productive citizen of our community,” Jones says in the play-place campaign video below. “For him to be able to effectively communicate with others – his wants, his needs, his dislikes, his desires.”

Jones told Fox News she hopes to open the facility to the public by the end of 2015, but before that can happen, she and the Sterling Heights community have a bit more fundraising to do. To learn more about this project and find out how you can contribute, visit the Play-Place for Autistic Children website and Facebook page.

Learn more about Jones’s story and her vision for this play-place in the video below.

Learn more about the play-place and the opportunities it offers:

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When a Stranger Shared Her Experience as a Special Needs Sibling

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I received a private message a few months ago from a complete stranger. Her message was warm, kind, and sincere. She has a sister with special needs and my family’s experiences have touched her, so she felt compelled to reach out. I can’t tell you how wonderful it was to gain some insight from a sibling. A few things she wrote resonated with me, and I think about her words daily.

“Amazing children are on the sidelines.”

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We do know this. It wasn’t just our life that changed when we received their little brother’s diagnosis; theirs did, too. The other day I realized just how amazing our (almost) 5-year-old is when I realized how he sees his brother. We were visiting a child with severe strabismus (crossed eyes), and when we left he expressed deep concern regarding this. I explained to him that sometimes people’s brains have a hard time telling their eyes what to do and that his brother has this same problem. He looked at me as if I was speaking Russian and adamantly stated “He does not!” He doesn’t see congenital disorder of glycosylation with global developmental delay, failure to thrive, sensory processing disorder, hypotonia and strabismus. He just sees him.

We have to leave places early or change plans last minute depending on their little brother’s mood and needs. I can’t imagine how they feel when their brother is the one who is running the show time and time again. But I’ve never heard them lay the blame on him, and in fact, sitting in their car seats after a meltdown at Target, I hear “I’ll sing to you to make you feel better.”  So, yes, I do know amazing children are on the sidelines, and I promise to never forget this.

“I wouldn’t give up my experience.”

I pray this is true. I always have a small fear in the back of my mind that we’ll be resented for extended hospital stays, constant appointments and the tremendous amount of care that takes time away from them. I pray they grow up with empathetic hearts and advocate for the underdogs. I hope they’ve learned to persevere even when odds are against them. I want them to know it’s up to them to choose how they will react when life hands them something unplanned. I hope they choose to walk with their heads held high and never give up. I pray their little brother has taught them to always find joy even on the darkest day. I pray after watching their brother’s determination, they never take their abilities and experiences for granted. I hope when they reflect on their life without a “typical” brother, they see a life with a phenomenal brother.

“I just wish someone would have told me it was OK to need attention, because I felt bad for wanting it.”

I can’t tell you how happy I am that she wrote those words to me. I’m so grateful I have the chance to tell our kids they deserve our attention and we will always be here for them. Yes, their brother requires so much, but they do, too. They need love and attention just as much as he does. I want them to know they should never feel guilty for wanting time with us, even if it’s just a 20-minute walk around the block to collect things for our “idea box” or a drive to Dairy Queen. The last thing I want is for them to grow up and think they were slighted or deserved less. I’m forever indebted for this reminder.

I’m not just a special needs mother; I’m also a mother to smart, silly, amazing, typical boys. All of our boys are unique. All of our boys are special, and all of them are loved beyond measure.

I’m grateful I opened my message from a stranger.

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Follow this journey on The Special Mom.

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 “Share Your Story” page for more about our submission guidelines.

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