My Daughter Has Autism, My Son Doesn't. Both Are Good News for My Family.

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I spent over a year fighting the voices in my head that told me my daughter, Julianna, had autism. I was okay with other diagnoses, like developmental delays, speech delays, even sensory processing disorder. The school district, who had been doing the bulk of the evaluations, went along with me, because I think they sensed my trepidation concerning the word autism. Back then, it felt so final, so limiting. So I felt better believing that she could have other things, but not autism.

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When she approached her 5th birthday, I became concerned. Her behaviors were getting out of control. I was losing my ability to care for her properly. Our family seemed like it was hanging by a thread. And the local regional center denied services because she didn’t have an official diagnosis of autism on her records, only “autistic tendencies.” So when she started her second year of preschool, I told the psychologist to give it to me straight. If he thought she had autism, I was ready to hear it. And more than that, I desperately needed more help for her.

I remember sitting at the table in the conference room of the preschool, surrounded by her wonderful teachers, the school director, the therapists and the psychologist. I already knew why we were meeting: We were finally going to put that word “autism” on her IEP, on her official reports. It would be her primary diagnosis. But I didn’t realize how much it would hurt me, even being ready for it. The psychologist began reading his report, and when he mentioned autism as her new diagnosis, it stung me. It felt like I had just been pushed hard, in the chest, like the breath had been knocked out of me. I fought to hold back the tears, but it was pointless. I sat there, the parent, the representative of Julianna at this meeting, and just cried.

I’ve cried at so many IEP meetings, and I’ve always wondered how it makes the others at the table feel. Are they uncomfortable? Is it awkward? Do they really understand why this is so hard to hear? To sit around a table and hear all these things said about your child — global delays, first percentile, mild mental retardation, gross motor delay, fine motor delay, speech delay, the list goes on. And now autism. But that word was key to getting her the help she needed and the peace our family was seeking.

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I’ve come a long way since then. That was seven years ago, and just this week, I began the same process with my youngest child, Nathan, who is almost 3. He was born with a cleft palate and a duplication of chromosome 22, which puts him at risk for all kinds of delays and disorders. He’s been watched closely by a team of specialists since his birth. He’s had the surgery to repair the palate. He’s doing speech therapy and progressing well. But because of our family history, I had to know — was autism going to be added to his list?

He was evaluated by our regional center, the same one that denied services for Julianna year after year. I sat in the waiting room with other parents seeking answers while Nathan played with the Tonka trucks. A nice woman called his name from the doorway, and we walked back to her office. After a series of questions and tests, she said he did not have autism. I was expecting this and didn’t feel relieved. All I could think about was my daughter.

When I got home, I posted the news about Nathan on my Facebook page, and many people liked the post and commented things like, “What good news!” And they’re right, it is good news. Good news for Nathan. Good news for our family.

But I couldn’t stop thinking about Julianna. She has autism. She’s still dealing with anxiety, motor and vocal tics that she can’t control, sensory issues related to food and clothing and smells and sounds, problems communicating and making eye contact, a strict schedule of therapy, a fear of swimming and water. And that’s OK. She’s also good news to our family. And if you asked her, she’d say there was nothing wrong with her. Sometimes I ask her, “Do you like being Julianna?” She always answers with a little laugh, “Yes, I like being Julianna.”

Yes, I am happy Nathan doesn’t have autism. But even if he had been given the diagnosis, I would have felt the sting, the loss of breath, just like I did seven years ago. Hearing the word is hard — but the healing does come, slowly. I still ache for Julianna and her challenges, but she is also good news in our family. She is teaching us, and others all around her, about kindness, tolerance, acceptance and love. And we are blessed. I don’t fear autism anymore. I am embracing it. It’s not final or limiting to me anymore.

It makes her who she is, and our family is better because of it.

Follow this journey on The Special Reds.

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Still from Sesame's Streets Autism Video

Sesame Street Creates Online Videos and New Character With Autism

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“Sesame Street” and autism awareness is a perfect combination.

This week the celebrated children’s show introduced the world to Julia, a character with autism. Julia is part of an initiative called “Sesame Street and Autism: See Amazing in All Children.” The online program will provide resources for viewers on the spectrum, as well as educate the general public about autism.

Also available on the Sesame Street and Autism website are some fantastic videos telling the stories of people with autism. In them, the “Sesame Street” character Abby spends some time getting to know parents, siblings, friends, teachers and kids affected by autism.

We’ve compiled some of our favorites of these videos below for your viewing pleasure. Enjoy!

Thomas’s Story: 

A Sibling Story: 

Nasaiah’s Day: 

 Family Friends: 

Which stories are your favorite? Let us know in the comments below!

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10 Things You Can’t See in This Picture of My Son With Autism

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We have all heard it said that pictures can be deceiving. I’ve thought a lot about this lately. We aimlessly browse through our Facebook newsfeed and see picture after picture of happy moments. I think it would be interesting to see the real picture. Perhaps we would all like each other a little more if we didn’t have the facade of permanent happiness on social media. 

Occasionally, I see a picture of a non-typical family. Their faces are full of smiles, except for the unruly toddler who appears to be possessed by demons. These pictures always make me chuckle. I like the realness of it.

As a parent, I find it quite difficult to capture pictures of my son, Drake, period. My child doesn’t love the camera. Add autism into the mix, and I feel like I need a fancy DSLR camera that takes action pictures.

Some of the greatest pictures I have of Drake were taken by his therapists. However, as stated previously, pictures can be deceiving. I will never post a picture of Drake that would embarrass him one day, but I think there are times others need to know the story behind the picture. In order to educate others and spread awareness, it’s imperative all aspects of autism be explained.

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The picture on the right shows what appears to be a happy little guy holding his “First Day of Preschool” sign. But here are 10 things you can’t see.

1. You can’t see his amazing ABA therapist, Lindsay, working hard to get this picture for me. You see, as an autism parent, I don’t have the luxury of just snapping a picture of Drake looking cute in front of the school building with a huge grin on his face. I had to ask Drake’s therapists to get a picture for me.

2. What you don’t see is the major meltdown that occurred when Drake was asked to hold the sign. You don’t see his therapists trying with all their might to make this kid smile.

3. You don’t see the iPad they eventually had to use (playing the “Kung Fu Panda” trailer) in order to get one brief smile.

4. There is no way for you to see the picture schedule being shown to Drake to prepare him for his big day.

5. You can’t see how anxious I am about this new school year. Just one year ago, I withdrew Drake from a different preschool because he would throw up when we pulled in the parking lot from sheer anxiety.

6. You can’t see how much progress he has made in ABA therapy. It may not work for every child, but it works for mine. He is happy. He loves his therapists, and they love him.

7. In this picture, you can’t see how thankful I am for his therapists. I have no idea where my little guy (or myself) would be without these amazing and selfless individuals.

8. You have no way of knowing he only attended preschool for 30 minutes the first few days to make sure it was a positive experience.

9. You don’t know about the meeting I had with his therapy team about preschool, or that I almost backed out.

10. Nothing about this picture tells you how proud I am that he rocked his first day and every day since then.

You see, pictures are only that — pictures. There is always a story behind them. Our story can be complicated, worrisome and tiring, but it’s ours. Despite all of the challenging stuff that can’t be seen in a picture, I am thankful.

Follow this journey on Walking With Drake.

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Sesame Street Debuts Character With Autism

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“Sesame Street” has always been the most inclusive place in town.

On Wednesday, the company launched “Sesame Street and Autism: See Amazing in All Children,” an online initiative that will provide resources for viewers on the spectrum, as well as educate the general public about autism. A big part of this is the introduction of Julia, an autistic character who Elmo meets in an online storybook, “We’re Amazing, 1,2,3.

Julia, an autistic character on Sesame Street

 

In the last year, Sesame has held focus groups with special needs educators, parents of children with autism and parents of “typical” kids,” according to “Autism Daddy,” a popular parenting blogger who’s worked at Sesame since 1994 (and recently went public with his real identity.) From these sessions came the three goals of Sesame’s autism initiative.

The first is offering daily routine cards featuring Sesame characters performing everyday tasks like brushing their teeth, going to a restaurant, crossing the street and trying new foods.

Sesame Street's daily routine cards featuring Sesame Street characters

Step two is where we meet Julia, who goes on a playdate with Elmo and Abby and teaches them about autism. The storybook will hopefully act as a tool for children unfamiliar with autism but who may have a neighbor, classmate or friend on the spectrum. In one scene, Abby assumes Julia doesn’t like her because she doesn’t answer her right away.

“Elmo’s daddy told Elmo that Julia has autism,” Elmo explains. “So she does things a little differently.”

Other resources include an animated story from Exceptional Minds, a nonprofit school and working studio for young adults on the autism spectrum; and more videos for kids on the spectrum, their siblings and parents.

The third part of Sesame’s initiative focuses on parents — of kids on the spectrum and of neurotypical kids. Five videos featuring autism parents are now available, and all aimed at adults. Take a look at one below:

For more information Sesame’s autism initiative head here.

Update — Wednesday, Oct.21 3:48 p.m. — Sesame Street sent the following statement to The Mighty, from Dr. Jeanette Betancourt, SVP of US Social Impact, Sesame Workshop:

We created Julia as an illustrated character so kids can see the similarities that all kids share through our narrated storybook experience. Julia was designed for these digital platforms based on the advice that iPads or touch technology are among the most popularly used resources within the autism community. There are no plans currently for Julia to appear on the broadcast version of Sesame Street, however we believe that by working in collaboration with our vast coalition of partners will have greater reach and impact to more precisely reach young children with autism and their families.

We want everyone to know that children with ASD want to play and be included; they want love, friendship, understanding, and support just like any child does.  We also want people to know that there are a wide range of autism behaviors and experiences because we know that if you have seen one child with autism, you have only seen one child with autism.

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Part 2! Kids With Autism Turn 'Obsessions' Into Creative Costumes

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Last week we asked our Mighty readers who have autism, or who have a loved one with autism, to share how they’ve turned seemingly quirky “obsessions” into home-run Halloween costumes. Since then, we’ve been overloaded with wildly creative getups. If you haven’t already, check out our first compilation of these awesome costumes here.

Below, you’ll meet 13 more kids with autism who know how to rock being unique.

1. A creeper from “Minecraft”

via Jen

2. A car wash

via Andrea Brillhart

3. A vacuum

via Eric

 4. My Little Pony

via Shari DeCarlo

5. Dr. Octopus from “Spider-Man”

via Lena Kotler-Wallace

6. New Mexico

“I asked if he had a backup choice… without a pause he said, ‘Sure, Wyoming.’ via Sara Starr

7. A butterfly

via Erica J. Thiel

8. Frankie from “Foster’s Home for Imaginary Friends”

via Emma Wozny

9. The TARDIS from “Dr. Who”

via Melodie Vantkruis

10. A (hungry) shark 

via Michelle Skinner

11. A volcano (bonus if your sisters are hula dancers!)

via Nancy Cook

12. Steve Jobs + an iPad

via Denise Mitomi

13. A construction barrel 

via Jen Lovy

Do you or a loved one with autism have a unique Halloween costume you want to show us? Send photos to [email protected] Happy Halloween!

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The 3-Step Strategy I Use When My Child Has a Meltdown

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It is loud, frustrating, completely out of control, exhausting and sometimes even scary. A meltdown that sweeps the child as well as everyone and everything in its path is common in children with autism. It is dreaded by many parents as well as the children.

In the early days following my son Ethan’s diagnosis with autism, such meltdowns were a common occurrence. One of the most memorable happened at the largest indoor shopping mall this side of town. It was on a Saturday, in winter, when it seems like the whole world converges at that mall. We were only going to one shop to buy a helmet and then straight back home, just the two of us. We never made it into the shop; he had a meltdown near the door.

I was too absorbed in keeping Ethan safe and out of the way to notice the throngs of shoppers passing by. I did notice, however, the polished, black boots of the mall’s security guards. They were particularly close to our faces seeing as we were on the floor, close and very shiny. I looked at them for a moment, wondering who had summoned them; a concerned or an annoyed shopper?

Meltdowns take a toll on caregivers who often struggle with how to handle them. In the beginning, Ethan’s meltdowns would leave me feeling exhausted and defeated. Since his meltdowns were quite common, I was pretty much always exhausted and defeated. It was only when I developed a strategy for dealing with them that I was able to sail through even his most spectacular meltdowns. This three-part approach transformed both of our lives, and I continue to rely on it:

1. Don’t take it personally.

It’s easy to take a meltdown personally when you’re the one on the receiving end of the glass-shattering screams, punches, kicks and bites. On top of that, you’re also the one tasked with minimizing damage to property, keeping yourself and everyone else safe — including the epicenter of the meltdown, your child. Above all, it is you who is tasked with helping your child regain composure, because when a child with autism is in the middle of a meltdown, they may be unable to regain control on their own.

Yes, you may be the one bearing the brunt of your child’s meltdown, but it really isn’t personal. You just happen to be the closest target; it could have been anyone or anything. Remember that at a certain point the child lost all control and desperately needs to regain control over the enormous force that has taken control of them. They are probably even more terrified than the little kids who are peeping from behind their parents’ tightly clutched legs.

The meltdown is in no way directed at you.

2. Distance yourself from the meltdown.

Allow your mind to take you away from the meltdown to a place of rest, quiet and peace. This can be a real or imaginary place. My escape was always a beach in Tofino, British Columbia, that I had visited during my pregnancy. When you allow your mind to go to that beautiful, peaceful place, you avoid being emotionally and psychologically sucked into the vortex of the meltdown. From that safe distance, you view the meltdown happening near you with detachment, as you would if the child involved was someone else’s. You remain neutral and able to focus on containing the meltdown while remaining relatively unaffected by it. In addition when you detach yourself from the meltdown, your emotions don’t feed into it, and it dies down much faster.

This ability to mentally distance myself has not only helped me deal with meltdowns but also with other difficult situations. Parents of children with special needs are all too familiar with insensitive, judgmental remarks from family, friends and even complete strangers. Often such remarks are uttered while they are already dealing with a meltdown! By distancing myself from thoughtless comments, I am able to hear them but not allow them to affect me. It’s like having my own protective shield.

3. Know it will come to an end.

All meltdowns eventually end when their energy runs out. They are utterly exhausting for the child. Simply knowing that a meltdown has to end keeps you steady and allows you to quickly regain the control that your child has lost.

This summer, my three-step approach to handling meltdowns proved invaluable under extremely stressful conditions. As soon as we boarded the plane for one of our 11-hour flights, my sleep-deprived son had a meltdown. It was our first trip overseas, and the brief rest at the hotel had not been adequate. Even with the judgmental, snide remarks of some of our fellow passengers in the background, I was able to calm him down before we took off and avoided the very real possibility of being asked to disembark. I was thankful for this tried and tested method that had seen me through countless meltdowns before.

Lead photo source: Thinkstock Images

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