Why I’m Nervous About the First Day of School for My Sons With Autism

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The first day of school for my sons, Justin and Tyler, is getting closer.

This is going to be the first time in more than six years that I’ve only had one kid to take care of for most of the day (their baby brother).

The first time I’m going to have a little free time in I don’t know how long.

I’m not going to be a complete ball of nerves most of the day, trying to take care and manage three very different personalities who all want my attention and never in the same way.

To say I’m excited is an understatement.

But that also means for seven-plus hours a day, my older kids won’t have their translator by their side. They won’t have me.

They won’t have the one person who understands them like no one else. Who knows exactly what they want — well, at least 80 percent of the time, but the rest is guessing and I’ve gotten good at it — and can understand their communication through gestures.

Because my kids have autism and are nonverbal, their receptive and expressive language is practically nonexistent.

They have a language all of their own that has taken years for me to understand, while I’m trying to teach them mine.

So to say I’m apprehensive about sending my kids to public school is also an understatement.

When they get upset, I have to trust that someone has the patience to treat them with kindness and not just get angry with them.

When they’re trying to communicate a want or need and no one understands, it can be frustrating for them so they might get upset. They’re not being bad, they’re just frustrated.

Jenna Nelson the mighty.2-001

I have to trust that teachers and kids are going to be nice and not get upset with them in any way because they can’t come home and tell me, “Mommy, a kid pushed me down, but no one saw it. They just saw me push him back, and I was the one who got in trouble.”

They can’t tell their side of the story.

I’m not there to remind those taking care of them that Justin will wander away and Tyler will bolt if he feels anxious or finds something he needs to see. Sometimes even me yelling for him to come back doesn’t work.

To remind them they don’t understand how to play with other little kids, but that doesn’t mean they don’t want to.

Or that Ty’s very sensitive and can get upset easily, and getting upset with him because he’s stressing out will only make it worse.

I’m very excited to finally have even half a day that’s less chaotic. I’m sure my migraines will be getting better with less noise.

But that doesn’t mean I’m not scared and worried about my nonverbal kids who can’t speak up for themselves.

Talking to the teacher and “about me” letters for my sons can only go so far and only do so much.

People don’t understand just how much trust I’m putting in someone else’s hands.

Teachers, I’m trusting you with pieces of my heart.

Follow this journey on My Crazy Little People.

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To the Autistic Person Who Feels Like a Burden for Existing

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To the person who found my blog by searching Google for “feel like i’m a burden aspergers”:

You are not a burden.

You are a human being, and your life can be rich, full, complete, fulfilling and meaningful on that basis alone.

You have the same natural right to life and equality and access and opportunity as anyone else does, and anyone who claims that you are a burden is insecure and ableist.

You are beautiful beyond vision, talented beyond measure, intelligent beyond comprehension and bursting with the amazing capacity to live well and meaningfully and to share your unique perspective and way of existing in the world with everyone you encounter.

You are not broken or defective or lesser. Don’t believe anyone who tells you so, whether explicitly or implicitly, because anyone who says that you are less than because your neurology is divergent from a constructed norm is lying to you.

Your neurology is divergent from the accepted “norm” of human neurologies, but that’s not a bad thing. You are OK the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won’t face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another’s life a little bit better, another’s worries a little bit less daunting and frightening.

You don’t owe society anything else.

And you are not a burden to society if you need any form of accommodation to navigate this world. The society in which we live was not constructed around the needs and experiences of people like you and me. In fact, it ought to be the basic, minimum standard of human decency to ensure that you and I have equal access as everyone else. And sometimes that means making accommodations for us.

If a person in a wheelchair wants to enter a building, there should be a ramp long before he ever gets there. And if a blind person wants to read a book, there should be an audio version long before she ever searches for it. Because that’s making the world accessible for everyone instead of keeping the world accessible only for a few.

If I need written, visual instructions with clear deadlines to do my job, there should be no argument about it. That’s not me creating a burden. That’s me demanding my equal right to full participation. There’s no one correct way to do things or experience life. To exist differently in the world does not make you a burden on society.

I believe society’s burden is to compensate, however slowly, for its long train of abuses, disenfranchisement, marginalization, discrimination, dehumanization and paternalism perpetrated and perpetuated against those who have been denied power, equal rights, and self-determination. That is the burden that society bears.

Emily Titon, Lydia Brown, Shain Neumeier, Alyssa Hillary, Kassiane Sibley and Savannah Logsdon-Breakstone mutually stimming during a November 14, 2012 Autistic Self Advocacy Network annual gala at the National Press Club in Washington D.C.

Follow this journey on Autistic Hoya.

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Why I Told a Nurse I Wouldn’t Change a Thing About My Cerebral Palsy

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It’s been a great year. After a seven-year journey, I finally landed a job. And not just any job, I hit the jackpot of jobs! I work for a nonprofit organization that serves individuals with Down syndrome. I can’t begin to express how incredibly rewarding my job is. I love it! I’ve realized over the past year that I went through all the other job interviews and rejections because I was supposed to end up where I’m at. It’s without a doubt my purpose, and I’m grateful for each day I’m at the office.

Something happened today that got me thinking about the past year. Well, a lot of years, actually. I was getting an annual review done by a nurse for a Medicaid waiver program that I’m on called Community Living and Support Services (CLASS). She checks in on me once a year to see how things are going and if my disability has changed. For those of you who don’t know, I have cerebral palsy.

I told her that it would be a pretty dull meeting due to the fact cerebral palsy doesn’t change much. I laughed as I said it and threw in an “it is what it is.” I’m very comfortable with my disability; it has its challenges, but who doesn’t have challenges, right? She said, “Well, with science these days, you never know, it might be a non-issue one day!” Comments like this don’t offend me in any way, shape or form. I hear it frequently.

This led to a discussion about research — which I do support — and I agreed that one day her “non-issue” comment could certainly be a possibility. Then I thought for a minute and said, “You know, I wouldn’t change a thing.” It surprised her, maybe because she could tell that I genuinely meant it. This isn’t the first time I’ve had this conversation with someone (and I’m sure it won’t be the last). I just find it interesting that people are surprised by my response.

From their viewpoint, my life would be much easier if I weren’t disabled. I don’t necessarily agree with that, though. No one is given a life without challenges, otherwise things would pretty uneventful. The fact of the matter is I’ve adapted quite well to challenges I face, as I hope most people would be able. Cerebral palsy is just a part of who I am. It’s by no means who I am. The truth is, I’m a young woman trying to figure it all out, just like most other people my age.

I don’t know, maybe the moral of the story is life is what you make of it, and I must say I’m splendidly happy with this life.

Elizabeth Hammond the mighty.3-001

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Gap’s Latest Fashion Show Featured Models With Down Syndrome for the First Time

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On August 22, Gap held a fashion show to promote Ellen Degeneres’s new clothing line for kids, Gap Kids x ED.The show was significant for another reason: for the first time ever, one of Gap’s campaigns featured models who have Down syndrome and other differences not commonly featured in advertisements.

One of the young models featured was 9-year-old Kayla Kosmalski, a pageant queen who goes by “Princess Kayla.” Kayla was one of three models with Down syndrome to walk in the show on Saturday.

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Photo from the Princess Kayla Instagram page

Kayla landed the position with Gap through Changing the Face of Beauty, a movement that encourages brands to feature people with disabilities in advertising and media. Changing the Face of Beauty put 14 girls of all abilities in touch with Gap, including three who have Down syndrome.

Hopefully, Gap’s latest fashion show is the first of many experiences like it for models like Kayla.

I loved it,” Kayla told Mashable about her experience at the show. “My favorite part was dancing, waving, giving high fives, blowing kisses and making new friends.”

Take a look at more of Kayla’s beautiful photos from the event below.

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Photo from the Princess Kayla Instagram page
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Photo from the Princess Kayla Instagram page
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Photo from the Princess Kayla Instagram page
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Photo from the Princess Kayla Instagram page 
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Photo from the Princess Kayla Instagram page

Related: For the First Time, Gap Will Feature Models With Down Syndrome in Campaign

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When a Nurse’s Quick Thinking Helped My Son as He Melted Down

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When I found out my son’s tonsils needed to be removed because they were blocking his airway, I was filled with dread. Everyone kept telling me it was a simple procedure, and there was nothing to worry about. That may be true for most children but not my son. He’s 2 years old and has autism and a moderate language delay. I knew the whole ordeal was going to be anything but simple.

Things went fairly smoothly until he came out of surgery. I had made a special request to be allowed into the recovery room before he came out of the anesthetic, but my request was denied. He awoke to a team of doctors and nurses hovering over him. Unfamiliar faces in an unfamiliar environment. To say he was terrified was an understatement.

I arrived in recovery to find him kicking and punching the nurses. He was pulling their hair and screaming louder than I had ever heard him scream before. The louder he got, the more staff rushed over to assist, which, of course, only aggravated the situation. They didn’t want me to go near him. They wanted to isolate him since they believed he was a danger to the staff and even to me. I was stunned and at a loss for words. My beautiful little boy wasn’t dangerous! He just needed a little bit of understanding.

I was close to tears when the most amazing nurse came along. She quickly assessed the situation and ushered everyone out of the room. She asked me what my son’s favorite song was and began singing it to him as she handed him to me. Gradually, he calmed down and fell asleep, exhausted.

Her kindness and compassion didn’t stop there. She arranged a private room for us in the ward, so he would feel more comfortable in such a strange environment. She contacted the head nurse and demanded my son’s special needs be considered for the duration of our stay. IV medications were ordered since my son refuses to take medication orally. A note was put on his chart that nurses were only to enter our room if absolutely necessary. And she even offered to do a double shift to give him some consistency.

I’d like to be able to say all the nurses we encountered after her were just as understanding, but unfortunately that wasn’t the case. However, the kindness of that one nurse gave me the strength to help my son during his days in hospital and the courage to be his advocate.

I wish I knew the nurse’s name. She was an angel who appeared at just the right moment. Perhaps one day she will read this article. I hope she does, because on behalf of myself and my son, I would like to say a giant thank you. Any child who ends up in your care while at the hospital is truly blessed.

Alexis Nooyen the mighty.2-001

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Woman Records Her Dog Caring for Her During a Seizure

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Sometimes, a dog is so much more than a pet.

In the video below, a seizure assistance dog named Poppy appears to look over her owner Shannon, who begins to have a seizure. According to the 4-minute clip’s YouTube description, Poppy had alerted Shannon she would have a seizure 15 minutes before it began. This gave Shannon time to get to a safe place, where she then set up a camera to record. When Shannon begins to seize, Poppy licks her face. According to the video’s description, this action helps Shannon “come around quicker” as well as get rid of “excess saliva to help prevent choking.”

Seizure assistance dogs can be trained to respond to their owners’ needs in different ways. Some dogs seem to be able to sense oncoming seizures and then alert their owners to prepare, according to Canine Partners for Life, a service dog organization. Some dogs are trained to bark to alert people nearby when their owner is already seizing, while others are trained to activate alarm systems, according to the Epilepsy Foundation. Dogs can also be trained to lie down next to their owners to help prevent injury.

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