Why Parenting Blogs About Autism and Grief Don’t Sit Well With Me

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I am autistic, and I have autistic children — and yes, I get it.

I get that sometimes it can be hard.

I understand that it’s frustrating as a parent not to understand what your child wants, and it can hurt to see your child left out of things by their neurotypical peers.

I used to feel like that. It would sadden me to think that my son couldn’t attend a birthday party without having violent meltdowns and that a simple trip out would prove so problematic.

I’ve noticed on social media recently, there seem to be more and more posts where the parents are lamenting the child they have “lost,” saying autism has taken their joy. That they hate autism and grieve for what their parenthood and their children’s childhood should have been.

They proclaim they are “warrior moms” battling their own children’s autism.

Yet they don’t seem to realize that their children are autistic, that autism isn’t a separate part of their child  it’s not an outside entity that has invaded them.

It’s part of their neurological makeup and affects all that they do, how they react and what they feel.

I can’t say, “Oh I behaved that way because I’m autistic,” or “I’ll just leave my autism to one side for a moment so I can interact more easily.” It doesn’t work that way. I am autistic all the time, happy or sad.

Now I can see how to look at things in a different way: The birthday parties my son couldn’t attend and still cannot would give him sensory overload. Too much noise, crowds of children, bright lights and presents that aren’t for him would have immediately produced a meltdown. No fun for him or the host.

I realized it was myself I was sorry for, not him. For him, it would have meant an overwhelming experience that was unpleasant.

Now we go and see a child a week before the birthday. I discreetly hand over a gift that my son has chosen and he enjoys some time with his friend without lots of other children, singing and overload triggers. There’s nothing wrong with that.

For his own birthday, he has a cake but no candles or singing. It stays cut into slices in the kitchen for him to help himself to. He has his presents wrapped in plain brown paper and he chooses them himself, therefore reducing unexpected surprises and anxiety, as well as no overload with bright colors.

And he’s happy — he’s happy because he’s listened to and he’s comfortable.

The trips out he found hard? Ear defenders for noise sensitivity and a chewy for oral seeking and anxiety. We pick something for him to look for, and if he or my little daughter need to sink to the ground to regulate themselves, I sit right there with them.

I believe these posts and blogs that depict children as missing, lost or to be grieved for do harm. They reinforce the idea that autism is an epidemic, a tragedy and an illness to be recovered from. They show the child as a burden and someone the parent should be pitied for having to raise.

We are not missing, lost, ill, an epidemic or a disease.

Celebrate your autistic children. If they cannot verbalize communication, aid them with signing, picture communication cards, typing or communication apps. There are ways.

Your child is a person in their own right; they have opinions and dreams and should not be written off. Be mindful that what you post on the Internet can and will be found years later. I suggest only posting what you would not mind your child reading about themselves.

Treat them with the respect you would expect to be treated with.

Cherish their neurological difference, and never make them feel “less.”

They are and can be so much more — just believe.

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How I Faced My Panic Attacks Head On

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I used to be one of the many people with dystonia who experience panic attacks, and it felt like torture. One of my former triggers was driving, even around my own town. Forget long distances. I used to panic if I wasn’t the first car at a red light and didn’t have a way to turn off the road. I felt like I was going to have a heart attack or pass out. My heart would pound and my hands would sweat. I was claustrophobic and felt weak, with my legs trembling and my breathing shallow.

After a few years, I had to do something about it. I couldn’t live like that anymore. If I wanted to deal with the anxiety and live a fuller life outside my home, I knew I had to face my fears head on.

For the next couple of weeks, I put myself in situations that created anxiety and panic. While previously I would actually turn off the road and make a U-turn to avoid a red light, I now purposely drove in congested areas of town during afternoon rush hour so I would get caught at red lights and slow moving traffic. 

Within two weeks of exposing myself to heavy traffic and red lights, my panic attacks ended. It was a process, but I managed to overcome them in a shorter period of time than I expected. I overcame something in two weeks I lived with for years! What a relief!

Then, it was time to tackle my fear of bridges. I decided to start with a bridge in my town I had avoided it for years, even as a passenger.

The first few times I drove over the bridge by myself I was dizzy, my hands were sopping wet and my body was trembling. I felt like I was floating on top of my seat and had white knuckles from gripping the steering wheel so hard.

I did my best to focus on the music, but a minute trip over the bridge seemed like 20.

Worrying about the return trip, I missed my turn-around exit. I found myself on a highway travelling at speeds I hadn’t driven in 10 years. My anxiety skyrocketed trying to keep up with other cars. I finally came to the next exit and had to park for a little while to calm down before I got back on the road.

Anxiety crept back in when I got back on the highway and onto the bridge again. When I got across safely I wanted to get home immediately. Instead, I stopped myself, did some slow, rhythmic breathing, turned around and drove back over the bridge again.

I did this every day for the next week.

Each time I was on the bridge and the highway I had anxiety, but it became less and less every day. My confidence grew, which gradually reduced my anxiety. After about a dozen times over a period of a week, I no longer had anxiety driving on this bridge or any other bridge. Nor did I have anxiety being on the highway.

The more significant part of this experience was the boost of confidence. My world opened up, and I began doing other things I had been avoiding. Life seemed exciting and interesting again. Instead of worrying about all the bad things that might happen before I did an activity, I started to look forward to them. A huge burden was lifted. In this way, I felt I could start living again. 

Editor’s note: This story is based on one person’s experiences and shouldn’t be taken as professional advice. To learn more information about overcoming anxiety and panic attacks, visit the Anxiety and Depression Association of America or consult your doctor. 

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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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