When My Daughter With Autism Tells Me, ‘I Wanna Be All Right’

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When my daughter cries out to me, “I wanna be all right,” it stops my world. She wants to be all right? There’s an inner conflict going on inside her head. My child’s brain is paved with unique and atypical neuro-highways. She gets confused about her feelings. She understands her situation should be OK, but somehow it still upsets her. So she cries and wails and says she wants to be all right.

This situation usually happens when she doesn’t get her way. Or her little brother takes her toy. Or she isn’t allowed to eat a snack. Or her mom tries to put on her blue dress. Or those shoes! And what is this pasta thing sitting in front of her?

You may be thinking, “She’s spoiled.” “She’s throwing a tantrum.” “All kids her age throw a fit.” “But you’ve been indulging her,” you think again. “You let her have her way and don’t set boundaries.” Yes, I know this is what you may be concluding when she lies on the ground. In the middle of the store aisle. The cement sidewalk. Even the parking lot has been the setting for our drama. She goes down on her knees like the world is crashing in on her. And the thing is, her world is crashing down on her!

She may understand some social norms, but she does not like all of them. But somehow she’s “supposed” to be OK with them. She’s “supposed” to let it go or go with it. It’s like a war waged inside my child’s brain. And this war I barely understand hurts my mama heart.

“I wanna be all right.” I feel I can’t fix it. I can’t make it better. My heart breaks when she directs the comment toward me, adding “Mama” to her honest and sincere request.

I hope to soothe her. I tell her it’s OK. We can be mad a little bit. Do you want to take a break? Come back and join us. It will be all right. I hope this works. Or on a not so perfect and patient day, I sweep her away and hope to be home in a flash.

She wipes her nose and wipes aways the tears back and tells me, “I’m all right, mudher.”

And I think, a little storm has passed. The sun shines. She’s happy. She’s all right. I want to help her keep that “all right” feeling. But I also want to help her weather through it when it’s not so all right. I want to make sure the sun will still shine on at the end of it. 

I can’t begin to know inner workings of my daughter’s brain. I strive to learn more every day. I want people out there who have little to no idea about autism to be a bit more accepting about families living with autism. You can help make it “all right” by adding your compassion.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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Mom Creates Dolls With Disabilities and Health Conditions So All Kids Feel Included

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A mom from Wyndham Vale, Australia, is taking matters into her own hands when it comes to getting more diverse toys on the market.

Frustrated with the lack of options available to her own children, Maria Kentley, a mother of four, including two children with autism, began repairing old, discarded dolls and turning them into dolls with various disabilities and illnesses, The Age, an Australian newspaper, reported.

Kentley’s repurposed dolls, called Hope Toys, have a variety of disabilities and diseases including Down syndrome, autism and leukemia.

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Photo from the Hope Toys Facebook page.

Each doll comes with a name, a short backstory and any necessary equipment, like a wheelchair or crutches. Then, the doll is packed up and shipped to its future home. Hope Toys dolls can be custom ordered, and Kentley occasionally sells them on eBay with each doll’s proceeds going to a different charity organization.

“With magazines, media, department stores and the Internet constantly bombarding us consumers with numerous images of the ideal look, perfect dolls, perfect body figures, etc., children grow up thinking they will never be good enough in society’s eyes,” Kentley wrote on her website. “Encouraging your child to play with a diverse range of toys and dolls is a great step [toward] helping [them] accept, understand and value their rich and varied world.”

Check out some of the doll she’s created below.

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Matilda with her older sister, Anna. Matilda was recently diagnosed with Non-Hodgkins lymphoma. Photo from the Hope Toys Facebook page.
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Rose and her baby sister, Cherry. Both sisters have vision impairments. Photo from the Hope Toys Facebook page.
Tuscany
Tuscany has Down syndrome and loves playing the guitar. Photo from the Hope Toys Facebook page.
Autism
Photo from the Hope Toys Facebook page.
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Photo from the Hope Toys Facebook page.

To learn more about Hope Toys or place a custom order, head here. To check out more of Kentley’s doll designs, visit the Hope Toys Facebook page.

Related: A Toy Company Is Finally Making Dolls With Disabilities and Health Conditions.

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Dating Someone Else in a Wheelchair Concerned Me. This Changed My Mind.

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I understand all too well the joys of dating as a wheelchair user. How people are interested, but then when they realize that, yes, you do need the chair for all or part of your mobility, they’re no longer interested. I was even told by one man that he “wouldn’t want to take care” of me. Well, who asked you to? I’m extremely independent; even if I need an aide for certain things, very little stops me.

I went on a date on September 24, 2011 with a nice, sweet guy. He was funny, charming, smart and adorable, and he even gave me a rose for our initial meeting at lunch. This was a different situation for me, mostly because Frank was a wheelchair user. I’d never dated anyone who also used a power chair. His chair was the same make, model and color as mine, too! We met through a puppy raiser for Canine Companions for Independence. Frank’s service dog, Bastien, was a black lab/golden cross just like my service dog, Carmel. I always say the dogs hit it off as much as we did.

There are things I learned from dating a man in a chair as opposed to an able-bodied man:

I learned it’s incredible not feeling so alone. When we go out together, we’re a team. When he opens the door for me, it looks like an orchestrated dance! We move around each other and the dogs so well, it’s become almost second nature.

When something went wrong with my chair, he fixed it. My joystick is sensitive and needed extra support. Frank and his brother got the tool box out and repaired it. I thought that was so unique and special. I didn’t need to make an appointment to get the chair fixed. It was done in an hour! He understood being in a chair, so he recognized the importance of my chair working properly.

We get great seats at concerts and ball games!

People tell us how unique our relationship is when they see us out together, how happy they are that we found one another and how we give them hope (in their own relationships).

During the first few months of our dating, I had my concerns. I had uncontrolled seizures at the time, and I’d never had someone else in a chair help me through that scary time. Frank did it beautifully and handled it so well. Since Frank was my first boyfriend in a chair, we were quite the spectacle as we got out of the van. Two service dogs that look similar and the same color chair — people really noticed! I was used to the stares since I was in the chair, but now we were both going through that. We adjusted pretty quickly.

I realized even though Frank couldn’t stand, he could still help me when I needed it. When we go out together, we’re a team. I love the gentleman he is. Even if I could open the door myself, I don’t think he’d let me! I did have to explain to him that this was something new to me, and sometimes I needed a minute to process the feelings of both of us being disabled.  He was sensitive to my feelings and we talked about all of it at length. He helped make my uneasy feelings fade quickly.

Being with Frank is special because of who he is. We share the same Christian values, and we’ve both been through so much, medically. We’ve both had multiple surgeries. Nine months into dating, Frank took me into NYC to a gorgeous restaurant called Del Posto. Once again, he amazed me and showed me something I hadn’t known or experienced before.This five-star establishment’s food, decor and service are things we still talk about three years later. I’d never eaten such extraordinary food. They brought out a chocolate dessert tree, and on a branch was the most beautiful engagement ring!

We will be married two years in October. I sometimes can’t believe how my life has changed from meeting him and all the places we’ve traveled, and how much we laugh and simply understand one another. For years, I didn’t want to date someone else in a chair. I’m so thankful I opened my eyes to see how well we work together and how happy I am that I took a chance and tried dating in a different way.  

It’s amazing what we learn when we keep our minds open.

The Mighty is asking the following: What’s a dating story related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? 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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When the Internet Judged My Son with Down Syndrome’s Outfit

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This is my son, Parker:

parker2

Looks like a happy little boy, right?

Wrong.

I’ve been informed he will be very angry 18-year-old one day when he finds out his childhood secret. When he’s not playing with trucks and getting about in blue cloth diapers, I’m busy ruining his life by dressing him up in bright colors, letting him choose his own outfits in the morning and watching him try hats on at the grocery store.

Typical. The only hat he's ever kept on his head and it's a stunning shade of lilac. Real men wear PINK!#notafloralonesie#pinkcamouflage

Posted by Parker's Place on Monday, 29 June 2015

I posted this photo on my Facebook page. But it wasn’t until I shared the image in a kid’s clothing Facebook group the true extent of my imperfect parenting came to light. 70 plus comments later, numerous women were removed from the post by admin, kicked out of the group and their comments were deleted.

Over a floral onesie.

The common critique in the dissenters? That I dared to dress a boy in an outfit “meant for a girl.” I sat in my bed drinking tea, regaling my family with the latest comments and updates, which were hilarious to say the least. I won’t re-post them, because they were over the top and don’t deserve the air time, but this is how it ended.

admin

Yes. This really happened. I know.

Now, I’m aware I’m not really the coolest mom around. I don’t drop hundreds on limited-run baby outfits sold secondhand for hundreds. I shop online for kid’s clothing, mainly sticking to the same few brands which have accessories I like. (In this case, a zipper so Parker can’t undress himself.) But I keep a range of colors, patterns and textures in his drawers to give him some freedom of choice and a good range to choose from.

I was so genuinely surprised to see this as an issue I headed back to the website I purchased the outfit to check if there was a disclaimer. Maybe: Restricted For Use By Females Only.

Nope. It is simply named “Natives Print.”

So my question: Why the hate? These comments wouldn’t have been acceptable in any forum if they were addressing his physical appearance. So why is it OK to target the clothes a child is wearing?

I know this may seem like I’m making a mountain from a molehill. But believe me, when I read comments criticizing a 2-year-old’s outfit, I felt the need to press the issue, while celebrating floral prints in all their glory.

My son has Down syndrome. I bet the comment writers didn’t notice that because his face was covered by a glorious lavender felt hat. He is going to grow up jumping hurdles of outdated stereotypes. This issue is a mere drop in the bucket of assumptions I already fight every day and try to raise awareness about. I truly don’t care if he grows up and decides he likes pink Ralph Lauren shirts, or pajamas in a startling shade of fuchsia. Or even those floral shirts all the husbands are wearing.

We’re all aware little boys were once traditionally dressed in red and pink, and girls in blue. Now, that switched around is the social “norm.” God forbid you break the rules. Gender stereotyping is real. It limits choices in the most superficial and ridiculous way. I don’t even know how to put it simpler: Dress your kid in whatever the hell you and they want to wear. And then go put them on Facebook. 

Oh and Internet, don’t judgy. It doesn’t go with what you’re wearing.

parker1

A version of this post originally appeared on Parker Myles

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What I Want Others to Know About Avoidant/Restrictive Food Intake Disorder

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“Just eat the food. All I am asking you is to try it,” my father badgers me as I stare at my food. I’d consumed my noodles, and there was a bowl of strawberries dangerously close to my plate.

I raise an eyebrow, an internal dialogue going on in my head. Part of me (the part I call Eddie) is telling me I will only get sick and gag if I try to eat the strawberries. I will only get sick the moment that strawberry touches my tongue. The other part of me is saying, “Just taste it, you won’t gag.”

Every single time I’m faced with trying a new food, this internal dialogue runs through my head. I’m hypersensitive to the taste and texture of foods. It is paired with my eating disorder known as selective eating disorder, also known as avoidant/restrictive food intake disorder. The short version is ARFID. Those who have ARFID can’t just “try new food.” A dialogue, similar to the one I described above, might play through their heads. Imagine going to a restaurant with a five-page menu and finding none of your safe foods. Safe foods are foods people with ARFID feel comfortable with eating because they are familiar with them.

The exact cause of ARFID is unknown. Some believe it is born out of a fear of choking or vomiting. For me, I believe it came from my birth circumstances. Before I was adopted out of Russia at a very young age, the baby food given to me wasn’t good. My parents told me that I was pasty and in general not healthy-looking.

ARFID has only officially been recognized as an eating disorder recently (the DSM-5 addition). It’s not simply “being a really picky eater.” I’m well aware of starving children and am not trying to be “selfish” with my eating choices, so please don’t try to guilt or shame me into eating. I’ll sit there at the dinner table for hours just staring at the food. I’m hungry, but my eating disorder has so much control over me that I simply can’t eat. Picky eaters typically outgrow their picky habits by the time they’re in their twenties. For someone with ARFID, this problem might persist beyond that age range.

From my own experience on social media with groups dedicated to selective eating disorder and ARFID, some people report hypnotherapy works wonders. Some psychologists and psychiatrists also treat this more like an extreme phobia to try to help their patients. It’s possible to get help, but it requires a lot of hard work from the person with ARFID.

I hope people understand that selective eating disorder/ARFID is not just someone being picky. It is a legitimate eating disorder that’s only now getting the attention it deserves from both the media and scientific communities. I also hope someone reading this has a light bulb go off in their head and realizes they, too, are not alone in their eating disorder.

If you or someone you know has an eating disorder and needs help, visit NEDA.org.

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20 Things Parenting a Child With Special Needs Has Taught Me

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Each day provides an opportunity to learn more about my inner self, about relationships and about life. Many of these lessons were learned when my youngest son, who has autism, was very little. His needs during the time could certainly be described as special. I love and respect my son and I want to do whatever I can to support him and help him to thrive. That’s when I slowly began to develop some guiding principles I still try to turn to whenever I find myself in difficult situations.

I may have learned these things, but it doesn’t mean I’ve mastered them. I’m still a work in progress. Here’s my list of things so far that parenting a child with special needs has taught me about life in general:

1. Beauty can be found in unexpected places.

This first one may sound trite, but it’s an essential truth I cling to. Life can present us with struggles, yet it’s in the midst of darkness we truly appreciate the light. During our journey, I’ve learned about strength, love, perseverance and forgiveness. I’ve also met some amazing people along the way.

2. Embrace what makes life unique.

The world is full of opportunities for adventure. It’s also populated by a gloriously diverse people who have a lot to teach us and deserve our respect and acceptance. Different is awesome and can provide a refreshing new perspective on things. In my house we call it “not boring.”

3. Parenting can be hard sometimes.

Special needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean our children are a burden, because we love them. However, full schedules, perpetual problem-solving and things like constant medical concerns can make us weary.

4. Ask for what you need.

The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask so speak up. Sometimes, we require assistance to get through things. It’s not selfish or weak to ask for help.

5. There will be periods in our life where it feels like we take more than we give.

This can be especially hard for caregivers to accept. Remember our worth isn’t defined solely by what we do for others. There will be other times in your life when you’ll be in a position to help someone else who is in need. The scales are never balanced.

6. You’re stronger than you think.

“I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I’m immensely impressed by the strength and resilience displayed by my son after witnessing some of the obstacles he has had to overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it’s important to remember this next one …

7. Self-care is essential.

Exercise. Try and get enough sleep. Eat healthy. Find what helps you relieve stress and then somehow find time to do it. Clear the schedule. Unplug. And for goodness sake, pamper yourself once in a while. You deserve it! You need it!

8. Be honest about your struggles.

Allow yourself to feel even the negative emotions and talk about them. Those feelings are there to guide and teach us, and it can be damaging if you simply push them back down inside. Find people who are safe sounding boards and vent away.

9. Keep moving forward.

Let it out, but then let it go. Try not to get stuck in a negative place because it can warp your view of your situation.

10. Count your blessings.

Every day. When you constantly focus on what you don’t have, you can lose sight of what you do have. Instead, try to be positive. Gratitude will help carry you through.

11. There is danger in comparison.

Don’t look at your life through the lens of someone else’s. Their life isn’t better or worse, it’s just different. Besides, you don’t know what struggles they face behind closed doors. The soccer mom with designer clothes and seemingly perfect children may have had a really horrible, difficult day and just hides it really well.

12. Don’t begrudge someone else their difficulties because yours may be different or seem worse.

This isn’t a competition to see who endures the most pain. Everyone struggles in life. Be sensitive to one another.

13. Appearances aren’t always what they seem.

Give people the benefit of the doubt. Try not to make assumptions without knowing the whole story. That meltdown from a screaming child in the grocery store may be the result of sensory overload and not a “bratty kid and bad parenting.” If you can’t say something helpful, then it’s best to keep your opinions to yourself. Keep your mouth shut and don’t judge. If someone else says something you find hurtful, don’t be quick to take offense. Instead, try to discern their heart and intentions.

14. Remember everyone responds differently to stress.

Unexpected experiences can make some people more compassionate, but it can make others appear hard. As you go through life, you may find you switch back and forth between these responses.

15. Don’t be afraid to say no.

Establish boundaries and save your energy for events and activities that will have a positive effect on you or your family. If something would be too difficult, then decline the invitation. Don’t set your yourself up to fail by getting into a situation you know would be problematic or overly stressful. The well-being of your family is your first priority, and those who really care about you will understand that.

16. Cut out the negative people and add in the positive.

If a person is draining your emotional energy or doesn’t “get” you or your child, it’s OK to invest less time in them. Find a community of people who will encourage and care for your family. It’s also helpful to get input from multiple informed sources and experts. Build a team of individuals who you trust.

17. You are your child’s best advocate.

Trust your instincts. Don’t be afraid to fight for accommodation in the schools or ask a doctor for a second opinion. I know many parents who have circumvented problems by being persistent and questioning the experts.

18. Love and accept people for who they are, rather than who you expect them to be.

That includes acceptance of any sort of medical diagnosis your child may receive, but don’t allow the diagnosis to limit anyone’s hopes for them. If you are a parent, remember your child’s journey is their own unique adventure.

19. Celebrate every new milestone and accomplishment.

Be sure to tell your child how proud you are of them. Take time to rejoice in their growth and achievements, no matter how small they may seem to outsiders. Celebrate your own victories, too!

And finally,

20. Be kind.

Enough said.

A version of this post originally appeared on Seriously Not Boring. You can also find Jennifer Bittner at her Seriously Not Boring Facebook page.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) 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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