To the Special Needs Parent Who Feels Like You Can’t Face Another Day

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I feel alone.

My husband was right: There are bad storms out tonight. I can hear the wind and rain slamming against the house as I lay next to my oldest son — my 10-year-old for whom I had to write a note to his teacher so he could be excused from late homework assignments. My 10-year-old who was up past 11 p.m. and still couldn’t finish it all because he had to help me take care of his two brothers and father. My 10-year-old who is more of a man at his young age than most are at 40.

For those of you who can relate, you are not alone.

The skin around my eyes is sticky from tears and panic attack sweats,  from guilt and exhaustion and frustration. Remember, you aren’t alone.

When your insurance changes again and the one doctor you so desperately need doesn’t accept your new insurance — you aren’t alone.

You dealt with your child’s school again today because your child with autism (or any diagnosis) told the teacher to shut up again or made a fist to hit his teaching assistant. You cried again because you can’t make him learn multiplication. You know he’ll learn it on his own or he won’t — but you can’t get people to understand it’s his frustration and inability to communicate that leads to these behaviors. You aren’t alone.

When you try to explain again to your autistic child that he or she is not stupid or the “bad angel,” when they repeat over and over they want to be dead or disappear, or worse yet, “I don’t have autism anymore” — you aren’t alone.

Your child breaks out in hives for the 72nd time and you still can’t figure out what is causing it, but it’s getting worse and worse and close to anaphylaxis. You are desperate to figure it out before it gets to that point or before he or she dies. You panic. You get sick over the worry. Insomnia takes over. You aren’t alone.

When your medically complicated husband has been in the hospital four times in three weeks and the issues just keep coming and you think, What else?! — you aren’t alone.  12348174_1111560595528965_8269535698474653519_n

When you cancel your own necessary doctor appointments to take care of everyone else and suffer in pain, severe sickness and fatigue with an immune system that no longer exists, in part because of your overwhelming life — remember you aren’t alone.

After that headache continues for three or 10 days because you feel like you are drowning under all the crap your family has to deal with every day — every single day — you aren’t alone.

You are afraid to leave your partner’s side because his health is bad and it’s panic-inducing, but you have to and wonder the whole time if he or the kids with him are all right. You aren’t alone.

When you get that note from your disabled child’s teacher, again, that says, “We need to talk” about A, B or C and you roll your eyes and kick the cabinet door because you just don’t give a sh*t due to the rest of your life falling down around you — you aren’t alone.

When you burst into tears in the middle of the living room in front of your children because your cup overfloweth and you just can’t take any more — you aren’t alone!

Your medically fragile partner takes longer than normal to come home from a doctor appointment and you worry he is in the hospital again or got in a car accident. You aren’t alone.

When the baby won’t stop crying or climbing on things or escaping your makeshift barricade, and the school is calling again, and your partner is admitted to the hospital for observation, and you want to explode because you’re sick, too — you aren’t alone.

When everyone is finally asleep before midnight and you can’t sleep even though you are desperate, your mind is racing and you just don’t know how to face another day — remember, we are not alone.

I am not alone. I am not alone. I am not alone.

I am mighty.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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To the Person Just Diagnosed as Autistic

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So you were just diagnosed as autistic. Or you just figured out you may be on the spectrum. Or you’re just now accepting and embracing your diagnosis. Maybe you were diagnosed in childhood. Maybe you’ve always known. Maybe you never even thought until this very second that you could be autistic. That’s OK. There are so many different variables to autism.

But they are all OK.

It is OK to be autistic. There is nothing wrong with it. You are not broken. You do not need to be fixed. You are more than a puzzle piece. You are not a burden on your family. The world would absolutely not be better off without you, whatever the media may try to tell you.

Your voice deserves to be heard. It doesn’t matter if you are verbal or nonverbal. You have a voice — it’s just a matter of people choosing to listen to it. It doesn’t matter if you talk with your hands, with your vocal cords or with augmentative and alternative communication (AAC). No matter how you talk, your voice is beautiful and has value. Don’t let the world silence you because you don’t meet their cookie-cutter mold of how you should be.

It’s OK if you need to stim. It’s OK to flap your hands. It’s fine to take your stuffed animals places with you. It’s OK to comfort yourself in public. Whatever you do, it’s a part of what makes you you, and it is beautiful.

It’s OK to meltdown, be it at home or be it in public. You can’t control it. You aren’t lesser of a person or have less worth because you are simply overwhelmed. The world is scary — sometimes there are too many sounds and smells and things touching you and it completely overwhelms you.

It’s OK to take care of yourself. To pull away from the world and take care of yourself. Don’t let it get too extreme where you are damaging your mental health; but taking care of yourself is OK. Letting people know you have autism is OK as long as it doesn’t put you in acute danger.

There is nothing wrong with having texture aversions to food. There is nothing wrong with eating the same thing. As autistics, our routine is valuable. It’s OK if you want your routine. It’s OK if you don’t want a routine and it makes you feel more on edge. It’s OK to have a loose routine. And it’s fine if you are involved in something and your routine gets thrown off if it changes.

It’s OK to have your own comforting routines, like listening to the same song over and over, watching the same movies over and over, playing the same video game over and over and reading the same book over and over. These things are always the same, no matter what we try to do to change them, and in a world that always changes, it’s OK to have something consistent.

It’s OK to have scripts. To have quotes. To have things that make you calm and help you communicate. It’s OK to have your interests — the things you fully throw yourself into, whatever they may be. It’s OK to know obscure facts about them. (I know obscure facts about “Sesame Street” and that’s OK.) It’s OK to like things that are deemed childish and too young for you. I refuse to be ashamed of my love for things that are supposed to be too young for me. I fully believe that while there may be a minimum age for some movies, shows, books and games, there is no maximum age, and as long as you enjoy it, who is anyone to judge you?

It’s OK to have your own sensory needs. Be comfortable. Don’t force yourself to dress a certain way because it’s what the world expects you to be like. If you’re the most comfortable in yoga pants and a T-shirt, rock it! Most comfortable in tunics and leggings? You do you!

You may be socially awkward. You may not know how to start or stop talking with someone. You may just wander off awkwardly online or in real life. You may not know how to make friends. Believe me when I say that someday, you will find those friends. It may take some time and it may be a difficult road, but it will happen, I promise. And I’m willing to be that first friend if you need.

It’s fine if you don’t like to make eye contact. People will understand. And if they don’t understand and force you to make eye contact, they aren’t people you need in your life to begin with. It’s OK if you need a safe person, be it a friend, a family member or a care person, to go places with you. It’s OK to be scared. It’s OK to do whatever you need to do.

I don’t need to be cured. I don’t need you to be aware of me. I don’t need you to tell me that the world would be better off without me because I am on the spectrum because guess what? You’re wrong. I don’t lack empathy, and anyone who says we lack empathy has truly never known one of us. In fact, I’ve found my autistic friends to be far more empathic than the ones who say we lack it. In my case, I feel empathy so deeply that I often need to just shut myself off. It’s not that I don’t feel it. It’s that I feel it too much.

Autism is beautiful. Autism is unique. Autism is a part of what makes you you. There is nothing in this world wrong with being autistic. Choose to use first-person language, if that is what you wish to embrace. Choose to be proud of your diagnosis (self or professional). Be open and honest with your friends. Let them know how to be your friend.

And above all, be your own friend and relish in the beauty of your autism.

Follow this journey on A Heart Made Fullmetal.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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 Submit a Story page for more about our submission guidelines.

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Temple Grandin Tells Parents to Stretch Kids With Autism Outside Their Comfort Zones

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Dr. Temple Grandin, Best-selling author, autism advocate and animal science professor, is asking parents of children with autism to do one simple thing — push their kids.

Grandin says pushing children with autism may be the key to their future success. In her new book, “The Loving Push,” Grandin and co-author Dr. Debra Moore offer a roadmap to caregivers on how to prepare youth with autism for being adults in today’s world.

The book includes the stories of eight people on the autism spectrum and chapters on subjects like how to get kids off their computers and how to build on their strengths. The key, Grandin says, is to push them to do things for themselves and to do things that may at first seem scary. While this may be difficult for caregivers, it is ultimately the best way to find safe and fulfilling avenues of interest for their children.

“You have to stretch these children just outside the comfort zone,” Dr. Grandin tells Fox 5 News in the video below. “You stretch just enough so they develop, but don’t go into meltdowns and problems.”

Get more on the story from the video below: 

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To the Store That No Longer Carries My Picky Eater’s Favorite Snack

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Dear Costco,

When we first met, I have to admit I was entranced. You offered so much and so many things, mostly at a discount, in astonishing sizes.

I could get 12 giant rolls of paper towels at one time, gallons of milk at the least expensive price per ounce I could find and stock up on enough canned goods to last for years.

Sure, I could rarely get out of the store without paying a huge bill, but the overall savings and reduced number of shopping trips made it worth it.

You were also amazing about introducing me to new things. Then you would stop carrying the new things or stop carrying the old things. It would be frustrating and disappointing.

And I have now reached my limit for frustrating and disappointing. The issue: dried seaweed.

A couple of years ago you started carrying dried seaweed. It looked like a healthy snack, so I picked it up and it was delicious.

But even more fantastic was that my son, the Navigator, liked it. He ate it as a snack all the time. I was delighted. As far as snack foods are concerned, seaweed appeared to be an all-around win. Plus, it was pretty much the only green vegetable the Navigator would eat.

Then, one day, the seaweed disappeared. When there is something your picky child on the autism spectrum loves, you really need it to be available. In a mild panic, I searched every corner of the store. Repeated inquiries to employees were for naught. The good-for-him snack food that doubled as a secret vegetable was no longer available.

Then I got irritated. Fine. I would find it somewhere else.

Enter Amazon. I had been exploring the benefits of being a Prime member and discovered its “Subscribe & Save” program where items would be delivered to my doorstep on a regular basis. No shopping trips!

Of course, not everything available on Amazon was less expensive than at Costco, even after taking into account the time and driving. But when I saw I could get seaweed delivered monthly, I signed right up.

That’s right, Costco, you have lost me to Amazon as a seaweed-purchasing customer. Plus, some other things, too. Don’t worry, you will still see me now and then — you still have the lowest price per gallon for milk around. I am just going to spend more time with Amazon, that’s all.

We can still be friends.

Don’t smirk, Home Depot. Remember that kitchen faucet you sold us and then didn’t carry the replacement hose? You’re next.

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When Christmas Is Both Exciting and Anxiety-Inducing for Your Child

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Christmas was my favorite holiday when I was a child. It was a holiday that touched almost every aspect of our culture, both inside and outside the home, in a way that no other holiday did.

Everywhere I would go and everywhere I looked, things would be changed for Christmas, from holiday music and Christmassy store displays to seasonal crafts we did at school.

We brought a live tree into our home and covered it with lights and bright, pretty things. The house would be full of beautiful things I wasn’t supposed to touch or could break easily. There would be unusual amounts of sweets and desserts to eat almost daily.

Our routine would change, and we might stay out late for a Christmas party or drive around the neighborhood in the dark and see the decorations on the houses.

And, of course, there would be the impending break from school and the anticipation of the gifts on Christmas morning. I loved the Christmas season.

My son gets very excited about Christmas, too, but his excitement isn’t always fun for him.

All the changes that take place during the holiday season that I loved as a child can cause him stress simply because they are changes to his environment and to his routine.

He may love that Christmas is coming but still feels anxiety about the changes.

He loves that a break from school is coming but still feels anxiety about the transition.

He loves seeing the neighborhood light displays but can still feel anxiety about being out in the dark and away from the security of home.

He loves that he will get presents at Christmas but may feel anxiety about not knowing what he will receive. Surprises can be a double-edged sword for him.

Days of excitement and anxiety can have a cumulative effect, leading to his “checking out” — just shutting down to block out sensory input — or meltdowns when his sensory overload point is reached.

Over the years we have developed strategies to help him maximize the fun of the Christmas season and limit the anxiety as much as we can.

I know to limit his exposure to Christmas decor and displays at stores following Thanksgiving. (I hate coming across those stores that start featuring Christmas items before Thanksgiving.)

We have a Christmas season routine we try to keep each year so he knows what to expect — things like cutting down the tree the weekend after Thanksgiving, limiting the sugar he consumes, decorating only certain spaces in the house and keeping him in the loop about seasonal activities.

We include him as he wants to be included and don’t force him to participate if we see signs of overload. He may put five ornaments on the tree and then disappear, and that’s OK with us.

He may ask to see the neighborhood lights, but we don’t force him to go out if he doesn’t want to.

Every parent wants Christmas to be exciting for their child. For us, it is a matter of maintaining a balance of sharing the excitement and helping him feel safe.

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness during the holiday season, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

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Mom Finds Out Why Son With Autism Wasn’t Afraid of This One Mall Santa

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Santa’s known for being an understanding guy, but we still appreciate when he shows real empathy to the kids who adore him.

Four-year-old Nash Nickerson has been mostly nonverbal until this past August when he began saying a few words. Now, when he sees a Santa, he’ll say, “Santa! Ho, ho, ho!” but his mom, Kristy Nickerson, wasn’t sure if he fully understood what St. Nick was all about. And any Santa in person always scared Nash — until he met the one below.

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Last Wednesday when Nash, who has autism, met a Santa at the Tamarack Centre in Cranbrook, British Columbia, he jumped right on his lap. Nickerson didn’t know what made this Santa different but was just moved to see how the two interacted.

“[Nash] couldn’t answer any of Santa’s questions of what he wants for Christmas,” Kristy Nickerson told The Mighty. “But Santa just kept talking to him in a very hushed tone and was so calm and kind.”

As they left, Santa whispered to Nickerson, “Does he have autism?” When she replied yes, he smiled and said, “So does my grandson.”

“In that moment, I knew why my son was so friendly and willing to just sit with this stranger,” Nickerson said. “I also felt so much relief knowing we weren’t being judged and no one was thinking, ‘What’s wrong with that boy?’ He was simply accepted and seen for who he is… a wonderful little boy.”

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