8 Things I Wish I Knew Before My Autism Diagnosis at 22

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I am one of many women diagnosed with high-functioning autism in adulthood — far outside my developmental years. For me, my diagnosis (and my “new” life) came at the age of 22. For some women, it doesn’t come until late adulthood, if at all. These are some of the things I wish I knew before I received my diagnosis later in life. They’re also the things I want my friends and family to know now, because I was never able to express them effectively before.

1. You know just how much other people mean to you — but they don’t.

Before receiving my diagnosis, my close friends and family had a negative image of me. In their eyes, I was sometimes rude, I said inappropriate things at the wrong times or I said something honest when it was best to tell a little lie. I’ve been told that I don’t care enough about my friends, that I push people away and even that I don’t love my family. This couldn’t be farther from the truth. In reality, I love and appreciate most of the people in my life to an almost unhealthy extent. My diagnosis gave me the life-changing reminder that you need to tell people you love them and to show as much appreciation as you feel.

2. You’ll find an amazing companion to share your life with, but it’ll take time and effort.

I was lucky enough to have my loving, neurotypical boyfriend at my side before, during and after I received my diagnosis. As one may imagine, we have a lot of struggles that are directly linked to my autism: communication issues, sensory difficulties and sometimes needing time to myself. As I mentioned above, I also have to remind myself to show my appreciation for him, which is sometimes as simple as remembering to ask him how his day was. However, our problems aren’t so unlike other couples’ that we can’t work through them — it just takes more consideration and effort. You’ll find someone, too, if you’re romantically inclined (but you might not be!). You’re just as capable of finding love as anyone else.

3. If you never reach out to your friends, your friends will never reach out to you.

When you’re feeling overloaded and just need time to yourself, it’s really easy to skip out on plans. You never want to disappoint your friends, so sometimes you don’t reschedule… because you might have to cancel again. Before you know it, it has been years since you last spoke to them. Be honest and upfront if your plans change, and put effort into connecting often.

4. You’re not “crazy.”

I suffered with mental health concerns for most of my life before receiving a diagnosis. I struggled with suicidal thoughts, self harm, mood swings, debilitating depression and even health problems brought on by stress. I was previously misdiagnosed with a myriad of mental illnesses and medications never worked. I thought I was a lost cause until I received my diagnosis. Now I have coping strategies and a community of people to turn to when I’m feeling overwhelmed or depressed.

5. You’re not weird.

Are you obsessive? Super into animals or classical literature? A band most of your friends don’t care about? You’re not weird. Those obsessive interests are a perfectly normal part of your diagnosis. You care more about a single topic (or handful of topics) than most people do about any of their hobbies. You’re awesome, and you can harness that intense focus to do a lot of good in the world. Make art, write books and inspire others.

6. You’re not lazy or unintelligent.

I struggled to hold down a job and stay in college full-time before receiving my diagnosis. I now know that this was because of sensory overload, social exhaustion and executive functioning difficulties. In other words, I couldn’t juggle real life as well as other humans. Choose your jobs carefully, practice time management and take time to recharge at the end of the day.

7. You’re not ugly for dressing comfortably.

This one is mostly for the ladies, although it can spread across all genders. You’re not any less feminine for dressing comfortably because of your sensory issues. I’m often perceived as lazy and not “girly” enough, when I just dress for comfort most days. You’re beautiful no matter what you wear and don’t let society pressure you into thinking otherwise.

8. You’re you. And you’re wonderful.

Like me, you might be a mess most days. You may not be friends with your diagnosis right now. However, your diagnosis is a manual to living a more successful, fulfilling life. Use your strengths, know your weaknesses and work on the social aspects you struggle with. It’s so worth it.

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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When My 6-Foot-Tall Son With Autism Sat on Santa’s Lap This Year

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I was a theatre major at the University of Vermont some years ago, and my family and I still live in the area. And every year at Christmastime, the theatre department puts on a show called “The Toys Take Over Christmas.” It’s a children’s show they have performed every year for almost 25 years.

When my boys were little, I always wanted to take them to the theater, my old stomping ground, for this production. Unfortunately, I couldn’t. My older son, TJ, has autism and sensory issues and had a difficult time in crowds. Putting him in the middle of a theater production with lights, music, bright colors and lots of other kids in the audience was a recipe for disaster. So nope, for us, the theater was out.

When TJ was 10, after eight years of working with therapists and teachers on his sensory issues, we thought he might be ready to give it a try. I had recently gotten back in touch with Alan, a costume shop supervisor and friend from my UVM days, who told me that the night before the weekend of performances they open the show up to the special needs community. The tickets are free, lights are partially up and there are signers there for the hearing-impaired. I was scared and excited all at once. The theater, and that theater in particular, was so much a part of me, and I wanted to share it with my family, but could TJ handle it? Alan encouraged me to give it a try, so he set aside for tickets for me, my husband, Sean, TJ and Peter, our younger son.

When we got to our seats, both boys were excited as they checked out the scenery. It was a toy store, and there were brightly wrapped boxes, two soldier actors, a rag doll actor looking asleep and tons of teddy bears. TJ looked at the program as we all got settled into our seats on the aisle just in case we had to make a quick sensory overload escape.

Suddenly TJ yelled, “Mom! Santa — as himself! It’s the real Santa!”

Now Alan had already told me that “Santa” was really my friend, Patrick, the theater department’s technical director. TJ had seen plenty of Santas before and knew they were really helpers of the big man, but he still believed 100 percent that Santa was real, and I didn’t want to burst his bubble.

Lo and behold, both boys loved the show. They laughed during dances and slapstick falls. They sat wide-eyed the entire time, taking in the story. And I noticed as the play went on, TJ sat closer and closer to the edge of his seat, waiting for Santa.

When Santa appeared, I saw a glimmer of my friend, Patrick, but he was head-to-toe immersed in Santa, from the beautiful costume to the rich warm voice. And TJ was hooked. 

After the show, all the kids walk up the aisles to the upstairs lobby area, where all the cast members were handing our candy canes and posing for pictures, and the kids were waiting to sit in Santa’s lap.

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TJ and Peter waited patiently, and when it was TJ’s turn to sit in Santa’s lap, he asked nervously, “Santa, am I on the naughty list?”

Santa chuckled as he looked at me with a small grin and looked back to TJ and said, “No, TJ, you’re not on the naughty list, but I think your mom might be!”

My jaw dropped as I laughed, and Patrick/Santa quickly said he was only joking and we were all on the nice list. Good cover, Patrick.

Anyway, from that moment on, Patrick was TJ’s Santa. 

TJ is 15 now. His younger brother no longer believes in Santa, but TJ still does. 

TJ and I went this past Friday to the play at UVM and to see our old friends, Alan and Santa, again. This time, TJ was the first one in Santa’s lap. He didn’t have time to mess around. He worries every year that he’s on the naughty list and wanted to be reassured that he isn’t. He also wanted to make sure Peter was on the nice list, even though he didn’t go to see Santa himself.

As TJ plopped down into Santa’s lap — all 6 feet of him. Sorry, Patrick! — Santa said, “TJ, you’ve grown about a foot this year!” 

TJ asked if Peter was on the nice list (he was), asked if I was on the nice list (whew! I was, too!) and showed Santa his wish list. After Santa took a quick look, he turned to TJ and said, “TJ, I hear you’ve been walking home by yourself from school this year. That’s great!”

TJ looked stunned as a slow smile lit up his face. I started to tear up, realizing that Patrick had read a previous piece of mine describing the lengthy process of getting TJ ready to walk home from school by himself. It was a huge, proud accomplishment for him, and a big step for me in terms of letting go as TJ grows up.

As we drove home with TJ talking excitedly about Santa (“Mom, he’s my only friend who’s immortal!”), I felt so thankful for this experience and for these people. They welcome us, and the special needs community, every year. They give us the gift of a magical experience, and they keep the magic of Santa and Christmas alive for my 6-foot-tall young man.

So thank you so much, Patrick, Alan and the UVM Theatre for this gift you all give of yourselves each year to our special kids.

It is magic, indeed.

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Help Me Navigate the Holidays With Autism

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The holidays: an equally wonderful and intense time. There’s so much joy, love and community, but also so much stress, anxiety and chaos. While that’s true for anyone, for some individuals with disabilities it’s overwhelming. Being part of the autism spectrum, I equally love and loathe the holidays.

Every year I have a loosely planned expectation in my head: when I’m shopping, when/what/if I decorate, when/what/if I make treats and what events I want to partake in. It’s the fairytale version of doing it all, seamlessly with my regular schedule while enjoying every moment. And every year I hit a point halfway through December when I start to shut down. Expectations don’t happen. Plans frequently vary. There’s a strain on time and energy. Looking back, there are little signs peeking out a few weeks before I start to shut down. More anger flare-ups, more inflexibility with changes, unable to perform the usual amount or flow of daily activities and feeling blank and zombie-like.

My mom would say I do it every year. For years I’d deny it and try to plow on until I reached a breaking point, but I’ve come to understand myself better to see when it’s happening, and I love and am gentle with myself enough to give myself permission to be that way —  to not have as much control as I’d like. I may have to adjust a lot (which likely includes giving up some of the previously envisioned intentions), but this year I’m OK with that.

As my coping is currently decreasing, here are the biggest things I know are pivotal for me to navigate the holidays with autism and to actively be a part of the festivities with minimal or no repercussions— because I do want to participate.

1. Let me know about finalized and possible plans and functions at least a week in advance.

A good two weeks (or more) is even better. This ensures I can schedule accordingly, and if something is really important, I can include it in how I account for energy and being present. If necessary I’ll find other activities that can be compromised to make room for yours.

2. Recognize and respect my need for extra downtime outside of regular obligations.

A majority of spectrum individuals are energetically sensitive, myself included. We’re naturally more in tune with and involuntarily pick up a lot from our environment. When things are going well it’s usually just our immediate surroundings. During the holidays, however, we can pick up and feel everyone and everything in the house, community and country. We shut down quicker and need extra recuperation than usual to get to a solid base. Please let us have that, especially on stressful days.

3. Even if I rarely show up at events, please continue inviting me to them.

I always feel bad if I don’t actually make it. It’s not because I don’t care or wasn’t interested. Sometimes it’s because of previous obligations or the location. Sometimes it’s because the day or hours before I didn’t have the energy or ability to attend without sacrificing current functioning. Regardless, I am there with you and enjoying it in spirit. Whether I’m absent a few times or a lot, keep including me in opportunities. It lets me know you love, appreciate and care enough that you do want my presence there and I will be warmly welcomed whenever I’m able to attend. It means more than you know.

4. Help me prepare a plan if I become overstimulated or can’t handle any more.

No matter how well functions go, there is almost always a point where we need to leave soon. Or now. If we’re lucky that’s the natural end of the event. Knowing my telltale signs of when I’m starting to withdraw or lose functioning will help both of us, whether it’s from your own observations, specific body cues we’ve agreed upon or me directly saying I’m reaching the end and am pretty much done. We’re trying to avoid becoming so overstimulated that a meltdown or breakdown could occur, and we don’t want that. If we can’t leave, help me find a safe, quiet space where I can collect myself uninterrupted.

5. Be flexible with how things play out; gently support and remind me the “new way” is OK, too.

Extra activities equal higher energy taxation. This might mean more time getting ready, as we’re probably dealing with the anxiety of the impending event or that we’re not able to fully interact or stay as long as intended. By staying calm and flexible, you help us breathe and (start to) let go of rigidity. If we begin to stress out too much, calmly telling us the “new way” is OK lets us know you support us. We need to hear that.

6. Continue to love me, no matter what form I’m in.

We often beat ourselves up for not fully materializing our intentions. There are days we can handle it better, but there can be days where functioning is lower and we’re only able to do self-care. Above all, continue to show and tell us how much you love us, no matter how we look that day. We’ll always take note, appreciate it and give the same love back.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. 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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12 Things Parents of a Child With Food Aversions Know to Be True

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Food aversions that go beyond being “picky” are real. Texture, smell, color and appearance all can impact someone’s ability to eat what is in front of them. It can be challenging as a parent to manage these aversions and still make everyone happy. But happiness is just a state of mind, right?

Here are 12 things I believe parents (or some parents) of kids with food aversions know to be true.

1. We are sick of chicken nuggets.

2. This is what our menu looks like.

Meme source: Autism Odysseys on Facebook

3. We get really excited when our child tries a new food.

4. We get even more excited when it’s healthy.  

5. We brag about our successes.  

6. We know their Christmas dinner will be chicken nuggets.

7. We will look this when the broccoli comment is voiced by the relative who thinks he’ll eat when he’s hungry.

Photo source: Psych/USA. Meme source: Autism Odysseys on Facebook

8. We know he won’t just “eat when he’s hungry,” because we have tried it and he didn’t eat.

9. There may be times when a meltdown is imminent and your child wants ice cream. You’re going to get them ice cream.

Photo source: Marvel/Deadpool. Meme source: Autism Odysseys on Facebook

10. Your child loves fast food places but doesn’t love eating it there, so you use the drive-thru. The staff might even know you.

11. By the time you get home and get your kids set up, your food is guaranteed to be cold.

12. Your coffee is guaranteed to be cold, too.   

Follow this journey on Autism Odysseys.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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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27 People With Autism Who Are Clearly 'Incapable of Empathy'

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The myth that people with autism spectrum disorder (ASD) don’t have empathy is an incorrect and harmful one, and it stems from misinformation. While people with autism may find it difficult at times to interpret others’ feelings based on social cues, that doesn’t mean they’re incapable of being empathetic. And while people with autism may also express their feelings in unconventional ways, that doesn’t mean they don’t have them.

We asked our readers with autism, or those who have loved ones with ASD, to share their favorite photos of some beautifully empathetic moments.

Here are 27 pictures of people with autism (who supposedly are “incapable of empathy”), doing just the opposite of that:

1. “This is my 5-year-old son with autism with his arm around his little sister to comfort her and help her feel safe. We were at a parade, and the loud drums scared her.” — Lauren Casper

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2. “This is my son with his kitten. Having a pet has enabled him to show his ability to care about and empathize with another living being in a way he currently cannot show towards other humans except in extremely rare instances.” — Elizabeth Campbell

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3. “To give his little sister ‘kisses,’ he just touches his head to hers. If he ever accidentally bumps our little girl or hurts her and she cries, he cries because he feels so bad. If I’m ever upset, he always comes to me to sit with me.” — Mindy Bock

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4. “My 11-year-old has autism. From the moment my fourth child was born, the two had an instant bond. She loves him so much. He is now 2 and also has autism. They just get each other.” — Vanessa Robbins

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5. “My oldest son has autism. He was not an instant fan of his baby brother when he arrived, but now they are thick as thieves. The little guy likes to sit inside boxes and totes, especially when he is tired or sick. This picture shows my oldest climbing in with him one day and asking, ‘Are you OK?’ His brother gave him a huge smile back, hugs were exchanged, and they played a while longer.” — Valerie Werner

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6. “We adopted an older cat last year, and my 5-year-old daughter with autism loved her instantly. When talking about where she came from, my daughter said, ‘I will take good care of her. I will make her happy. I love her so much.'” — Heather Hall

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7. “Here’s my daughter ‘lacking empathy’ as she helps her little brother learn to play a new app on the iPad. She kept encouraging him, saying, ‘You just have to keep trying, Monkey. You will learn how if you don’t give up!'” — Wendy Eanes Steadham

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8. “In this one, my 4-year-old autism spectrum disorder daughter came, played with and cheered up her little sister, who clearly has her own issues.” — Kendra Hopkins

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9. “[My son] was 5 when we fostered a litter of kittens and their surrogate mother. He loved those kittens so much, if they cried he would want to know what was wrong with them.” — Ruth Peterson

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10. “My 3-year-old son has autism and has so much empathy! He is very affectionate to everyone, especially his new baby sister. Anytime she fusses or cries he runs over to comfort her.” — Kel Billings

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11. “This was me during my freshman year. The reason I look so sad there is because this was the day my cat (the one in my arms) was diagnosed with feline leukemia virus (FeLV). I wept for hours and hours because I knew this poor kitty (who had acted as my service animal without even being asked to) had just been given a death sentence. This picture truly shows how even with autism, I’m able to experience a full range of emotions — I just experience it differently than neurotypical people do. Maybe I can’t read between the lines while communicating with others, but that does not at all inhibit me from caring about others and sharing feelings and desiring to help others.” — Emma Wozny

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12. “When he thinks someone isn’t feeling well he will love on them until he nearly smothers them. I took this picture when both he and his puppy were not feeling great. Puppy had some shots and my son had a tummy flu. He still wanted to love on his puppy… I know what people see when they see my son, but I also know what they do not see, what cannot be shown through a single simple picture.” — Holly Hartranft

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13. “Here’s my daughter, with autism, 7, snuggling Mommy during my last hospitalization. Out of all four of our children, she is actually the most empathetic and sensitive of them all. She hates to see others in pain and will cry immediately if she thinks she has done anything to hurt your feelings. Autism does not equal no empathy.” — Kate Sytsma

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14. “My 5-year-old twins who are both on the spectrum show empathy every day, especially to each other. When one was afraid to slide the other said, ‘Let’s go together, I’ll protect you.’ When one was very sick the other made her cards and read to her. When one had to go to the doctor without her, the other asked to make her sister ‘boo boo cookies.’ They hug and snuggle all the time. And the time they found an abandoned baby squirrel in their play house they begged me to save ‘Dave,’ so I found someone who would help him, and we gathered him up on warm towels in a box they made up for him and off we went to save Dave… If they don’t know and show empathy, then I don’t know who does.” — Erin Tusar

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15. “My son has nothing but love in him, especially for his brother. He gets upset when someone is sad or crying and wants to comfort them. Don’t tell me that autistic kids are not empathetic or affectionate. Maybe they are just picky about who they want to share themselves with.” — Karyn Hebbaz

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16. “My son, who’s almost 5 and is diagnosed with autism, loves his little sister no matter how much she drives him crazy. I’m so glad I caught this moment — when her hat fell off, he put it back on for her.” — Kristy Nickerson

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17. “This is my 4-year-old ASD son giving his 8-month-old sister a kiss, completely unprompted. He brings her toys, shares his favorite comforter with her, picks up things she has dropped and copies things that she does and noises she makes. She adores him and the feeling is 100 percent mutual.” — Anna Rona

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18. “I walk just about everywhere. On my travels, I come across all sorts of beasties that have found their way onto the sidewalk or road where they could be injured by people who can’t see them. I have escorted earthworms, slugs, snakes, caterpillars, newts and any number of beetles to a safe place. I am 32 and have done this my entire life. I also have Asperger’s.” — Grace Gungadee

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19. “My son feels empathy often for people, animals and movie/book characters. He’s my biggest comfort. In this photo he’s bringing his sister a dandelion because she was too tired to keep playing and needed a rest.” — Allison Urbanczyk

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20. “This is my 25-year-old son with autism with his great grandmother last year. She passed away this April after battling Alzheimer’s. He was her baby, the light of her life, and the only one she seemed to remember towards the end. He would always sit close with her and love on her like this. I will treasure these memories forever.” — Kelly Renee Smith

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21. “My sister passed away in June. I have days where I struggle. My sweet boy made me a ‘book of positive for grieving days’ which I stapled together and carry in my pocket. He will also stop whatever he is doing and cuddle with me if he sees that I’m having a hard day. He’s been one of the most empathetic people through this process.” — Dawn Human Nicholas

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22. “This was the first time our son really acknowledged his new sister. She had only been home for a short time and he walked up and gently laid his hand on her. It was so sweet and tender. He doesn’t always know how to express himself but he does love and care deeply. He has shown us that over and over again.” — Christa Brower

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23. “My 2-and-a-half-year-old wanted to make cupcakes for his sister because she was sad that morning and he missed her while she was at school.” — Lexie Nooyen

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24. “Here’s my beautiful 5-year-old nonverbal autistic son giving his dad a kiss. A bond and a love that only actions can express.” — The Funny Side of Chaos Facebook page

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25. “Here are my twins, both ASD, holding hands supporting each other.” — Miriam Gwynne

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26. “This is my son showing his love to his dad.” — Sonya Green

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27. “Our son is not only empathetic, he is overly empathetic. If someone else gets hurt and cries, it’s almost as if he feels it and he cries real tears too. We can no longer watch live TV because if there is a commercial in which someone gets upset or sad it upsets him greatly and can cause him to meltdown…. When he reaches in to hug a sibling when they are hurt he still uses his body and head rather than his arms, but they know it’s his way of hugging.” — From the Bowels of Motherhood Facebook page

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*Answers have been edited and shortened. 

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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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