Inside My Meltdown

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Today I had a meltdown. Today’s meltdown wasn’t as dramatic to witness as the meltdowns I have suffered in the past, but nevertheless it was hard for both me and my carer. She struggled to understand what it was like for me, so I tried to explain. I said it’s a bit like a bottle of fizzy drink. Every time you shake it, the pressure builds up. Eventually the lid will shoot off! It gave me an idea, though. Maybe I should write about what it’s like to have a meltdown from the inside view.

Let’s set the scene for today’s meltdown. Stress has been building up for a couple of weeks, starting with various health issues, a gastroscopy done under general anesthetic (which made me unwell), my landlord refitting only half of my windows, a new fridge arriving and finally an accident in which I ripped the linoleum in my kitchen. By themselves each of these things may not be such a big deal, but like the bottle of fizzy drink, every event has shaken me up inside.

I knew I was going to melt down at some point today, I just didn’t know when. I lose the ability to talk first, which for anyone who knows me means that something is really wrong. Words stop making sense. Every time my carer speaks to me, it feels like she has punched me in the head (I will point out that this is not an actual punch!). I can hear construction at the building site across the road. My mind is racing, but I can’t make sense of the information clogging up my brain and making it feel foggy. When I talk, the words come out wrong, and I feel like I am trying to talk with a mouth full of peanut butter.

By this point I am aware that just one more little event could set off the meltdown. I start to self-stimulate by flapping my hands, rocking, shaking my head side to side, slapping the back of my hand over and over again and biting it. These “stims” send good information to my brain to try and counteract the stress hormones flooding my body. I feel tense, like my body is caught in a vice. My head feels so full. Just as I am starting to regulate myself again, the phone rings. It’s someone from my care agency’s office telling me that my landlord said I have to replace the whole linoleum floor in the kitchen. It’s the final shake…

My body starts to tremble. I feel electric-like jolts shoot from my head to toes. The room feels like it has been pulled away and I am in a blurred bubble of rage. Aside from some angry shouting, words fail me. I start to scream out of complete frustration and inability to express my feelings. I start to viciously attack my own body, a desperate attempt to bring myself back from the top of the meltdown.

Thankfully, I was able to take myself to my bedroom. This is something I have only learned to do in the past year or so. Before my meltdowns would have lasted a lot longer, been a lot more dangerous both for me and my carers (not to mention anyone or anything else in the room) and would have ended with a sudden drop of energy, followed by a long sleep. Today, the techniques I have learned over the years came together and allowed me to safely remove myself, put myself in a safe space (namely my bed) and allowed myself to let the emotion out just long enough to feel better before rocking violently from side to side for half an hour. This last thing can look like a loss of control from the outside, but the violent rocking brings the focus back. Slowly the fog begins to lift, my body releases tension and I become aware of my surroundings again.

Although this was a much less serious meltdown than previous ones, I give myself plenty of time to recover. Luckily my carer had an hour-long break, and after she checked I was safe, she could leave me to recover alone. As tempting as it can be to confront or check on me constantly during a meltdown recovery, leaving me is actually the best thing as it stops further unwanted input confusing my already-fried brain. Eight hours later, I still have a “meltdown hangover.” It could be two or three days, possibly even another meltdown or two before I fully recover.

So that is my inside experience of a meltdown. It is a scary thing to witness, but trust me, I am terrified, too.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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.

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When Taylor Swift Gave My Son With Autism a Life-Changing Gift

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Our family is completely astonished that Taylor Swift would do something like this for a complete stranger.

My son Jacob was diagnosed with autism at a young age. He often tries to wander from safety. He may dart into the street or try to run straight to water — and it would be a challenge to ask for help or know how to get to safety.

boy in mickey t shirt wearing red headphones
Allison’s son, Jacob.

We have done everything we can to keep Jacob safe. Our doors are dead-bolted from the inside, and we have alarms on all our doors and windows. When we go out into the community, either my husband or I have a hold of Jacob. Now that he is older, we started looking for tools to give him more independence. He wants to walk without being held onto, but that is unsafe in most situations.

I decided to apply for a service dog program for Jacob through Autism Service Dogs of America. These dogs serve as companions for the children, but also as physical anchors to keep them safe. They can also provide deep pressure upon command for anxiety and sensory needs. I was thrilled to find out he was accepted into the program.

For years, my daughter Jordan and her cousin Makaylee have come up with cool ways to raise money for autism organizations, either through lemonade stands or snow cone stands. But this past year, they covered a Taylor Swift song and posted it to YouTube and raised over $1,000 for charity. So when they heard we needed to raise $13,500 for the service dog, they went into action writing their own version of Taylor Swift’s “Blank Space.”

two teenage girls smiling
Jordan and Makaylee.

We posted the video to our GoFundMe account, and Taylor saw it and donated $10,000 to help us get Jacob’s service dog. Taylor and her mom Andrea left a note saying, “Jacob, we hope you love your new dog! Please tell your cousins that they did a great job on the song! Love, Taylor and Andrea Swift.”

We will never be able to express our gratitude to the Swifts for this donation. My daughter and her cousin are thrilled Taylor saw their video and liked it, and even more thankful that the service dog is now fully funded. I am so happy their efforts to help Jacob paid off in such an unbelievable way, and even more stunned that Taylor Swift did this for our family.

We are forever grateful to Taylor and Andrea Swift. Thank you so much. Jacob’s life will truly be changed forever.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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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When Many of Your Child’s ‘Firsts’ Happen With Therapists

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It could be said that one of the many joys of parenthood is witnessing “firsts.” Mothers often long to witness their child turn over, crawl, walk, eat “yucky” peas and blurt out, “Mommy.” My journey as a mom is a bit different. Many of my son Drake’s firsts have happened when I am not around.

Of course, many mothers may miss their child’s firsts. This could be due to the child being with another caregiver or being in daycare. The difference is this: Usually when a child says their first word, the word will be repeated over and over. New words will be added in the days to come, and the joy of hearing those new words wears off. Life goes on, kids develop and the routine and chaos of life takes hold. It can be easy to take those firsts for granted. But for me, one of the blessings of having a child with autism is learning never to take anything for granted.

Drake said his first word almost one year ago: “Hug.” Such a beautiful, magical, sweet word. I received a text from his therapist, Melissa, on the day he said it.

I was thrilled, ecstatic in fact. Drake said this beautiful word again, in nursery at church, to someone who loves him dearly. This gentleman told Drake to give him a hug, and out of the blue, he uttered the word, “Hug.”

I haven’t heard this word at all, and it doesn’t bother me one bit. What matters to me is that he has the ability to communicate. I believe with all my heart that Drake will talk one day. The road may be long and it will be a process, but I believe he will talk.

A few months ago, I pulled out a puzzle Drake had trouble with for many months in therapy. Because his fine motor skills are sometimes weak, he needed lots of hand-over-hand help. He hated puzzles and would object any time I pulled one out. One day, out of the blue, he put each piece in perfectly. I was astonished. I was thankful. He persevered, and with encouragement mostly from his therapists, he learned to put the puzzle together.

Drake has accomplished so many firsts with the help of the due diligence and talent of his therapists. Here is a list of his accomplishments thus far:

Drake has learned how to communicate effectively through signing. He now knows several signs and uses them to communicate most of his needs. His speech therapist, Quincey, is also teaching him how to use an AAC communication device.

Drake plays games at clinic with other kids several times a week. He takes turns,
engages and loves every minute. Because of this, now he likes to play games at home.

Drake has learned the importance of play and how to interact more appropriately with his peers. In the last few months, I’ve noticed him trying to engage with other children far more than he ever has. All of these play skills have been taught and encouraged by his amazing therapy team.

Drake now enjoys having books read to him. I think one of the great joys of motherhood for me is being able to read a book to my child.

So you see, firsts for me are not all that important. What is important is Drake’s development and success. I trust Drake’s therapy team completely. They work hard to help him learn and be successful. I don’t care if Drake utters 1,000 words to them before he says them to me. The end result is all that matters. I want Drake to continue to learn, develop and feel comfortable in his own skin. I believe it is because of these amazing therapists that he is gaining confidence and beginning to understand this complex world.  

I don’t think there are enough words in the English language to thank the people who get to witness these firsts. And while, I know we are blessed with an amazing therapy team, there are some who have not been as lucky. Each first Drake’s therapist has with him gives him confidence and assurance to do it again. When we work on things at home and he succeeds, he looks at me with a big smile on his face. That is learning at the best possible level. He is happy he can accomplish things that were once difficult for him. I know Drake has a long road ahead of him. I know there will be difficult days, but these amazing ladies have paved the way and given him so much confidence to be successful. I cannot imagine where we would be without their support, help, knowledge and love.

Little boy playing with toys

Follow this journey on Walking With Drake.

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New Program to Help Kids With Autism in the Emergency Room

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A trip to the emergency room is stressful enough, but when you add in the extra sensory sensitivity that children with autism often experience, it’s that much worse.

With this is mind, Nemours Children’s Hospital in Orlando, Florida, is piloting a new program aimed at reducing stress for children on the autism spectrum who visit the emergency room, the Associated Press reported.

As part of the program, a child life specialist is brought in and staff are trained to reduce the use of unnecessary monitors and expedite tests and consults. In addition, soothing, stress-relieving things like a separate, quiet waiting room or playroom, headphones and sensory brushes to help distract children are offered.

Research studies are underway to evaluate the pilot and the Alfred I. duPont Hospital for Children, in Wilmington, Delaware, a sister hospital to Nemours, is currently planning a similar program.

This isn’t the first time a hospital has made changes in order to make the emergency room more accommodating to those on the spectrum. In 2014, Capital Health Medical Center – Hopewell in New Jersey launched an initiative to make its pediatric emergency department autism-friendly, which included reducing the use of florescent lighting, having the options of using iPads to communicate with patients and offering “sensory boxes” near the nurses’ stations with toys of different textures for patients to choose from, NJ.com reported.

“We’ve got all these tricks up our sleeves, but it’s not so much about the hardware or software,” Dr. Zach Kassutto, director of the pediatric emergency department at Capital Health Medical Center – Hopewell, told the outlet. “It’s really, in my mind, about working with parents and working with the kids and really listening.”

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What I Want From School for Both of My Kids, With and Without a Disability

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When I try to teach our oldest son how best to respond to some of his younger brother’s actions to avoid a meltdown, he generally assumes he is “just not good with him.” For the most part, I take this as normal behavior between brothers who have an age difference of five and a half years, with one in elementary school and one in middle school.

One day after school, my older son, shared with us that P.E. was “stressful.” He explained he was in the same group with Don, who is generally an easygoing and happy kid. He does not speak in full sentences, is slower due to tiptoeing while walking or running and has trouble following directions and participating in P.E. routines. Apparently, only one girl in the group was able to communicate effectively with Don and help him participate. I was pleasantly surprised to learn that other children, my son included, viewed the ability to engage with Don as a valuable asset. This led to a conversation about how learning to relate to his brother more effectively can be a great practice for situations in school. Don’s presence during just one class did more for my son’s motivation to learn a useful social skill than all my explaining and lecturing prior to that.

Our younger son is in a special day class due to his autism-related needs, and although I appreciate the small class size, I am concerned about the exclusion and isolation it brought to his and our lives. It drastically limits his opportunities to socialize in inclusive settings. And I believe it also deprives students without disabilities in the mainstream classrooms from opportunities to learn how to engage with children of various abilities.

Up until now, I advocated for an inclusive education environment for my son with autism, focusing mainly on how it would benefit his ability to integrate into society and become a productive member. But now I also wish my older son would have more experiences like the one in P.E., more opportunities to interact meaningfully and collaborate working toward common goals with children his age who have different abilities. I think it enriches him as a human being, builds his communication and leadership skills and helps him be a better friend and brother.

Having a child with disability changed the way I see and react to other people. I realized how quick I have been to judge and to stare in disapproval or disdain. Mainly because prior to having a child with autism, I had no opportunities to socialize with people who are wired differently than me.

What I want for both of my children is a society where one is not automatically seen as a “freak” due to being different, and the other is not automatically “freaked out” due to not knowing how to react to this type of diversity. Socialization starts in the family, but the main vehicle for it, in most cases, is the school.

With the 2015 estimate by National Center for Health Statistics that 1 in 45 children in U.S, ages 3 through 17, have been diagnosed with autism spectrum disorder, I believe it’s time to reconsider how special education is provided in public schools and the impact it might have on our future as a society. Personally, I am worried seeing missed opportunities daily in both of my children’s education and social lives.

Lead photo source: Thinkstock Images

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To Those Who Say They ‘Get’ My Autism Because They Know Someone on the Spectrum

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“If you’ve met one person with autism, you’ve met one person with autism.”

I’m not sure if people don’t understand that phrase very well, or if it’s quickly forgotten.

Each and every single person on this planet is different. Where you find people with similarities, you’ll find those people also have massive differences. Between your interests, the foods you eat, your health, family, schooling, religion, parenting styles, ambition — there are so many things you could potentially have in common or not in common with another person.

And that’s a good thing! It’s what makes this world amazing! It’s what keeps life from getting boring. It’s what helps inspire others.

It’s the same with autism. We are not all the same, and it’s ridiculous to think that we are. We may have similar characteristics, have something in common — but besides being on the spectrum, we may have absolutely nothing else in common.

Some people on the spectrum might have the ability to talk, and others need help communicating. Some might have severe anxiety. Or have severe sensory issues, where even soft clothing with no tags can feel like sand paper against their skin. Another may need deep pressure, or to constantly feel textures because their body says they need it in order to feel OK.

So my child on the spectrum may be completely opposite of someone else’s child on the spectrum. Which is OK! That’s life. But we shouldn’t shame others or say ugly things to people because what we imagine autism to be isn’t the case for someone else.

Everyone’s experience with autism can be unique.

And while I appreciate people trying to understand autism and be more aware, your cousin’s friend’s brother who has autism probably isn’t going to end up being the same as me or my kids who are on the spectrum. So you might not “get it.” It’s really about the wording we’re using.

But you know what you can say?

“My cousin’s friend’s brother has autism, and I think that’s pretty cool. He’s a really great kid. What’s autism like for you? I’d like to learn more.”

I don’t know too many people who would turn down the opportunity to raise some awareness and share a bit about themselves or their children.

Lastly, for those who feel the need to compare and contrast people and kids on the spectrum and then belittle others for disagreeing or having a different experience, the rule applies to you, too.

Stop comparing. It’s fun to find similarities, but stop disputing the differences. Everyone is different.

If you’ve met one person on this earth — you’ve met one person on this earth.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. 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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