Melissa with her two daughters

When You Feel Like an Outsider and an Insider as a Special Needs Mom

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I’m a mom to two little girls. My oldest, Anna, is 4. She’s just as funny and loud and precocious as any 4-year-old can be. My other daughter, Zoey, is 3 years old. She was diagnosed at 21 months old with autism, sensory processing disorder and global developmental delay. She was considered severely nonverbal with no guarantee of speech, but if you’ve followed our journey on Facebook, you can see by her videos that she’s proving them wrong.

We have some pretty significant challenges in our family, and we have to take extra precautions to ensure safety for both of our girls. With a 4-year-old and a 3-year-old, you have be quick and ready for anything. Zoey’s still in diapers, and I don’t know when she will be out of them. She can’t stand the way clothes feel on her, so she often strips down to nothing. Going places is almost impossible because anything could set her off. Bringing her into stores, birthday parties, county fairs and even family gatherings can trigger a meltdown. We’ve learned through trial and error what works and what doesn’t work.

My daughter is impulsive and doesn’t understand the dangers of streets, strangers, bodies of water, fire pits and big, barking dogs who may or may not be good with small children. She can’t tell me or anyone else if something’s wrong or if she’s hurt.

I see families apple picking, hiking, biking, taking trips to the circus, going to soccer games and birthday parties, and going to the movies as a family. I would love for the four of us to go out to a movie, but that’s not our life right now.

I watch all this from the inside of my own home. I’m inside, but I’m the outsider. I’m the mom watching these beautiful and fun family moments from my computer screen. I’m an outsider looking at your moments from inside my home, hoping and wishing that someday I won’t be the insider — I want to be the outsider having these moments with my family. It’s hard to explain that to friends and family who ask us to get a babysitter or come along to the circus, the fair or a birthday party.

So what’s it like to be on the inside? 

I am a stay-at-home mom and I’ve had the honor of watching my girls go from being babies to funny little toddlers with their own individual personalities. 

I’ve been here through 14 months of intensive in home therapy for Zoey, sitting on the floor, watching her learn and grow, and I learned and grew from the experience as well. She let me into her world, and let me tell you — her world is full of music and smiles. I look at her and I know she’s happy. I got to witness her “go away” and then come back in an amazing way. She has taught me what hope, faith and love — unconditional love — truly mean.

I’ve watched my beautiful and quick-witted Anna become stronger and wiser. She’s an old soul in a 4-year-old’s body. She’s shown me just how much she loves her sister, and I have witnessed their relationship turn from nonexistent to one of the strongest bonds I’ve ever seen. To watch your 4-year-old light up after hearing her younger sister say her name for the first time… well, nothing on the outside can even compare to that. 

I watch them run and play and laugh all through the house. We may not get to go to the movies, but we have movie nights at our house, and I watch my two girls sit together and share a snack. I’ve watched Anna help Zoey, and I’ve watched Zoey learn to interact and have a relationship with her sister. They love each other, and that makes being on the inside not so bad. 

Being on the inside, I have a front row seat to the biggest and best event I’ve ever seen: My children, my husband and I have become a closer family. We all love each other unconditionally. That makes being on the inside not so bad.

So for now I will be that mom watching your moments from the inside, wishing I was on the outside. But I will also be that mom who is grateful for being inside watching my family and our love for one another grow.

Follow this journey on Life of Zoey.

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Fridays Waiter Gives Boy Unique Discount After Hospital Visit

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Kindness doesn’t have to be complicated. A TGI Fridays waiter proved that.

On Tuesday, Oct. 6, Jen Goodhand-Wyatt took her son Oscar to Fridays in Warwickshire, England, on the way home from a hospital visit. According to her Facebook post, Wyatt went inside the restaurant first to make sure no Halloween decorations were up. Oscar has autism, and frightening decorations particularly bother him. After explaining the situation, the host let Oscar pick their table — he chose a “Star Wars”-themed one. Wyatt mentioned her son was a “‘Star Wars’ loving superhero.”

When the waitress came over, she turned to Oscar and said, “I understand you’re a superhero. Here’s your menu.” The comment bummed Oscar out though, because his cardiologist had just told him he couldn’t do karate anymore because of his heart condition. He therefore didn’t feel much like a superhero.

A new waiter later came by to check on the table, along with two balloon models he’d made for Oscar. He then asked Wyatt if he could treat Oscar to dessert. When she asked why he replied, “Because he’s a superhero.”

When Wyatt received the bill, she noted the pudding cost had been instead marked as the “Superhero” discount. She posted a picture of it to Facebook:

 

Talk about service.

h/t redbook

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What I Tell My Son on the Spectrum When He Feels Left Out at School

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Just be yourself. Every parent has said those words to their child. Just be you, and everyone will love you. For many years of childhood, those words can ring true. Then come the preteen years and our children must wonder what the heck we were talking about. It’s hard to tell a child who stands out that being themselves will work out just fine when they’re living the opposite. My son, Jack, is one of the most unique, insightful, hilarious and creative individuals I have ever met. Those qualities aren’t always appreciated by other 12-year-olds. Throw in the fact he also happens to have some social and learning difficulties, and the tween decks are even more stacked against him.

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Jack was born a comedian. When he was an infant, his angelic face drew many an admirer on our errand travels. During one such encounter, an elderly woman gazed into his face, cooing with adoration. He responded by blowing a huge raspberry in her face, scaring her half to death. He then broke out his mischievous grin. To this day, his wit is quick and infectious.

When Jack was a toddler, his inner artist began to blossom. I would find Jackie treasures all over the house and in our yard. My candles would be stacked in an artistic tower. There would be mosaics of sticks and pebbles in the garden. The front doorknob would have a smiley face drawn on it. He would yell in protest as I threw out a piece of trash, and moments later, it would be turned into colorful caterpillar.

And then there are the Jackisms. Many of his simple thoughts on life have grown to become cherished family philosophies.

“People are always moving so fast, and they’re missing all the good stuff.”

“When someone is sad or angry, they just need to be hugged. It’s hard to stay mad when someone is squeezing the yucky stuff out of you.”

“Kind people feel warm like sunshine, don’t they?”

Out in the world, he is not afraid to share his love and wisdom with others. He told a grouchy lady ringing up our groceries, “Are you having a bad day?” She smiled and responded, “I’m sorry, does it look like it?” Jack kindly answered, “A little bit. But that’s OK. Everybody has them. Tomorrow will be better.”

How lucky am I to be this boy’s mother? To share my days with him? It’s hard to stay in a bad mood with your very own ray of sunshine living in your home. It’s hard to be unhappy when you’re joined by someone who finds beauty and inspiration everywhere. I often think about the lucky people who will share their lives with him in the years to come. I also think about the unfortunate people who will miss out on knowing him. He doesn’t always fit in so easily, and so many discount those who are different.

Jack is currently in middle school — right in the thick of conformity. Not long ago, Jack came home in tears after someone on the bus told him, “No one wants to talk to you because you’re weird.” I tried to comfort him as best I could. At the end of our conversation, I kissed his button nose and whispered to him, “He doesn’t know the magic he’s missing.”

To Jack and all the magically different children who are trying to fit in, we need you. You color our world. You will write the songs and stories that will inspire us. You will create beautiful art for us to enjoy. Thank goodness we will have your comedic genius to make us laugh when there is so much to cry about in the world. You will create the things we never knew we needed, but then can’t live without.

Right now, you’re in a time in your life when children are afraid to be different. It seems that fitting in is the most important thing. This time will be hard for you. You are too bright and sparkly to hide. But stay strong and be brave because your time is coming. Don’t let the insecurities of others cause you to hide away your gifts. They are afraid. Afraid to be themselves, and therefore afraid to let others be themselves, too.

Before you know it, the tide will turn. The same kids who were trying to be like everyone else will soon be trying to stand out. That will be your time. Your talents and what makes you unique will be right there, perfectly ripe for the picking. That will be the moment to start manifesting your magnificence.

Earlier tonight as I worked on my laptop in bed, a quiet boy snuck up alongside me and placed a folded paper on my keyboard. He knew I had been through a difficult and emotional day. He kissed my hand and said, “Ta-ta for now!” then somersaulted out of my room. I opened the paper. It was a hand-drawn comic strip featuring a maniacal-looking character who first slips on a banana peel, falls off a cliff, gets pinned under a giant boulder and finally ends up in a hospital bed wearing a giant body cast. Underneath were the words, “Things could always be worse. I love you. Jack.” I chuckled to myself. Aaahh, the magic they’re missing.

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10 Things I Needed to Hear Most as a Child on the Autism Spectrum

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As a kid on the autism spectrum, I received a lot of pressure to blend in and hide differences. As an adult on the autism spectrum, I now know what the consequences are for that kind of pressure.

When you are young and traits that are part of who you are receive negative reactions from people — especially from parents and teachers — it can quickly erode your sense of confidence and well-being. This, in turn, creates a perfect storm for self-loathing and depression.

Interventions aimed at hiding differences, interventions that establish a goal of blending in — I believe these can potentially devalue individuals and do more harm than good. Therapies and supports can be a necessary aspect of life on the spectrum; I’ve just learned they work best when they are based on respect for a person’s unique personality and way of being.

I think about this a lot when parents ask me, “My child/teen hates their differences and their spectrum diagnosis…how do I help them?” Unfortunately, this is by far the question I receive the most.

With that in mind, here is a list of 10 things I needed to hear most when I was growing up on the spectrum. I don’t know if this can help others think more clearly about who they are and how they relate to the world. I just know that, for me, getting better meant reversing a lot of the feedback I was getting from the rest of the world. (And to be honest, my adult self could have used some of this a little sooner as well.)

Ten things I needed to hear:

1. You will hit social/developmental milestones in your own time, in your own way… and there’s nothing wrong with that. Ignore those who say otherwise.

2. Trying to “fit in” will make you feel miserable. Actually “fitting in” will make you feel worse. You’re different. Go with it.

3. Forcing yourself to hold eye contact will make you feel more alienated, not more connected.

4. Forcing yourself to mimic body language will make you feel more alone, not less alone.

5. Navigating the obstacle course of small talk will always feel mentally exhausting. You’ll begin to feel happier when you learn to politely avoid it.

6. Social awkwardness is your social radar; when people react poorly to it, you know to avoid them. When people are accepting of it, they’re the ones to trust. Your awkwardness: love it, use it.

7. When you feel shame, it means you’ve absorbed the values of the wrong people. When you feel at peace, it means you’re living on your own terms.

8. When you feel resentment for the socially adept, it means you’re trying too hard to be someone you’re not. When you feel acceptance and compassion for the socially adept, it means you’re living on your own terms.

9. Many people do not value difference. What’s important is that the right people value difference. Avoid the former. Surround yourself with the latter.

10. You can’t do it alone. You’ll try…you’ll lose hope that it’s even possible to receive help or feel connected to another person. But the good people are out there. Finding them will be worth the effort.

Follow this journey on Invisible Strings.

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.

Lead photo source: Thinkstock Images

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What to Say and Not Say When I'm Having a Meltdown

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I don’t experience meltdowns often, but when they do happen, it’s such a heightened state of emotion that the details of how I feel, what triggered it and how to recover fades with every hour after I’m in a relatively calm state. I can’t speak for everyone on the spectrum, but I can tell you how I feel about them, and I hope that in doing this, some of what I say may help someone else, especially parents of autistic kids who don’t have the ability to explain things. I’m 36, and I barely have the insight needed to advocate for what helps me recover from meltdowns.

This afternoon I had a meltdown. It was an epic one that had been building for quite some time. When it hit I was unable to identify it and stop the torrent of emotions from flowing out. What triggered it was not one thing, and with me it almost never is. I had been operating above the level of my capacity for a couple weeks now. School enrollment and appointments have devoured my days. So much paperwork and talking to people. Social engagements, and all the while keeping up with regular household stuff, had me teetering, too. I knew I was teetering, but there was not much I could do.

I used every coping skills available to me, but it was not enough. On top of the demands, a few different people in this small time frame had treated my son, Bubby, poorly. (He is not aware of the rejection, or what was said about him in two of these incidents.) Not only was I beyond sad for my big-hearted son who does not deserve this, but I was/am feeling as if I failed him in some way. This was the last straw. This took my last spoon, and it was all downhill from there. I had a meltdown, passed out from exhaustion and have been recovering for the rest of the night.

When I’m in a meltdown situation, it’s the worst, rawest, most desperate feeling in the world. I’m out of control, and my world is spinning. Sometimes I might cry, but that isn’t often. As a matter of fact, not much emotion ever registers on my face, so there is little for the other people in my presence to clue into other than my behavior.

So, what do (usually) well-intentioned people say when I’m having a meltdown situation?

“Have you tried not caring about _______?” Now this is a fair question. Usually what I’m ranting on about seems out of proportion to my emotion. It seems small to others, but in reality what I’m ranting on about is often not even what I was upset about to begin with, or it was just the last straw that set off the catastrophic firestorm inside of my head. This question feels like an attack to me in the vulnerable state I’m in. It’s really downplaying the very real situation I’m trying desperately to gain control of.

“You need to calm down.” That one is my favorite one to hate. No one likes to be told that when they’re upset, so I really don’t feel like I need to explain why I don’t like hearing this during a meltdown.

And, the last one isn’t so much a phrase, but there’s always someone who feels the need to observe all of the times in which I’m not making sense, or how my behavior (to them) is inappropriate to the situation. They give me the rundown on everything they don’t like about what I’m saying, or how I’m saying it, even though this feels extremely patronizing and is probably the worst thing to do. It’s the adult version of taking away privileges for misbehaving, which I am adamantly against any adult doing to a kid in the middle of a meltdown.

I know sometimes we are rude and difficult during a meltdown. I’m not saying we should just get by with doing whatever we want and saying whatever we want, but please try to understand that a meltdown is a situation likely occurring because we’ve exceeded our limits of coping. Help us get back down to a calm level. We likely don’t want to be nasty. We want to feel better, but we can’t gain control over the situation. We don’t need to be told that we’re not behaving well. We know this. We just can’t stop, and telling us about the consequences or that we’re not being nice is like throwing gas on a fire. I already feel worthless and like my world is ending during a meltdown. I don’t need to be told more negatives.

So, what is a good response, at least for me?

“I see you are upset/hurting. How can I help?” or “I’m sorry you’re feeling so bad. I am here to support you when and if you need it.”

That is it. No criticizing. No arguing with me. And above all, no more demands. Reassure and support. Don’t react and engage.

Follow this journey on Thoughts of an Introverted Matriarch.

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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App for People With Autism Has One Thing All the Others Are Missing

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A new mobile app could involve people on the spectrum in the development of their own new technologies for autism.

A consortium of British researchers from the University of Bath and the Universities of Southampton and Sussex released ASCmeI.T., which is an app that allows users with autism, as well as family members, teachers, therapists or anyone else involved in the autism community, to share their ideas about what kinds of new technology are needed, according to Modern Design Technology (MDT).

They can upload a one minute video which will be shared with researchers so that new autism technologies can be better matched with the needs of people within the community.

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Via iTunes

This project is totally unique and encourages ‘citizen science,’” Dr. Mark Brosnan, co-investigator on the project from the University of Bath, said, according to MDT. “ASCmeI.T. is a simple yet highly effective way to enable people with autism to get their voices heard and to allow the creativity of a previously neglected group to be realized.”

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Via iTunes

The app is free and available for download on mobile devices.

h/t MedIndia

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