Her Parents Want Her Brother With Autism to Move In With Her. She Said No.

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For some parents of people with special needs, it’s a question always in the back of their minds: who will take care of my child when I’m gone? Some expect their other children to fill their shoes, while others wonder if it’s fair to ask it of them.

After 24-year-old Reddit user Throwautistic had a tense conversation with her parents about the future of her brother with autism, she turned to an online community for advice. The user’s parents expect her to move her brother, who’s five years younger than her, into her home and offer him full-time care after they pass away. The young woman would prefer to find him an assisted living facility where he can be more independent. According to the user, her parents see this as abandoning her brother.

They told me I was being selfish and they were very hurt that I wouldn’t help him,” the user wrote. “My parents are so sad and I don’t know what to say to comfort them. What can I do? Am I being too selfish? Some insight would really help me.”

More than 200 comments rolled in. Redditors responded with words support and advice. Take a look at a few answers:

1. “You are an adult. You have the right to make your own decisions. Do what works for you.”

2. “I’m watching my mother deal with a high-needs sibling (not autistic so not quite the same) and even with the sibling in a home, it is [expletive] hard. It’s not a question of loving or not loving your sibling, and it’s not a question of abandonment. It’s a question of the reality of a high-needs condition.”

3. “Having your brother in a supported group home is not abandoning him. It’s allowing him to have his own life.”

4. “Has anyone asked your brother what he wants to do? He’s a person with wants, needs, and desires too.”

5. “Separately clarify to your brother that just because you are moving away does not mean that he isn’t loved by you.

See the whole conversation here.

What’s your take? Should brothers and sisters be expected to take care of their siblings? Let us know in the comments below.

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A Love Letter to My Future Wife, From Your Autistic Husband

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I was 5 years old the first time I knew I’d fall in love and get married one day. I envisioned meeting you by the time I turned 25, having kids when we were 30 and maybe most importantly, being the happiest I’ve ever been in my life.

We’ve certainly come a long way. When I was diagnosed with autism at 4, my entire life changed. I went from a life of not knowing what was wrong and why I had limited speech to therapy appointments to help me become the man I am today. I now travel from state to state speaking on overcoming obstacles with autism, and you often travel to these events with me as my number one fan in the audience.

I’m going to show you unconditional love in everything we do every day we’re together. I went from never wanting to be touched as a kid due to sensory overload to a life where I embrace affection. When we get into fights, I’m going to try to communicate as much as possible to understand your perspective. When I need alone time to wind down when I feel overload, I plan on telling you, too. And when our successes come, I’m always going to tell you how proud I am of you.

Our wedding day will be one of the happiest days of my life because you will be there by my side. When we talk about having kids, I will look toward my parents for advice and guidance based on their experiences with me. I want to grow to be the same dad that my dad was for me — there for me in good times and in bad with my chin held up high.

You see, love is something I’ve always wanted. It makes me feel anxious at times with a ton of butterflies in my stomach, but it’s a feeling that brings the best out of me. Something about it made me feel uneasy as a kid, especially when I was being bullied. One peer when I was in high school told me I would never find anyone to spend my life with because I was different. It hurt me to my core to hear that.

But I knew that would never be my life. I’ve had several girlfriends, and I couldn’t have asked for a better one than you. I knew it wasn’t a matter of if I’d find you one day, but when it would happen.

Thank you for embracing who I am, quirks and all, and for being the love I’ve been waiting for my entire life. What we have is a love that lives in serenity, and I wouldn’t ask for it any other way. I’ll always be thankful for you for that.

I was inspired to write this love letter after reading the beautiful words written from Sara LeeAnn Pryde on The Mighty from her story, “A Love Letter to My Neurotypical Husband, From Your Autistic Wife.” I’ve always believed love is something that brings people together, and I wanted to say thank you to Sara for sharing her heart with the world like she did. I’m currently dating an amazing girl, and I know there’s someone out there for everyone. I can’t wait to see where life takes all of us next!

A version of this post originally appeared on Kerrymagro.com.

The Mighty is asking the following: Write a love letter to someone special in your life. What do you wish he or she knew? How has he or she made a difference? 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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When a Hug From Your Child Is the Rare Moment You Long For

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We all have those times in life when we look back at an event or moment and wish we had a picture of it. Sometimes there are moments that you just wish you had something to look back on.

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I am so thankful someone captured this picture for me. Many people would look at this picture of my son, Trenton, and me embracing and think nothing of it. To most parents, it’s just a simple mother/son moment. However, to me, it’s much more than that.

My son has severe autism. On most days, he’s unable to even look me in my eye. Therefore, a simple gesture of giving me a hug is a very rare occasion. I can count the times on one hand he has put both of his arms around me and embrace me like he did in this picture. 

A simple gesture most parents take for granted is nothing less than a miracle in our house. There are days when I long for a hug, a moment of eye contact, a kiss, a simple touch or even just a smile. My motherly body craves those simple gestures from my children like a newborn baby craves his mother shortly after birth.

In that moment in the photo, I am truly taking it all in. I wanted to hold him forever. My eyes were closed as I tried to hold back the happy tears. I never want those moments to stop because the next moment could be months away.

A simple hug is what gets me through my days as I anticipate when the next one will come. A simple, rare hug makes all the sleepless nights, tears and daily challenges worth it.

This picture is much more than a rare moment; it’s a symbol of my love to my son with severe needs. It doesn’t matter how hard things can be from time to time, I’m right there by his side each step of the way. We embrace his challenges together and we always will.

This picture speaks a thousand words, but, at the same, it hides so much. No one would know from looking at it that Trenton and I were both up the entire night before. I was chasing Trenton around our house while he displayed his night-time behavior due to his autism. The picture doesn’t reveal that he’s a nonverbal child with severe sensory problems and has been in therapy since he was 18 months old. No one would know that behind this picture is a true fighter and a little boy with a lifetime of challenges ahead of him.

We are true warriors in our house. We embrace each moment, live minute by minute and do what needs to be done daily. Behind our struggles and tears are amazing moments. We thank the good Lord for the good times and welcome the bad times with open arms. Somewhere in between those times are moments captured in time forever like a simple hug that comes from nowhere.

Follow this journey on Two Brothers, One Journey.

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Illinois May Be the First State to Allow Medical Marijuana Use for Autism

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Illinois is well on its way to becoming the first state to allow autism as a qualifying condition for medical marijuana use.

On Wednesday, Oct. 7, the Illinois Medical Cannabis Advisory Board recommended eight conditions and diseases be added to the list of 39 that are already approved under the Illinois Compassionate Use of Medical Cannabis Pilot Program Act. Those conditions are chronic pain due to trauma, chronic pain syndrome, chronic post-operative pain, intractable pain, osteoarthritis, irritable bowel syndrome, post-traumatic stress disorder (PTSD) and autism. Two board members voted against recommending cannabis for people with irritable bowel syndrome or autism, according to the Chicago Tribune.

The director of the Illinois Department of Public Health (IDPH) must still approve the recommendations. If approved, Illinois would be the first state to allow medical marijuana use for autism, The Associated Press reported. To use cannabis, children must have signatures from two doctors in Illinois, and adults must have one.

“It would give clinicians and families another option to manage the symptoms of autism,” board chair Dr. Leslie Mendoza Temple told the AP.

The 39 conditions and diseases that have already been approved to qualify a patient to use medical marijuana in Illinois, with a doctor’s signature, include cancer, glaucoma, HIV, hepatitis C and multiple sclerosis.

Last month, the state health department rejected 11 new conditions recommended, including PTSD, with Governor Bruce Rauner’s office saying it was premature to expand the pilot program before the drug goes on the market in the coming months, according to the Chicago Tribune.

The state has reported that about 3,100 patients have already been approved to buy the drug under state law, and they will begin receiving their patient ID cards by the end of this month. People with the newly recommended conditions need to await approval before they can submit applications to participate in the program.

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What You Don’t Know About the Perspective of a Special Needs Dad

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I’ve always garnered strength (and the best info!) from a community of dedicated moms. Noticing a void amongst the fathers who must crave that same sense of community, I asked for a dad to submit his perspective of parenting a child with special needs. No one was more surprised than me when my own husband sent this.

Whether by choice, influence of society or just by the sheer fact that I am a handy fellow, I’m often posed with the question, “Can you fix it, Daddy?”

A simple question on the face of it. Glue this, bend that, reattach (insert random doll appendage here). But in reality, it’s a much deeper question for a dad. Being a dad is more than just fixing toys. It means being caring, tough, loving, stern, thoughtful, funny and strong all the time, and sometimes all at once. It means being a good role model in your thoughts and actions, a role model of how to love and treat your family and significant other. It means losing sleep and adding (or in my case losing) gray hairs when you realize you slipped up and didn’t have all the right answers. When you let your family feel pain or worry. When you failed to “fix it” whatever today’s “it” happened to be.

This is the daily struggle for a dad. How to keep his family happy, healthy and provided for. How to balance demands from work, home and family — again, all the time and sometimes all at once. You learn to be a master of multi-tasking, hoping you’ve remembered everything, only to realize you forgot to grab bread and milk on the way home. You internally curse yourself and vow to try harder tomorrow.

A dad’s work is never done. If you’re like me — a dad to a child with special needs — the pain and struggle are always front and center. You quietly burn inside watching your child experience relentless seizures. You feel you heart shatter when you watch their siblings cry and feel helpless. You feel like failure when you see sadness in your wife’s eyes. But these pains only strengthen your commitment to try harder, to stay strong, to love more. If we seem distant or quiet, we’re not. We’re thinking a thousand different things a thousand different ways. Ways to help, ways to love, ways to fix the troubles we face. When something needs fixing, we want to be the one you turn to.

To feel true joy as a dad, you learn it must come from your family. It comes from seeing your children discover new talents. The school play, a band concert, or even a homemade volcano. It comes from watching them set and achieve their own goals. Joy comes from watching your spouse’s hobbies and talents take off. The light in your child’s eyes when you glued their favorite figurine. A family day at the beach filled with laughter and fun is the fuel that dads run on. Every day you search for these moments. When you find them, you grab onto them fiercely. Because you know there are some days that are just plain awful. You need to tap these memories to keep yourself moving and maintain a positive outlook for yourself and family.

We often get caught up in making things perfect. In reality, when your child asks you to fix something, the expectation is only that you are there to help. To lend a hand, an ear to listen, a shoulder to cry on. It doesn’t need to be made whole or perfectly like new. They just want to know their problem is important to you and that you are there for them. Which of course, as a dad, you always will be. “Can you fix it Daddy?” I hope so, sweetheart. I hope so.

Follow this journey on Seizing Hope.

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When a Woman in a Nail Salon Became the Nurse Who Saved My Son

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On a Monday morning, after another night of experiencing contractions off and on again, I was ready for a pedicure to distract me from the pain that was coming, and because I probably wouldn’t be getting one anytime soon after the baby arrived. My mom and I arrived there at 11 a.m., and I picked out the best OPI color, Pink Flamenco. As my toes dried, I started to feel the contractions coming on stronger.

I paced the back of the salon and took some deep breaths. I noticed a woman getting a manicure who kept looking over at me and smiling. This is not unusual when you are pregnant. A pregnant belly is a magnet for older woman to smile and ask questions. After meeting eyes with this woman, I told her I couldn’t have my baby in the nail salon. She said, “Actually, you could. I am a labor and delivery nurse. Where are you delivering at?” I responded with the name of the hospital, and she said she had just finished her shift there. She told me if I had the baby that week (and she confirmed I looked close at that point), she would be there. She just had foot surgery and said she probably wouldn’t be my nurse, but she would definitely look for my name when she was working.

Now fast forward to Tuesday at noon after my son, Jack, was born. The morning was filled with a doctor’s visit and family visits, and the news of Jack having Down syndrome was settling in. We still didn’t have much information on his physical condition. Jack was still in the baby warmer in our room. I asked my husband, Chris, what his emotional state was at that point, and he said he was so unsure of what he was feeling, if our baby was going to be OK, if he was not going to make it — just a sense of confusion.

Diane, the nurse from the nail salon, saw my name on the list and came down to visit our new baby boy. She came in knowing Jack had Down syndrome and said, “You grieve the baby you thought, and you love the baby you were given. I came down to meet your beautiful baby.” At that moment, as we looked over him in the warmer, Jack started choking. He started gagging for air. Diane immediately asked who our nurse was, told Chris to push the nurse button, turned Jack downward and started firmly patting his back, then paged the NICU and said the word STAT. She told us to pull the cord, and her firm pats turned into forceful blows. 

Flashes of my first-aid training came flooding through. If you have ever been trained in it and then see it done, it can be frightening. Jack was turning blue and a hue of purple. We stood there in silence as three people from the NICU ran into our room and tried to get Jack to breathe.

He was taken to the NICU for monitoring and for some tests. They brought both Chris and I back to sit with him. I was emotionally numb and felt like I was going to throw up. I remember sitting in the rocking chair and thinking to myself, I don’t want to be here. I can’t do this. I said to Chris, “I just need to go lie down. Are you OK if I go back to the room?” Again, Chris stayed with our baby and watched as they stuck tubes down his throat and did numerous tests on him. When he came back, I could see it in his body he was broken. Tears streamed down his face.

After a couple hours in the NICU, the neonatologist came and talked to us about Jack’s abdominal scan. It was confirmed that everything was perfect, that he was choking on fluid from being in the womb and could not breathe. His echocardiogram came back normal, like a typical newborn. Some children with Down syndrome are born with congenital heart defects.  Jack was a healthy newborn with an extra chromosome.

Diane was not our nurse. Diane was just coming to say hello. Diane met me the day before because she saw I was in labor. I talked to her for 10 minutes, and now she saved my baby’s life. This was not by chance; I believe she was an angel. How I am thankful my parents taught us to be personable, acknowledge others, make a new friend and realize God can speak to you through others even when you aren’t expecting it. I believe God taught me something really big that day never to underestimate when and where God can show up… and that I need to get more pedicures!

So who are you going to acknowledge today that you might not have taken the time to before?

Follow this journey on Jack’s Basket.

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