To the Dads of Children With Autism, From a Fellow Dad

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I put my son on the school bus today. He was excited and happy because he enjoys the bus ride to school. The bus pulled up and I walked with him up the driveway and to the bus door. I told him goodbye and after a little prompting, I received a goodbye in return. He boarded the bus and the bus pulled down the street to turn around. I waited at the end of the driveway and waved to my son as the bus went by (I did this more for myself than for him). He did not wave back. 

I am the father of an autistic child. My wife and I have three children: our oldest son is 11 years old, our middle son is 8 years old and our baby girl is 9 months old. Our middle son was diagnosed as autistic when he was 2. As luck would have it, my wife taught as an early childhood special education teacher for several years prior to our son’s diagnosis. She is patient, understanding, caring and loving. The same cannot be said for me. I was quick tempered; impatient and high-strung doesn’t begin to cover it. However, after eight years and counting and through good times and hardship, our family is getting by. 

This is a father’s perspective on autism. I’ve typically maintained silence or vagueness regarding my thoughts and feelings on my son’s autism. I think there are a lot of fathers like me in similar situations. We were raised to be the backbone of the family. We think we should not show doubt or fear, so we bury those feelings and only expose them to our spouses (if at all). Typically we don’t even talk to our friends or family about our concerns because, unless you have an autistic child, you simply cannot understand exactly what it’s like. I don’t mean to imply that friends and family don’t care, only that they may lack the true understanding of the situation. I’ve seen the judgmental eyes of family or friends that seemed to say, “Yes, their child is autistic, but there is no excuse for that kind of behavior. It has to be upbringing or lack of discipline,” or “I cannot believe that child can’t use the bathroom, dress themselves, be quiet, etc.” Once again, this is not out of malice, but misunderstanding. Also, as much as my friends want to be helpful on the subject, guys’ advice is usually oversimplified: “Keep your head up,” “It’ll be all right,” “Rub some dirt on it,” just to name a few suggestions. 

For all these reasons and more, I’m writing this to let other fathers of autistic children know they’re not alone. I know some of your fears and worries. 

I believe I know how you felt when you heard the diagnosis. Maybe you had to hold back tears and be strong. I might know your first concerns, too: Will they ever talk or be able to express themselves? Will they be potty-trained or dress themselves? Will they understand danger or dangerous situations? Will they have friends, and the most heartbreaking, will they understand how much their family loves them? As your child grows and you begin to see answers to your initial worries (that can be good news or bad), adolescence quickly approaches and new questions take hold. Will they ever get to drive a car, play a sport, go out on a date, get a job, live on their own, fall in love, get married and have their own child?

I know you love your children and wouldn’t trade them for the world. I know when people tell you, “Have hope, have faith, pray and God will give you the answers,” that doesn’t console you when you’re changing an 8-year-old’s diaper, stopping them from hitting themselves or watching them cry, unable to tell you what’s wrong. I know what it feels like to be pessimistic. I know and understand the weight on your heart.

I also know you’ll never give up on your child. I know you will fight harder (more therapy, more activities, more time together, more understanding). You will do everything you can think of because you love your child. Then through all the heartache and worry, I know you are rewarded. Every time that child smiles, it will be that much brighter. Every hug you get will be that much tighter. Every time they laugh, it seems that much louder. 

I believe there are no little victories with autism. Every step forward, every improvement no matter how slight is a huge accomplishment — not just for your child but also for you. Children with autism do not have an easy road, but they need their parents to get down it.

I did not write this for pity or praise. I’m writing to tell all fathers out there — I know how you feel. I’m one of you. I’m sympathetic and respectful of you. You are not alone. I believe we all feel the same things. Don’t let those feelings own you. Love your children; they will give you hope. Love your spouse; they will give you love in return. Love your family and friends; they will give you support even when you don’t realize you need it.

Sincerely,

A Dad

P.S. To all the mothers of autistic children, please don’t take offense to this letter. I certainly do not mean to imply you don’t have the same thoughts, feelings and concerns. I could not do anything without my wife. She is the reason I have made it this far. I simply wrote this from a father’s perspective because I think men are less vocal on this subject, and I wanted to give a voice no matter how small.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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8 Things People Searching for a Diagnosis Want You to Know

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It’s warm today, and Erin’s resting on her beach chair. The sun warms her face as she quietly hums the song playing on her headphones. The beach is noisy today, but she’s trying hard on focus on this relaxing moment. She concentrates on the cool air that wisps across her toes, and despite the noise, she drifts slowly off to sleep.

“We’re done,” cuts in a voice that interrupts her music and startles her awake.

“Thank goodness,” she sighs as she begins to move forward and out of the MRI machine. Her daydream was over. She felt fortunate to have drawn her focus away from that confined and noisy space. But a feeling of disappointment came over her. She wished her moment away wasn’t just a dream. In fact, the last few months for her have been like living in a nightmare.

A few months ago she began to feel sick. She was tired, her body ached and she felt like she was coming down with the flu. She took a couple days off work, and when it was time to return, she still didn’t feel better. The weekend passed, and she still couldn’t shake what she thought was the flu or some sort of virus. She returned to work and held strong, hoping her symptoms would improve, but they never did. The symptoms and the addition of widespread pain was beginning to disrupt her life. She couldn’t concentrate at work, and by the time she got home, the extreme fatigue and pain kept her from keeping up with her normal responsibilities at home. Deep in her heart she knew something wasn’t right.

It began to slide into every aspect of her life, and she knew she needed answers. She was disappointed to learn that when she went looking for answers, she’d only end up with more questions.

“So, what’s wrong with you?” she would be asked.

“I don’t know.”

“What do you mean you don’t know? Didn’t you just have an MRI?”

“I did but they couldn’t find anything,” she said, feeling defeated.

“All that money spent for nothing?” Her heart sank hearing those words. She had hoped others would see her quality of life would be worth the investment.

The time and money she invested in searching for an answer was only feeding her increasing guilt, but she kept reminding herself of why she was searching. She often had to keep going even when she felt like the doctors had also given up.

No one wants a diagnosis, but everyone deserves a chance for treatment and hope for a better quality of life. Those living in the gray area between health and a diagnosis are lost. They’re always searching, researching and asking questions. They’re often seeing various specialists and submitting themselves to tests that can consume time and strain finances. Their symptoms aren’t in their head. They’re like Erin in my story. She’s an intelligent, loving mother of two who works for a living. She is active in the lives of her children, but she also knows something with her health isn’t right.

But the woman my story could also have been my own mom who searched for 55 years before receiving a diagnosis. The woman could also have been me. I knew something wasn’t right with my own health for more than 10 years. After various doctors’ appointments, tests and questions, I found my own diagnosis after plenty of research. My diagnosis finally came after I asked my physician, “Could you please test my blood for rheumatoid arthritis?”

People searching for a diagnosis want you to know:

1. I do need answers.

2. I need support and understanding.

3. I need help.

4. Do not judge me.

5. Don’t ask me questions about my search and then cut me down.

6. Please don’t offer alternative healing until I have a diagnosis.

7. Don’t tell me it’s all in my head.

8. Listen to me.

As for Erin, she’s going to keep searching because she needs answers so she can have hope for a better future, for herself and for her children. She desperately desires the chance to experience life without the disruptive symptoms attached to an unknown diagnosis. She deserves to get up each day and know what she’s facing. She deserves a chance for a fair fight. She and all people living in the gray zone of the undiagnosed want and deserve the same.

Danielle Myers the mighty.2-001

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This Chart Proves Just How Small 4% of Something Really Is

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About 10,380 children under the age of 15 in the United States will be diagnosed with cancer in 2015, according to Cancer.org. Cancer is the second leading cause of death in children after accidents.

Despite this, of the $4.9 billion 2014 National Cancer Institute (NCI) budget, only 4 percent went to research around childhood cancer, according to the Coalition Against Childhood Cancer (CAC2).

To put that in perspective, this is what 4 percent of something looks like:


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According to Vickie Buenger, President of the Coalition Against Childhood Cancer (CAC2), the number itself isn’t the only problem.

“Anytime we start talking about childhood cancer, it is appreciably different from adult cancer,” Buenger told The Mighty. “The causes of the cancers are different, the way they act in the body is different and the treatments for adults may or may not be helpful in children’s cancer because they are affected by different kinds of cancer.”

Because of this, treatment options for children with cancer are often limited and sometimes outdated. Buenger’s own daughter, Erin, who diagnosed with neuroblastoma and passed away in 2009, was at one point taking a medicine that Buenger’s grandmother took as a treatment for breast cancer in the 1970s. Buenger says her daughter spent close to three years of treatment on drugs that were developed in the 1950s and 1960s.

“We were happy to have those drugs because they kept her alive. I don’t want to complain that we had those drugs,” Buenger told The Mighty. “I’m just saying there have only been four or five drugs developed specifically for children.”

Since 1980, only three drugs have been approved in the first instance for use in children, and only four additional new drugs have been approved for use by both adults and children, according to the Coalition Against Childhood Cancers.

This in part has to do with how cancer research is funded.

“The funding picture is incredibly different for adult and children cancers, the difference is that for adult cancers, except for the rarest, there’s also going to be efforts being made not just through federal dollars but also through pharmaceutical companies running clinical trials and trying to do development,” Buenger told The Mighty. “They are using corporate dollars as well as the federal dollars; more than half an annual budget is still being spent by the private sector. In childhood cancer, that is just not true.”

Because children are often diagnosed with rare diseases and the profit pot for pharmaceutical companies developing a drug for a pediatric cancer patient is limited, most of the breakthroughs come from the funding given to childhood cancers by the NCI — the 4 percent.

This means that not only are childhood cancers getting a small portion of federal funding, but they are more dependent on this small portion because developing cures for children’s diseases is seen as less profitable than cures for adults. The financial motivation to develop drugs for children just isn’t there.

“It’s not a matter of raising the [4 percent] number or even doubling it, although that would be nice,” Buenger told The Mighty. “It’s about thinking as a community… My goal as an advocate is making sure children have all kinds of reasons to be a priority so we dont think of them as second-class citizens and we don’t give them 50-year-old medicine. We need to incentivize private industry to think about developing drugs for kids and we need to be a higher priority at the NCI.”

Childhood cancer advocates argue that pediatric cancer should be a higher priority both because other cancers have private funding options and because children have more years of productive life following diagnosis.

“I don’t want to play cancer olympics where we say children are worth more or adults are worth more because I think we’re all affected by cancer,” Buenger told The Mighty. “The 4 percent is the starting point to a question that really has to do with priority for children to take advantage of the great science going on in the United States… We can do better as a nation than we’re doing.”

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How a Mall Carousel Makes a Difference for My Son With Special Needs

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A double-decker carousel in the middle of a shopping mall is probably on my son Nick’s top five list of best things in the world. Walking around a mall while Mom cycles through her favorite admonitions — “Dont touch that,” “Ssshhh!” and “No we can’t buy that today” — is probably on his top five worst things in the world list. So, you can see the stark contrast between the two is like an oasis in the middle of a sandy, hot and annoying desert.

That would be enough reason to return to this particular shopping mall whenever we visit our family in Florida. But there’s more: This carousel has a policy that anyone with special needs can ride free whenever they want for unlimited times. Their caregiver gets to ride for free, too. That seems like a really small thing in a life of really big issues. But it’s huge! Why? The carousel costs a couple of bucks. If I’m about to drop five on my ritual Starbucks latte, then the carousel certainly fits in my budget. But it’s priceless!

Melanie Gomez the mighty.3-001

I don’t know the motivation behind this generous gift, and I don’t know why all other carousels don’t offer this same perk, but I promise you it’s huge! The owners of this carousel don’t know me or my 15-year-old son with a rare genetic disorder. They don’t know on some days I have to shop for something and need to take him with me. We both dread the entire experience. They probably don’t realize that a carousel is unique among all the other mall amusements because his 6-foot-tall body can actually fit on this kiddie ride. I want them to know they’ve provided an oasis in the middle of the mall for both of us; it shuts down my crabby and turns on his joy!

I’m writing this post to publicly thank the generous people who have such a policy. If you know of one, please send them this post! I want the carousel owners to know that not having to pay for the ride several times in a row is a priceless experience for my family. It’s not really the money. It’s the VIP treatment that makes the difference.

When we’re at any other mall, I usually give in and dig through my purse to come up with the fare. But somehow when that’s not part of the equation, it’s so much better. I also usually regret paying for the carousel at other malls because I end up spending the next hour saying, “No, we cant do it again,” about a hundred times. In this case, I let him spin until he can’t spin anymore, and we both go on with our shopping refreshed and renewed.   

I’m also hoping other business owners out there might read this and think, “Hey, that would be pretty easy for me to do with my (insert cool thing that kids of all abilities enjoy here).” This isn’t the only time I’ve run into this policy, but it’s certainly rare. One other time, Nick was given unlimited pony rides at a fair while he was with his grandma. She recounted the story to me with tears in her eyes and told me how much it meant to her, Nick and the sweet old man who operated the pony rides. Joy all around. It’s so simple to make someone’s day. Thank you to everyone out there who spreads the joy, especially to the double-decker carousel owners at the mall.

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To the Parents of a Child Who Has Depression

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Dear mothers and fathers,

You did nothing wrong. Depression is not your fault. Your child’s depression is not your fault. It’s the darkness that overtakes them, you and your family.

You did nothing wrong.

There’s something you don’t understand right now. You can’t connect how your sweet, loving daughter or once varsity athlete son is suddenly alone, crying, angry, sleeping or self-harming. They have the perfect life, you think to yourself. But depression is not about what we have or don’t have. Depression is deeper than the money in the bank or the roof over our heads. Depression is the deeply seeded component to our lives that we cannot control with a credit card or praise.

Depression is not your fault.

You did nothing wrong.

I want to grab you by your shoulders and shake some sense into you. This is not about you, I promise. This isn’t because you didn’t love enough or give enough. This isn’t because you work, or don’t work or didn’t go to Disney World. It’s not because you said no to those shorts that were a bit too short. This isn’t because of you. This isn’t your fault. You did nothing wrong.

Now is the time your child needs you to be the parent. The time you need to find them that help. They will fight you, even when they’re really crying out for you. Even from behind dead eyes you think hold no emotion, they’re crying.

I hate you.

They will say it. Your flesh and blood. Your child who knows the difference between right and wrong. Love and hate. They might tell you they hate you. And it will feel true. Right now, it might be. But you did nothing wrong. You are saving your child’s life. You are saving your own. That is your heart, slowing walking outside your body, dying, reaching for you.

This is your time to parent and their time to child. Just for today, you need to adult. Don’t worry about tomorrow yet. Today is here and now. And adulting is hard. It’s more than waking up and putting your feet in your shoes. It’s not going to be easy. But this isn’t your fault. Depression isn’t your fault. You did nothing wrong.

If you’re reading this, I want you to know I’ve been there too. I wanted to die. I hated my mom.

But she saved me.

And I will save you from the thought that you cannot do this. You can. You did nothing wrong and you’re doing so much right. There is help and love and light. There. Is. Light.

You did nothing wrong.

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Follow this journey on A Is For Adelaide.

 

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How We Can Make the World More Inclusive for People With Disabilities

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According to the World Health Organization, there are more than one billion people living with some form of disability, making up the largest minority in the world, according to United Nations Enable. Disability has always been a natural part of the human condition. There have always been people with disabilities and there always will be. But I believe the greatest obstacle for these people and their families is not the actual disability itself — it’s the outdated attitudes, false stereotypes and segregation surrounding disability in general. There is only one thing that comes from the way our society perceives people with disabilities, and that is fear. Fear comes from ignorance and unawareness, and it’s manifested in our society’s perceptions and views of people with disabilities. Nothing is wrong with people who have a disability. These amazing individuals are not broken; I believe our society is broken.

When our son, Hudson, was born we only had a few moments with him until we heard the words gently escape our sweet labor and delivery nurse: “They think your son might have Down syndrome.” We stood by his NICU crib as he underwent major surgeries and fought to survive. We spent many days and nights in hospitals during his first years of life.

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One cold, scary February night, we almost lost him. He stopped breathing after his second GI surgery, and his heart rate plummeted. I stood in the hospital room and felt like my whole world was crashing down. All we ever wanted was to bring our baby home and love him. As we have seen time and time again, Hudson is resilient and a fighter. He overcame all the health obstacles, and he did come home with us. He is an extraordinary miracle.

All the things we never expected or could have imagined would happen turned out to be the most beautiful, perspective-building and life-changing moments in our lives.

Our greatest hope for Hudson is that people will see him for who he is and not the label of his disability. Hudson was perfectly and wonderfully made. He has a bright future with unlimited potential. Our fear is that people will exclude him because he has Down syndrome. History points to the fact that people with disabilities have often been underestimated, mistreated and not valued in our society. Society has made progress and is continually moving in the right direction, but we still have more work to do. We’re still missing the boat in many of our schools, workplaces and communities.

Inclusion is an attitude — one that embraces and accepts every individual, regardless of any and all differences, as a valuable member of a family, classroom, church, playground, office, recreational group, community and society. In our schools and in other situations, inclusion involves providing proper support and services so a child can be successful in a regular education environment. This would mean bringing special-education services, such as an aide, speech therapy, occupational therapy, curriculum modifications, etc., to the child in a regular education classroom versus taking the child out of the regular education environment and moving them to a separate classroom to receive services.

A recent draft of a policy statement by the U.S. Department of Education says that “a robust body of literature indicates that meaningful inclusion is beneficial to children with and without disabilities across a variety of developmental domains.” Here are some benefits that I think come with an inclusive education environment: better social skills, meaningful friendships, increased appreciation and acceptance of diversity, respect for all people, opportunities to master activities through observation and teaching others, increased school staff and community collaboration, higher expectations for everyone and increased opportunity for inclusion in future environments.

Inclusion needs to start at birth and continue throughout our children’s education. I don’t believe children benefit from being labeled, tested and placed in a separate classroom. What message does that send to kids with disabilities, their peers and society? That people with disabilities don’t belong with their peers? We know that’s not true. Children with disabilities can thrive when they are included with typical peers. They might need extra support in place for inclusion to be successful, but I think it will certainly have astronomical benefits for everyone involved.

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Children model themselves after other children, and they rise to challenges and opportunities presented. We see this through Hudson’s placement in a typical preschool setting, which has encouraged his speech and other skills because he’s able to model and observe his typically developing peers. If kids can grow up with a person with Down syndrome in their regular classes, they might be more likely to practice inclusion throughout their lives and have a better appreciation for people with disabilities.

Segregation is a cycle that we must break. We can’t let our kids go to school and grow up without understanding and accepting that disability is a natural part of life, and there is no reason to be scared or feel sorry for people with disabilities. Children and people who have no experiences with people with disabilities can sometimes misunderstand or fear those disabilities. Wouldn’t it be a beautiful thing if we all had a friend with a disability who we had the opportunity to learn from starting at an early age? People are all more alike than different.

We want Hudson and other people with disabilities in our community to feel loved, respected, valued and to be contributing members of society. Hudson makes the world a better place just by existing in it with his smile, laughter and love for life. We should want all of our kids to be exposed to people of all abilities because it’s the real representation of life.

As human beings, we all have a completely unique genetic makeup that exists in each one of us. It’s the same thing as saying, “I have blue eyes and you have brown” or “You’re tall and she’s short.” Would you treat someone differently because they had a different hair color? No. Then why would we treat someone differently because they have an extra chromosome?

As humans, we have a tendency to group people based on a diagnosis or disability. “People with Down syndrome do this” or “People with these diagnoses do that.” Nine times out of 10, those assumptions are wrong. People are people. They’re all different. Every individual with Down syndrome is not the same. They each have their own hopes and dreams and are all unique.

Many people with Down syndrome and other diagnoses go to college, get their driver’s license, get married, work full-time jobs, volunteer in their communities and live independently. One of the biggest assets for those with a disability who are able to live a more independent and self-sufficient life is inclusion with the support of family, friends and their community. When people feel valued, respected and a part of their community, there are no limits.

How can we make the world a better place for people living with a disability and for people without? How can we be a more inclusive world? It’s simple.

Take the time to get to know those in your community who have a disability or a family who has a child with a disability. Ask questions. When you see someone with a disability, say hello and spark a conversation. If your kids ask questions, answer them openly and honestly. Invite the little girl with Down syndrome to your child’s birthday party. If you are a business owner or employee, consider hiring or advocating for a person with a disability to work in your office. I promise you that your work environment will be a better place because of it. Stop using the R-word and tell others to stop using it. Tell the parents who just received a prenatal diagnosis or a diagnosis at birth, “Congratulations!” And don’t say, “I’m sorry,” because why should you be sorry? Use person-first language: a person who has Down syndrome instead of a “Downs person.” If you are a business owner, consider asking a person with a disability to be pictured in your marketing campaign — the largest minority in the world should be represented in the media, which has the power to present a real representation of our world.

If these were things everyone did on a regular basis, our world would be a better and more inclusive place for people with and without disabilities. When our perceptions and attitudes change, our actions follow. Every step toward a more inclusive world is a step toward a better world. We can make the change. We can make the difference.

The message that we — in our schools, workplace and communities — need to be sending to people with disabilities is: We see you for who you are. We respect and appreciate you. You are your own unique person. We want to include you. There are no limits for what you can do.

Inclusion and acceptance can change our world and make it a better place for everyone in it.

Rachel Bachus Heinz the mighty.3-001

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