When the Director At My Son’s Special Needs Camp Called Him an Inconvenience

There are times a child with autism may not fit in, even at a camp for children with special needs. It seems ridiculous, but it’s true.

When you’re in the heat of the moment, it’s hard to see or focus on anything but what’s happening right then and there. But hours, days, weeks and even years later, you can look back with some perspective and maybe even a little laugh.

Looking back now, I still feel the sting of the words. But I can also see and understand the ridiculousness of what happened.

I can laugh at the absurdity of the situation.

It’s sometimes hard to find where you fit in — typical or special, high or low, wherever you find yourself and your child. That elusive place where you are supposed to fit and want to fit can be hard to find. But we try.

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My son, Cooper, attended a summer camp for children with special needs one year. It was a reputable camp run by a therapist and parent of a child with autism. Cooper also went there for therapy, so he was not a stranger to them. He was new to the camp, though.

On the last day of camp, there was a “fun day” planned. The director and staff were excited about the inflatable slide and water games. It sounded like fun, and I truthfully thought he would enjoy or at least participate in parts of it.

Unfortunately, when I arrived that afternoon to pick him up, I was met by an upset camp director. Pointing her finger in my face and gesturing to all the other kids around, she informed me that my child, my son with autism and sensory issues attending her camp for children with special needs, was the only one out of all the children there who did not go down the slide.

Apparently, that was a problem.

She proceeded to tell me how even the child with this issue or that issue went down the slide. I was told Cooper refused repeatedly and eventually threw a fit and had to go inside. I was informed of how inconvenient that was for her and for the staff.

I stood there, stunned, apologizing for his behavior and telling her I really thought he would like it.

I left there crushed, heartbroken, angry and cussing a little bit.

I can look back now and see how absurd it was. This person who should have known better — who has probably fussed, complained and fought against the very thing she instinctively did herself — refused to accommodate and work with the needs of the child. She even went to the point of blaming the child.

It’s a difficult pattern to break. As much as we focus on correcting it, it will occasionally rear its ugly head.

It’s OK that Cooper didn’t go down the slide. I know that now, and I knew that then.

I don’t share this story for sympathy. I am sharing it to help everyone understand that sometimes we are judged and have a hard time fitting in, even in our own communities.

It will take a village working together for true change to occur and for it to become instinctive to bend and work with the child.

Autism awareness, acceptance and action begins with me. And you.

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The Moment My Dad Taught Me Not to Be Ashamed of Disability

My father was born with hearing loss. In elementary school he was seated in the back of the class with a box that supposedly amplified sound so he could hear better. As many of you know, putting the child with hearing loss in the back of the class is possibly the worst idea ever. He spent years being pulled out to go to speech therapy while in elementary school. They even tried an experimental radiation treatment on my dad to cure his hearing problems.

Sometimes as a kid, he would sit on the curb of the street and wonder why he was born with a disability and wished it would go away.

I was fortunate to be born to a father who had these experiences.

When I was 2 years old I began showing signs of a central auditory processing disorder in the form of being a “late talker.” In third grade I was diagnosed with learning disabilities. Around the same time I began to stutter, which, like learning disabilities, is neurological in nature. I had a really difficult time in school and it wore on my self-worth and view of who I was and what I had to offer to the world.

Unlike many children with disabilities, I was born into a family where I wasn’t “special.” I was normal. My working middle-class parents already had a blueprint for understanding disability which was, “It is something you have so you deal with it.”

My parents showed me that the teachers who didn’t always accommodate me or instill self-esteem were full of pooh-pooh (trying to keep this clean for a family website). Above all, my dad knew what it felt like to feel isolated and he even still validates how difficult it was for me as a kid and relates to it personally. Because of his own experience as a child, my father knew what it took to have a child with disabilities.

My grandfather, who wasn’t necessarily warmest guy in the world, drove my dad over 40 miles in a 1949 Oldsmobile to get him the best possible assistance for his hearing loss. Between my own father’s day job and his night job doing janitorial work, he would drive me 40 miles to see my favorite speech therapist, Elaine. Of course he took the opportunity to nap in the waiting room, but he was there with me. Once, after waking him up, Elaine said, “You know, Jerry (my dad’s name), there are other speech therapists closer to you.” He replied “Yeah, but Nina likes you.”

My dad showed me having a disability was just another aspect of life and there wasn’t anything to be embarrassed about. When I was in the sixth grade he coached my Catholic Youth Organization girls’ softball team (see video for story).  He announced to the girls, “I’m deaf and you’re just going to have to speak up when you are talking to me.”

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Horrified he would talk about this in the open, I waited for the girls to laugh. Then, I realized they completely didn’t care. He wasn’t ashamed of his own disability, nor was he ashamed of mine. Now when I do stand up comedy or public speaking, one of the first things I convey to people is, “I stutter, and you’re just going to have to wait patiently for all my brilliant ideas.” This is a direct result of my father being my role model.

I realize not all you dads of kids with disabilities are lucky enough to have a disability yourself, but you can still model the pride, courage and hope my dad did. You will mess up sometimes and you will lose it. My family likes to laugh at the time when my father was teaching my brother how to use drafting tools and he threw an eraser across the room in frustration. What is more important than perfection is being authentic in your relationship with your child, with or without disabilities, and instilling the values you want your child to believe about themselves.

There are going to be peers, teachers and passersby who will make them feel badly about themselves. This means it’s your job to protect them and make them feel both special and normal simultaneously.

For all the dads who tell the jerks at the next table “What are you looking at?” when their child stimming away, happy Father’s Day!

For all the dads who bring us to our favorite fast food restaurant after whatever kind of therapy we have to go to, thank you!

For all the dads of kids with disabilities who coach our football teams to make sure a “wannabe Bill Belichick” isn’t undoing all the work you and your family have done, we love you!

We may not always be able to express it, but you have given us strength.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. 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 to Know About the Recently Introduced Mental Health Care Bill

Rep. Tim Murphy (R-Pa.) introduced a new version of his Helping Families In Mental Health Crisis Act to Congress last Thursday, and it contains compromises aimed at appeasing critics while keeping changes that should please his initial supporters.

I’ve read the 173-page bill twice and have asked for reactions from the top lobbyist of National Alliance on Mental Illness (NAMI), Mental Health America, the Treatment Advocacy Center, the Bazelon Center For Mental Health Law and the National Disabilities Rights Network. I also exchanged emails with DJ Jaffe at MentalIllnessPolicy.org, who testified before Murphy’s subcommittee and has been one of Murphy’s strongest backers. Jaffe was especially helpful in explaining parts of the bill to me.

Here’s a quick analysis of what Murphy, along with Rep. Eddie Bernice Johnson (D-Tx.), have reintroduced. You can also read the bill on your own here.

1. More doctors — and less lawyers — will guide mental health spending.

The new bill will move responsibility for mental health care and funding under an Assistant Secretary for Mental Health and Substance Abuse Treatment within the Department of Health and Human Services. It would require the new secretary be a medical doctor (psychiatrist) or Ph.D. psychologist with practical experience. One of Murphy’s complaints about the Substance Abuse and Mental Health Services Administration (SAMHSA), which currently distributes mental health care funding, is that an attorney, not a mental health expert, runs it.

2. There would be stricter funding criteria for mental health and addiction programs. 

The new bill would tighten funding criteria for mental health programs funded by federal block grants to states. Critics have accused SAMHSA of paying for frivolous programs. Money could only be spent on programs recognized as “evidence-based practices,” as opposed to ones that are popular but not backed by credible evidence.

3. States would be rewarded for implementing Assisted Outpatient Treatment laws.

Under this new bill, states that implement Assisted Outpatient Treatment (AOT) laws will be rewarded with a 2 percent increase in their general mental health/substance abuse funding from the government, but no state would be required to adopt AOT statutes. Under AOT, as it’s known, states can require persons with a diagnosed mental illness to take anti-psychotic medication if that medication has proven to help him/her in the past and he/she has a documented history of violence or repeated hospitalizations.

4. It would make crucial information more accessible to parents and caregivers.

The new bill would modify the Health Insurance Portability and Accountability Act (HIPAA), which deals with patients’ rights to health information privacy, so caregivers, including parents, could obtain information about a loved one who’s hospitalized because of a mental disorder, even if the patient doesn’t want information shared. While it’s important to safeguard privacy, HIPAA has been used in the past to prevent parents from helping someone they love. But the HIPAA modifications would also restrict what information could be shared, whom it could be shared with and when it could be shared. Diagnoses, treatment plans and information about medications — but not personal psychotherapy notes — could be released to a caregiver when it was deemed in the patient’s best interest.

5. Medicaid and Medicare would be accepted at larger inpatient facilities.

Current federal law imposes a 16-bed limit for inpatient beds. This limit was designed to prevent states from re-opening large hospital warehouses. The government then refused to allow Medicare and Medicaid payments to larger-than-16-bed facilities. Murphy’s bill would repeal the exclusion of Institutions for Mental Disease (IMDs), which have more than 16 beds, as long as a facility kept patients less than 30 days. 

6. It would limit the powers of a national advocacy program for individuals with mental illness.

One big change in the bill deals with limiting powers of advocates under the Protection and Advocacy for Individuals with Mental Illness Act (PAIMI programs.) The federal government funds Protection and Advocacy agencies in each state to safeguard the rights of persons with mental illnesses and disabilities. The new bill would limit the powers of PAIMI advocates by restricting their authority. They would only be permitted to investigate cases of abuse and neglect and would be specifically banned from lobbying public officials and from “counseling an individual with a serious mental illness who lacks insight into their condition on refusing medical treatment or acting against the wishes of such individual’s caregiver.” That sentence is aimed at William Bruce situations, where a PAIMI advocate told Joe Bruce’s son, William, what to say to be discharged, even though his medical team considered him unstable. William was released and murdered his mother.

7. If you use Medicare, you will no longer have a lifelong limit of 190-psychiatric hospitalization days.  

Murphy adopted a provision from the Democrats’ bill introduced last session to bottleneck his legislation, which would eliminate the 190-day lifetime limit on inpatient psychiatric hospitalizations in Medicare.

8. It would set standards for who qualifies as a “peer” in “peer-to-peer” programs. 

Murphy encourages funding and support for peer-to-peer programs, but his bill would set standards for peers and require a professional mental health practitioner to monitor their work.

Of course, the bill consists of a lot more, including funding programs to prevent suicide among school-age children.

Would this bill effect you or your family? Comment below with your thoughts.

A version of this post originally appeared on Pete Earley’s website.

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An Illness Took Me on an Unexpected Detour, but I Embraced It

I’ve spent a lot of time waiting in my life. As a kid, I grew antsy with impatience, waiting until I was older to start dating, to go to the mall unsupervised and to learn how to drive. I counted down the days until I turned 18, giddy at the idea of college and independence at last.

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But two weeks after I turned 18, waiting took on an entirely new meaning. An unforeseen blood clot caused my body to go into septic shock, and my life changed forever. Now it was my devoted family who had to wait patiently and lovingly while I recovered from a three-month coma.

When I awoke, I had to wait many months before I could take a breath of outside air once again. I had to wait eight more months before I was discharged from the ICU. Three years passed before I could drink a sip of water or eat a morsel of food again. And it took 27 surgeries before my doctors could create a makeshift digestive system for me.

I became extremely well-versed in patience.

But I also learned something far better. Even though my life as I knew it was shattered, I could reassemble the pieces together differently, but beautifully like a mosaic. These imperfect shards of a life I longed to reclaim could create a work of art of even greater impact.

A decade has passed since my life took an unexpected detour. It was a messy detour that put most of my life plans on hold. But this detour also turned out to be the richest time in my life. To this day, I’m still healing physically and emotionally. Every morning, I make a new attempt to find who I am and to discover who I am becoming.

If I had waited for life to be perfect or at least for life to go back to how it was, I would have missed out on so many things. I would have never mounted my first solo art show after learning to paint in the hospital. I would have never written a one-woman musical about my life that I’ve performed for three years. And best of all, if I hadn’t had the audacity to set up an online dating profile for myself while still in my hospital gown, on IVs and recovering from a disastrous surgery, I would never be marrying the love of my life next month.

They say that all good things come to those who wait. But why wait? Every day is an opportunity to learn, to grow and to better myself. I love the imperfect twists and turns my life has taken, simply because it has made me into who I am. Yes, it’s been a mess. But bit by bit, I’ve been reassembling my life — different, imperfect, but beautiful all the same.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. 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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5 Ways I Take Care of Myself as a Special Needs Parent

Parenting any child can be stressful, exhausting, heartbreaking frustrating, etc. When you parent a child with any type of special needs, it can feel downright overwhelming. My daughter, Lucy, is 5 and has Rett syndrome. She cannot walk, talk, use her hands or sit up well on her own. She has seizures, a feeding tube and anxiety. I’m her main caregiver while my husband goes to work, and I truly love it that way. I hate to be away from her. I love to be the one to make sure she is okay all day, and we have a great time together.

But… all of the physical, emotional and mental stressors of caring for such an involved individual, even if she is your heart and soul and the light of your life, can weigh you down. So here are five of my favorite ways to take care of myself and feel better.

These aren’t suggestions for how everyone should de-stress. Instead, consider this encouragement to find what makes you happy, and make it a priority to experience those things as often as you can.

1. I take time away from the house all by myself and I sing as loudly as I want in the car.

Even if I get away for an hour or two, which is all I really need, I feel refreshed. In the car, I can listen to the radio as loud as I want, roll the windows down and sing my face off. I usually just go to Goodwill or the grocery store, but if I can just be off-duty for two out of the 168 hours in a week, I feel so much better. Nobody needs me, nobody’s asking me questions or waiting for me to do something, and I’m just alone with myself. It’s a simple thing that makes a huge difference.

2. I schedule a monthly date day with my husband.

Once a month, my husband, Chad, and I go out for the day, just the two of us. Lucy stays with my parents, and our date begins around 10 in the morning so we’re always home for supper and putting Lu to bed. We always go out to lunch, which is my favorite part. And recently, we’ve been going to the movies more often, which is definitely Chad’s favorite part. We run errands or go to the farmer’s market. I look forward to it each month, just some quiet time with Chad. Of course, we still tend to talk mostly about Lu, but we talk about lots of other things too, and really just enjoy being alone together.

3. I make sure to exercise and eat right.

Every other night, I ride our conveniently small and fold-up exercise bike, and Chad rides it the other nights. On the nights I don’t ride the bike, I might go for a walk with my mom or use the Bowflex. I swim like a fish all summer long. Exercising makes me feel better and ensures I’ll stay healthy and strong to care for Lucy, which helps ease at least one worry I constantly have.

In addition to exercise, I put a lot of thought and energy into what we eat around here, trying to make as much as I can from scratch and preparing wholesome food for us. Luckily, cooking is also something I truly love, and that helps me relax. Overall, being healthier makes me feel great, plus I’m also not experiencing constant guilt and anxiety about what the future holds because I’m actively trying to improve my health… except for #4…

4. I eat snacks at night.

I know this goes completely against #4, especially because my favorite snacks are chips, but I try to keep it in check and not snack every night. I ‘m often heard saying, “At least they aren’t cigarettes,” as I’m a former passionate smoker. But sometimes, at the end of a particularly rough day, there’s just something comforting about sitting down to my favorite snack that I can eat uninterrupted and in peace. Silly, probably, but it helps.

5. I cuddle with my daughter.

Each day, Lucy and I tend to make time at some point in the morning and some point in the afternoon to retire to the couch and read and cuddle each other. Regardless of how many clothes I have to fold or dishes I need to clean, that cuddle time happens and it rejuvenates me. It relaxes her. And then we can continue on with the day. I always think about her needing that cuddle time, but I recently accepted that I need it just as badly. No matter what’s happening, no matter how crazy the day, sitting together and reading a little brings everything back into focus. We reconnect and say, “We can do this. Let’s get going.”

These five activities aren’t always foolproof. Sometimes I still feel stressed out. But I think just knowing what can make us feel better, and actually doing those things, goes a long way to maintaining our emotional health as special needs parents.

Once upon a time, I was “Julie Fye,” and then I got married and became Mrs. Julie Shaffer. But when our sweet Lucy was born, I became “Lucy’s mom” all day, every day. That’s who I am. And with the sheer amount of care involved in being Lucy’s mom, I can often forget that I’m anything else or that I ever was anyone else. Taking the time to remind myself that I matter, too, is an important part of this journey. Insisting that Chad and I spend a little time alone when we can reminds us that before we were Lucy’s parents, we were just a couple of kids in love. It keeps our marriage strong. Taking time to incorporate these little things into my life when I can keeps me strong.

Sometimes it might feel like we only have time to be parents, but a little time to ourselves — to relax and remember who we all are — can go a long way.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. 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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What I Forgot When Focusing on My Child With Down Syndrome Reaching Her Milestones

My daughter Adele is 22 months old and a fiery, spicy little girl.

Recently, Adele has really found herself. She is coming into her own. She is figuring out who she is, what works for her and how she fits in with our family. This is all within the past couple of months. Before this, I was focusing on the delays (although I claimed I was just taking it day by day) and how we could get Adele caught up, get her to where she needs to be. What I’ve recently realized is she is where she needs to be.

Up until this point, I’ve focused so much of my attention on Down syndrome and all it entails, that I’ve forgotten she is just a little girl.


She is content. She is still not crawling and she is not ready to start running around the house, but she is one verbal kid. She is able to express herself, sign what she needs and uses lots of “words” with her sister. She is not frustrated, nor are we. She is energetic and full of spirit, life and joy.

In these past two months, I’ve seen Adele transition from a baby to a little girl. Brinley and Adele play together, wrestle together and laugh together. They are playmates and I can see a beautiful friendship and bond forming between the two girls. I didn’t see this before because I was so focused on what we needed to get done, where we needed to be and how we would get there.

I’ve read the saying “I Am Not Down Syndrome” many times over and to be honest, it kind of bothered me. I didn’t think it was something we needed to shout from the rooftops. Why would we, as parents, put our child on display and tell others Down syndrome does not define them?

But alas, some of us need the reminder and it’s obvious I needed it. I think sometimes we shout all of these things to others, start up Facebook pages and write blogs because it’s us who feel the insecurities. I believe often we fear the diagnosis and feel if we yell at the world enough times it will make us feel better and more secure and comfortable with Down syndrome.

When we join the Facebook groups, we brag, ask questions and reassure others our world is how it should be, a beautiful and wonderful journey. We put on a happy face for others and tell them we are OK and everything is how it should be. Yet, behind closed doors, we cry and confide in our partner that we are scared.

As a specials needs parent, I am not looking to be put on a pedestal or given a hug each time you see me, but I want you to know it’s sometimes really hard. It’s sometimes overwhelming and you can fear the worst.

I don’t always need to be the strong parent, the one who shouts from the rooftops that I have it all together, that I am confident with all of my decisions and I feel OK when I think about Adele’s future.

I am not always sure.

I am not always OK with the diagnosis.

I am not always the best advocate for our children.

But I am trying and I feel blessed to be surrounded by an amazing group of moms who are going through a similar journey.

As I move forward, as Adele gets bigger and stronger and smarter, I am learning to face the day with love and patience. I am learning to accept things as they are and to allow my children to be who they need to be. I am confident Adele will be OK, but I also have moments where the worry takes over and I feel almost breathless and unable to cope with the thoughts about the future. It’s such a whirlwind of emotions, with amazing and beautiful moments combined with fear and worry.

This journey is about working together and supporting one another. We will celebrate together and offer words of encouragement and support along the way, but we will also cry on each other’s shoulders and share our fears and worries. I don’t want these moments to fly by. I don’t want my days to be focused on when we will hit our next milestone. I want to love the time I have with my two girls and feel reassured that this was the journey was given to me.

We will climb this mountain and when we reach the top, I’m going to sit down with the biggest rum and coke and celebrate. We’ve got this… most of the time.

It will all be OK.

A version of this post originally appeared on A Perfect Extra Chromosome

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to community@themighty.com. 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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