10 Things I Never Expected to Do as a Parent

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When I was pregnant with my first child back in 2006, there were things I expected to happen. I expected diapers, crying, toys everywhere, the occasional sniffles, the first day of school, family pictures, etc. I got that and so much more. The diagnoses of Down syndrome, AV canal heart defect, Wolff-Parkinson White syndrome, asthma, sleep apnea, GERD and a lung cyst all brought unexpected things to my parenting experience.

As I measured the bald spot on the back of my daughter Jaycee’s head last night to see if it was getting larger, I thought, “This is something I never expected to do as a parent!” And yes, if you are curious, it was a half centimeter larger than a few weeks ago.

Here are 10 other things I never expected to do as a parent:

1. Choose my daughter’s hairstyle based upon a BiPAP mask. If her hair gets too long, the mask doesn’t seal as well. Plus, the headgear makes wrinkles and uneven waves in her hair. That’s why short hair is the best style for her.

2. Leave a pharmacy with a bag full of medicines for my child every month.

3. Arrange my daughter’s furniture in her room based upon her medical equipment and outlet locations. Her bed has to be near an outlet for the BiPAP and nebulizer. Her chair must be close enough to another outlet for her airway clearance machine.

4. Wonder if my child was going to die. Yep, I never expected that one. But more than once, a bad news talk from a doctor left me wondering what was going to happen and praying Jaycee would live.

5. Buy diapers for nine years and counting for the same child. Thankfully, she just needs them at night.

6. Carry a bag with a change of clothes for my 9-year-old when we go out. Now her accidents are rare, but they can be expected if she’s in unique or stressing situation.

7. Perform so much speech therapy on my own child. As a speech-language pathologist, I never imagined using my training in language, apraxia of speech, and feeding treatments on my own child.

8. Interpret my child’s attempt at communicating with others for years. Around me, Jaycee uses many signs, gestures and some word approximations. I never imagined being an interpreter for my 9-year-old child, but I’m happy to do it.

9. Dread a phone call from my child’s teacher so much. Due to Jaycee’s breathing issues, I hate to see the school show up on my caller ID. Let’s face it, school professionals usually don’t call with good news, but I’m worried a call from them means Jaycee’s breathing is in trouble.

10. Be so proud of someone who doesn’t achieve the typical things. There’s no “My kid made the honor roll” celebration or a high-five because she made a sporting achievement. But I’m proud. I’m proud of her efforts. I’m proud of any attempts she makes. I’m proud of her Special Olympics competitions. I’m proud of her trying to write her name. I’m proud of her for saying her 15 words. I’m proud she can put soap in the dishwasher. Her small victories make me proud.

Maybe parenting Jaycee hasn’t been everything I expected. But, that doesn’t mean that it hasn’t been worthwhile and fulfilling. I like being Jaycee’s parent. Jaycee is always good for a hug and a kiss. She is the first one to notice if I have any kind of scratch or injury and responds by signing “mom hurt” followed by a soft kiss. When she is sad or upset, “mama” is the name she always calls, and that always makes me feel good. But beyond that, she’s expanded my parenting experience. I am capable of completing more odd tasks (like measuring a bald spot) and managing more intense emotions than I ever dreamed possible.

Follow this journey on A Special Purposed Life.

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The Perfect Thing My Boyfriend Said After I Told Him About My Mental Illness

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Before my boyfriend Skyler and I started dating close to two years ago, I had one annoying, persistent and anxiety-ridden question racing through my mind:

How the hell do I casually mention I have a diagnosed mental illness?

Growing up, I felt like society had groomed me to keep my mental illness to myself and “sweep it under the rug” — as if mental illness had its own unspoken “don’t ask, don’t tell” rule. But the longer Skyler and I talked, the more I realized it was becoming important for him to understand the part of me I sometimes couldn’t comprehend myself. Thinking about how to explain it gave me anxiety, considering I couldn’t predict his reaction. I was terrified of the rejection and judgment some of us are all too familiar with.

In the past, I’ve had some interesting experiences when disclosing my disability. Some immediately categorized me as “fragile”; others didn’t grasp how much mental illness can impact your life. They didn’t realize when I say depression, I’m not talking about feeling down about a bad test grade. I’m talking about the emotional equivalent to watching paint dry.

I remember a specific instance when Skyler took me to Chipotle for a date after I’d mentioned I’d never been. I almost sent myself into an anxiety attack while standing in line, inadvertently questioning every little thing. How does a fast-casual restaurant work? What do I do? What if they ask me a question and I can’t hear them? What if I accidentally drop my money without realizing and don’t realize it’s gone until I get to the register? What if my card doesn’t go through?

I struggled trying explain these things to him without receiving a judgmental response, but I knew in order to produce a successful relationship, I needed to share that part of me with him.

Recently I heard an interesting analogy I felt described me perfectly: “[Some mentally ill] individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

When I was finally ready to tell him everything, it’s like a lightbulb went off. He understood me so much better and was able to piece together things he had been confused about, like why I physically can’t get out of bed on random days, or how I overanalyze the smallest thing.

He responded exactly how I needed him to: “You’re not your mental illness, I still care for you just the same, and I’m not going anywhere.”

Realistically, if I kept my depression and anxiety to myself, it would’ve made our relationship more difficult for both of us. Relationships are built upon communication and honesty. For us, we have to do a little extra legwork, but together we’ve learned to adapt. In my opinion, the journey of self-discovery is never ending. I discover new things about myself every day, and having someone to share that with and someone who loves every anxious bone in my body is worth every bump in the road.

I realized opening up to Skyler challenged me to speak up for myself. When I can’t fight by myself, he’s been there every time. He stays in bed with me all day when I’m too depressed to move. He’s come over at 4 in the morning to hold me while I cry when I can’t comprehend why I feel the way I feel. We’ve discovered when I have an anxiety attack, giving me long, hard hugs almost “squeezes” the anxiety out of me. He’s shown me I’m worth loving and loves parts of me I had a hard time accepting about myself. It gives me hope.

In retrospect, reaching out to Skyler increased my ability to ask for help and disclose my mental illness — something I should’ve never been scared to do in the first place. My relationship is my safe space free from stigma, isolation and judgment, and for that I can never be thankful enough.

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Spend 5 Minutes in the Mind of Someone Who Has Schizophrenia

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For those who have never experienced mental illness, it can be hard to imagine being in the mind of someone who has. This is especially true for illnesses like schizophrenia, characterized by hallucinations, false beliefs and a lost sense of reality. But one campaign is encouraging others to get in the mind of someone with schizophrenia — if only for five minutes — to spread awareness and understanding of what it’s like to live with a severe mental illness.

Launched by Places for People, a center that provides services for those with mental illness in St. Louis, Missouri, the Hear Our Voices campaign provides an online simulation of auditory hallucinations, similar to what individuals living with schizophrenia experience. More than 50 percent of individuals Places for People serves are living with schizophrenia or schizoaffective disorder, according to its website.

The audio, called Mindstorm, is based on real experiences of those with schizophrenia.

Places for People suggests those who want to participate listen to the audio while doing everyday tasks like cooking dinner or walking to class. Then, participants are encouraged to share their experiences online using the hashtag #HearOurVoices.

According to its website, the goal of the campaign is to “reduce stigma around severe and persistent mental illness, specifically schizophrenia,” and “increase public empathy for individuals living with schizophrenia while providing education around the illness and other severe and persistent mental illnesses.”

If you’re interested in participating, you can listen to the audio here. If you or your family have a history of  mental illnesses or vertigo, you are advised not to participate in the stimulation.

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Debbie Reynolds to Receive Honorary Oscar for Her Work in Mental Health

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Debbie Reynolds will receive an Honorary Award at this year’s Governors Awards for her work in mental health, according to a Academy of Motion Picture Arts and Sciences press release.

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The Governors Awards is an annual event honoring people in the entertainment industry who are selected by the Academy’s board of governors. The Honorary Award, an Oscar statuette, is given to individuals in the entertainment industry for “extraordinary life achievement, exceptional contributions to the motion picture arts and sciences or outstanding service to the Academy,” according to the Academy’s website.

Reynolds, an iconic Hollywood actress and entertainer, was one of the founding members of The Thalians, a group formed by people in the entertainment industry in 1955 to raise awareness of reduce the stigma surrounding mental illness, according to the organization’s website. The “Singin’ in the Rain” star served as the group’s president almost continuously from 1957 through 2011 and served as chair of the board for additional terms, according to the Academy. Due in large part to Reynolds’s work, the Thalians were able to donate millions of dollars to the Mental Health Center at Cedars-Sinai and to Operation Mend, an organization at UCLA that works with veterans to recover from psychological injuries after returning from war.

Reynolds, now 83, will receive her award at the Academy’s 7th Annual Governors Awards on November 14, 2015. The other 2015 honorees are filmmaker and director Spike Lee for his work with young filmmakers and actress Gena Rowlands for her lifelong dedication to independent film, the Academy reported.

Read the Academy’s full press release here.

Feature photo via Wikimedia Commons.

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6 Things I Learned About My Son With Down Syndrome at the Waterpark

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It was our first visit to Kalahari, an indoor waterpark. I wasn’t sure what to expect or if the trip would be worthwhile. But it was because I had some true a-ha moments, and I never imagined that some of my most powerful insights regarding independence and raising a child would come during a trip to a waterpark.

Evan is 4 1/2 and has Down syndrome, and I’m sometimes guilty of hovering, worrying and what I call “over helping” him. Though I can’t say I’m through with my over helping, I can say that after this trip, I will encourage him to try more new things, even if I have a little bit of discomfort in doing so. This is, after all, a journey that our family is on together.

When I first arrived at the waterpark, I was thrilled there were so many areas for little kids. But when I looked around, I also saw a lot of things that scared me, areas within the kid areas that I thought were more advanced than Evan’s physical abilities. I wondered just how I would balance Evan’s enjoyment of the park with my ability to contain him in the areas I thought were safe. But the more time I spent in that waterpark, the more I started to understand my son, his abilities and what I needed to do to support his independence.

Here’s what I learned:

1. At first glance, a new environment can be daunting.

It was — for me, not for my son. He was comfortable immediately, and as I observed his comfort, my discomfort eased.

2. Shadow your child, but scale back your support as they outgrow their need for it.

During the first part of our first day at the waterpark, I followed Evan closely as he climbed the steps for the children’s waterpark slides and made sure someone was at the bottom waiting for him as he exited the slide. As we progressed through the day, I realized he didn’t need someone for the climb up and only needed someone to be at the bottom to help him if he got an unexpected mouth/nose full of water. I began letting him climb to the slides by himself.

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3. Encourage your child to try new things that require increasing skill levels.

The slides at the waterpark in the toddler area had different degrees of difficulty, and Evan often returned to the slides he was familiar with. As using those slides became second nature, I stepped outside my comfort zone a bit and pushed him to try slides with increasing difficulty. Most of the time, he did better than I expected.

4. A first-time failure should not preclude trying again.

One of the more advanced slides took Evan by surprise. He emerged backwards, went underwater, came up coughing and briefly cried. My first instinct was to redirect him somewhere I considered safe. I gave him a hug, and he looked at me and said, “Mommy, again.” When he came out the second time, he nailed it and didn’t take in water.

5. Making your own choices is a powerful confidence builder.

When I stopped hovering over my son, he climbed the stairs to the toddler water slides and delighted in making choices about the slides he wanted to ride. He would announce the color of the slide he chose to ride, and as he did so, he walked taller and was proud of himself.

6. Don’t let your first assessment be your permanent assessment.

When I first looked around the waterpark, I looked upon the park with trepidation. But throughout our two-day experience, Evan’s skills grew, and the features of the park that originally scared me were things that Evan mastered by the end of our brief stay. If I’d held to my original assessment, Evan likely would’ve only experienced two to three slides versus the 10 or so that he tried.

I learned so much during an overnight stay and two days in the waterpark, and I never expected our stay to provide such life lessons. I am forever grateful that we chose to go instead of foregoing the experience.

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Why I Lived Openly With Autism While Hiding My Schizophrenia

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Most people I knew when I was young expected me to die or spend the rest of life in institutions. I have a diagnosis of atypical schizophrenia and Aspergers syndrome, and had a very troubled early life which involved abuse, drug issues, bullying and self-destructive behavior.

But when I was 26 I decided to change my life. I started on a path which took me through Bachelor’s and Master’s degrees in visual art, publishing an autobiography and eventually landing an amazing job in the Australian public service.

As soon as I joined the public service my life changed completely. I moved in different social circles, bade farewell to my public housing estate neighbors and left a lot of the heavy load of life behind me. I learned about good food and “nice things.” However, there was a negative consequence in the mix, too. I could talk about my Aspergers diagnosis because I had written a book about it, but in my mind schizophrenia was another matter entirely.

I struggled to accept the schizophrenia label for a number of reasons. Firstly, the diagnosis came with an immense amount of negative stereotypes. People with schizophrenia were murderers and homeless people, according to the media. There was an autism self-advocacy movement, but I couldn’t find a corresponding one for schizophrenia. People with autism had a long list of positive role models, such as autism and animal rights advocate Professor Temple Grandin and amazing musician Ladyhawke, but the list was considerably shorter for schizophrenia. Even people who could be seen as role models, like mathematics genius John Nash (who inspired the movie “A Beautiful Mind), were very rarely described as having schizophrenia. Their diagnosis always seemed to be shrouded in mystery with just a little hint of shame. People with schizophrenia werent successful in the popular imagination.

It was almost impossible to feel proud of my mental health diagnosis with all of this weighing down on me. So I decided to hide that particular diagnostic label away, consigning it to a box in the garage and hoping I would never have contact with it ever again. I even stopped seeing my psychiatrist and instead got my medication from my general practitioner. Over time, I forgot I even had an illness. It was part of a distant and horrible life which I had no intention to revisit. But unfortunately, my schizophrenia didn’t forget me. Three years after I joined the ranks of the professional classes, I became incredibly unwell with psychosis.

I had not told anyone in my new world of my illness. I worried people would think I was dangerous or unreliable. But when I started to get unwell I had very little insight and believed all the delusional thoughts and hallucinations were real. Eventually — after many months of confusion and terror — I ended up in hospital. I felt scared to tell my manager about my diagnosis, but I had to in order to get time off of work.

My manager at the time was married to a staffer for a conservative politician. She always looked immaculate and I thought she would react badly to my predicament. But the opposite was true. She was beautiful about it from the very start. She was one of those amazing managers who care deeply for their staff members and all she had in mind was my welfare. I remember when she visited me I was completely addled and terrified I would behave inappropriately. She sat there quietly, telling me stories of people with similar circumstances she knew to put my mind at ease.

Over the next year or so, my manager became my strongest ally. One time I dragged myself into work only to realize that I couldnt stand to be there. I was terrified and didnt know what to do. I went straight to her office and told her how I was feeling. She dropped everything and drove me to my mental health clinic. I worried she would miss a meeting, but it was evident my welfare was much more important to her than any meeting.

With her care and kindness, my manager helped me overcome the episode of illness. If I hadnt opened up to her, I probably would have lost my job. While I thought I would somehow ruin my workplace with the taint of schizophrenia, the opposite was true. Now I’m able to tell my managers and colleagues about both my diagnoses and feel accepted. 

Follow this journey on Jeanette’s website.

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