When My Son Asked, ‘Mommy, Do I Have Asperger’s?’

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I’ll never forget the day my son came out from his bath, wrapped in his Sesame Street towel, and asked, “Mommy, do I have Asperger’s?”

I was immediately filled with shock and relief. My husband wasn’t home and I knew this was a conversation we needed to have with him together. I scrambled for my words.  Knowing he was not going to stop asking until he got an answer, I still tried to prolong a response.

“Well, sweetie, I think we should wait for Dad,” I replied.

“But, Mom, I want to know what you think,” he said.

How could I look at him and not respond? This was during the time when we were still getting various diagnosis and weren’t 100 percent sure what was going on. I answered the best way I could.

“Honey, I really don’t know. How would it make you feel if you did?” I asked.

“Well, I would feel cool because my friend Roger* has it, and he’s cool. But I’d also feel sad that I would always be scared of things.”

My heart just about broke and at the same time was filled with love and gratitude that I had a child who could so beautifully express himself.

The conversations we were now able to have were so amazing. My husband and I have always been honest telling him that, like everyone, he has things to work on; that he has an amazing brain; and that we will never stop trying to get him the help and understanding he deserves. But now we were able to really dive into this with him, sharing our thoughts and getting a clearer picture of his.

Previously, I had struggled with what to tell him, and how to tell him. I felt like I was betraying him, lying to him. How could I tell him anything when even the doctors still had different opinions?

My son really wanted answers. His self-esteem was not great, a lot of “I’m stupid,” and the one that really kills me, “What’s wrong with my brain?” We told him there was nothing wrong with his brain and that he had many of the characteristics of Asperger’s, but we were still trying to get more answers.

Eventually we had enough information and we were able to tell him that he did in fact have Asperger’s. Not too long after, he was proudly telling people, “I’m on the autism spectrum; I have Asperger’s.” My boy had the answers he deserved. His self-acceptance inspired and continues to inspire me.

This post originally appeared on What Will This Day Bring?

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7 Tips for People With Special Needs Looking for a Job

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Embarking on a career search can be daunting, particularly if you’re a job applicant with special needs. Having a physical or intellectual disability can make tasks like developing a resume, filling out an application and preparing for an interview exceedingly difficult without support, and children with special needs don’t always have the same opportunities to develop job skills as do their typically-developing counterparts.

We wanted to learn what would help people with special needs find jobs more easily, so we reached out to some programs that specialize in assisting people with special needs find employment. The Mighty spoke with Keri Castaneda, Chief Program Officer of AbilityFirst, a program that offers a variety of services for people with varying intellectual and physical abilities in Pasadena, California. We also talked with Sarah Duplessis, the Program Director for Food for Good Thought in Columbus, Ohio. Food for Good Thought provides job training and support for people with autism and offers supported employment at its gluten-free bakery.

We asked Castaneda and Duplessis what they each wish people knew before beginning a job search or working with a job placement program. Here is what they had to say:

1. Parents, start preparing with your children early.

“It’s never too early to start preparing a teen for adulthood,” Castaneda told The Mighty. “This includes things like building communication and socializing skills and helping the child become independent and do things for his or herself.”

Early preparation also includes inspiring your son or daughter about what they want to be early in life. “A lot of times kids with disabilities are never asked what they want to be when they grow up,” Castaneda told The Mighty. “For so many of the people we serve, that has never even been brought up.”

2. Learn about services offered within your school district, community, county and state. 

Both AbilityFirst and Food for Good Thought are funded through state and federally-funded agencies like the Department of Rehabilitation and Medicaid. Castaneda and Duplessis each suggest that people with disabilities who are looking for jobs should look into other programs in their communities for financial support and other services.

“The more funding a person has, the more support we can provide,” Castaneda told The Mighty. “It’s important to understand what resources are out there in your school district and community. A lot of people take for granted that those resources are available.”

“A lot of parents come to us and don’t even know what’s out there,” Duplessis told The Mighty. “Options like the Bureau of Vocational Rehabilitation in Ohio are available in all states — you just have to know how to apply for services. Look into state and county board funding. Sometimes you can even get transportation to and from work.”

3. Don’t know what you want to do? Employment services can help.

“If someone comes to us who has never worked before, they go through an assessment period where we try and work with them on what they’re interested in, what their ability levels are and what kind of support networks they have. This is before we begin looking into job options,” Castaneda told The Mighty. “One of the things we consistently offer is moral support. It’s something a lot of people take for granted.

“Our first step when working with people who have never had jobs is a career exploration phase. Our clients take an interest inventory test and work with a job developer to come up with three to four careers or professions to explore,” Duplessis told The Mighty. “Then we find companies that are willing to talk to our clients about those tracks, and they go to informational interviews. Job seekers goes with list of questions that like, ‘What is your day like? What is the best part about your job? What is the worst part of your day?’ From there, they narrow down what it is they do or do not want to do.”

4. Job services don’t necessarily have agreements with employers to fill certain amount of spots.

“This is a common misconception people have about agencies like ours,” Duplessis told The Mighty. “We don’t have jobs lined up for people. Every case is its own case — every client has his or her individual job goal.”

“Another reason we don’t have jobs waiting for people is because we want to teach our clients the entire process,” she added. “We want them to leave with a resume so they can update it down the line and do it on their own. The interviewing skills they develop with us will stay with them as well. If they’re looking for a career change a year or two down the line, they’ll have those skills built in.”

5. There are programs that offer supported employment.

“It’s important to try and get people with disabilities active in the community, but sometimes people need ongoing support. For those people, supported employment is the way to go,” Duplessis told The Mighty. “Supported employment means consistent everyday support. Right now, we have 10 supported employees with a couple job coaches who are there with them every minute of every shift. These employees are independent, but the coaches help them continue to grow. Some stay in supported employment indefinitely; others look to eventually move on to more independent employment.”

6. Finding a job takes time.

“Many parents think their child will get a job within two weeks of working with us, and that’s not how it works. The process can take anywhere from one to six months,” Duplessis told The Mighty. “If one of our clients has never had a job before, we want to make sure he or she is developing the skills to find a job before we match him or her with employment. This can take time. We don’t set anyone up to fail, so having faith in an organization like ours is important.”

7. Some services will continue to support you after you’ve gotten a job.

“Once a client gets the job, depending on the type of funding he or she has, we can offer on-the-job coaching,” Castaneda told The Mighty. “We interface with employer — we’re not taking over the position of the employer, we’re just offering support. If, for example, there’s a new task someone has to learn or a new job duty, we can work with the employer on how to best work with that individual to master that skill.”

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Prom Photo Spreading Important Down Syndrome Message Goes Viral

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Mikenzy Snell and Matt Pliska became fast friends after they were paired up on a school field trip in fifth grade, WTNH News reported. Now, both juniors at Waupaca High School in Wisconsin, the pair have an important message to share with the world.

Pliska, who has Down syndrome, asked Snell to prom a year ago. She accepted, and the two recently attended the high school dance in style. A photo they snapped together that night, with both of them holding up a sign, has since gone viral.

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The sign reads “Real friends don’t count extra chromosomes,” and when WTNH News shared it on their Facebook page it was shared over 1,300 times.

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He’s such a positive person. He always has a smile on his face,” Snell told the outlet. “It really shows our friendship to the next level of where it actually is but people might not see behind closed doors.”

Get the full story in the video below:

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Taylor Swift Shares News of Mother’s Cancer Diagnosis

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Taylor Swift announced on Tumblr Thursday morning that her mother, Andrea, has been diagnosed with cancer.

Swift wrote:

I’d like to keep the details of her condition and treatment plans private, but she wanted you to know… She wanted you to know because your parents may be too busy juggling everything they’ve got going on to go to the doctor, and maybe you reminding them to go get checked for cancer could possibly lead to an early diagnosis and an easier battle… Or peace of mind in knowing that they’re healthy and there’s nothing to worry about. She wanted you to know why she may not be at as many shows this tour. She’s got an important battle to fight.

Read Swift’s full message here.

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via Instagram/taylorswift

Our thoughts are with the Swift family at this time.

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All of This Went Away When My Son First Said ‘I Love You’

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My 5-year-old son with autism said “I love you” today. Unprompted for the first time. Not as a repetitive response mimicking my own declaration (the norm) but on his own accord. My son said “I love you” today, and my entire world stopped. I paused in disbelief and inhaled sharply, painfully, quickly, as a rush of emotion overcame my entire being, tightening up, constricting my throat, choking me, burning my nose and chest. I closed my eyes as I pulled him against me, squeezing him, wrapping him up with every once of joy imaginable… and life was suddenly perfect.

Gone was the chaos and frustration of our day.

Gone was the look that woman gave me across the parking lot when my son slapped me hard in the face as he screamed and dropped to the ground, kicking at me, hands covering his ears to drown out the pain of the noise around him.

Gone was the memory of the policeman who came to reprimand me for not controlling my child in public.

Gone was the exhaustion of trying to do simple everyday morning errands while wondering what challenges we’d face this time.

Gone was the feeling that I wasn’t sure how I would make it through another hour without support.

Gone was the anger I felt when a task as easy as stopping to pick up a gallon of milk took it all out of me.

Gone was the hurt and sadness I felt for my son as I caught a glimpse of his sweet little face in the rearview mirror finally calm and smiling up at me.

All of it gone.

Because in that moment, we connected, and the universe reminded me of everything I’m grateful for. My light, my world, my heart, my son. I’m better now because of you.

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The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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.

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When Grief Over a Diagnosis Sneaks Up on You

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When we got the diagnosis in January, I’d felt a huge sense of relief. We finally had answers to our many questions. We were certain of what I’d felt in my heart for a long time — my son, Jackson had childhood apraxia of speech.

With diagnoses in hand, I set out to educate myself and others. I hit the ground running to make sure we were doing everything we possibly could for Jackson.

What I didn’t do was grieve.

Last week, the sadness and uncertainty nearly pulled me under. Somewhere between learning we needed to get an occupational therapy evaluation, realizing it’s highly likely that Jackson has sensory processing disorder and battling the school district to meet his needs, the grief found me.

So I fell apart in the shower. I let the water muffle the sound of my sobs.

At 2:00 a.m., silent tears hit my pillow. Jackson wasn’t feeling well, and it killed me that he couldn’t tell me what was wrong.

I sat in my car and cried in the parking lot outside the doctor’s office but quickly pulled myself together before my appointment. The doctor walked in and her first words were, “That little boy of yours is so lucky to have you as his mama!”

And I fell apart again — right there on the exam table — while my doctor hugged me.

Grief found me last week.

I grieved for the little boy who wants so desperately to talk.

I grieved because we have a long, hard road ahead.

I grieved because my 3-year-old should be signing up to play soccer or participating in activities with other kids.

I grieved because being the parent of a child with special needs is hard.

I grieved because few people truly understand what we face on a daily basis.

The week leading up to Easter was filled with tears and sadness. I was weary from worry. But then Sunday came, overflowing with hope, and these words comforted me:

Because he lives

I can face tomorrow

Because he lives

All fear is gone

Because I know

He holds the future

And life is worth the living

Just because he lives.

This apraxia journey is a roller coaster ride. There are days I feel strong and capable — Jackson’s biggest advocate. Other days I question my ability to get it right.

I never realized I’d be fighting so hard for my son when he was just 3 years old. I never imagined I’d be worried about IEPs and making sure people see him for who he truly is and not the labels they want to slap on him.

Yes, there are days I feel defeated and frustrated — but hope always lingers.

Oh, how I’m grateful for the joy discovered amidst the difficulties. Easter egg hunts. Texas bluebonnets. Ice cream for dinner.

I love this little boy entrusted to me.

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This post originally appeared on JenniferJacksonLinck.com.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about 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.

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