The Day I Told My Daughter Her Older Brother Has Autism


motherautism Ready or not, today was the day.

For almost seven years, I’ve pondered and prepared and waited for the subject to come up.

Autism.

She didn’t know it’s been a part of her life from the day she was born — even before that, since autism was the major consideration in planning whether or not we would conceive her. We’d reviewed statistics and debated. What if…?

Ultimately, we decided we could handle whatever life handed us. And here she is, asking The Questions.

The fact that it took her nearly seven years to ask about autism tells me that although this has been a natural part of her life, now she’s becoming more aware. Aware of the sign language and PECS symbols. Of the in home support staff. Of tagging along to the endless doctor visits. She’s understood since before she could crawl that she must never touch The Medicine. She now sees how our family is different from other families.

I must say, the build-up to this moment was significantly more grand in my mind’s eye than how the interaction, all two minutes of it, actually played out.

My daughter: Mom, why does my brother need you to help him so much? And why does he take medicine?

Me: His brain is different from other brains, and sometimes it doesn’t work exactly the way he needs it to work. The medicine helps with that. The way his brain works is called autism. He’s not the only one. Lots of people have autism.

Daughter: (without skipping a beat) It’s too bad we can’t go on The Magic School Bus and go inside his brain and make it work. Then he could talk. And he wouldn’t have to take medicine.

Me: Maybe sometimes he wants his brain to work like everyone else’s brain, but the autism also makes him special in a lot of ways. Like how he is really good at computers. And how he makes such amazing art.

Daughter: Yes. Maybe we could call The Justice League to have Batman go inside his head and give him a Brain Zap. He could zap it, and my brother could talk and not take medicine, but he wouldn’t zap the computer parts. Or the art parts.

Me: Hmmm… *debating a philosophical discussion with a 6-year-old*

Daughter: Can I have some chicken nuggets?

OK then.

That’s enough #‎AutismAwareness for one afternoon.

This post originally appeared on Mother Autism.

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6 Lessons I Learned From My Brother With Autism


1. Be grateful for everything that you are able to do.

My brother can do a lot of things, but he will never understand financial matters or the danger of walking into traffic or walking in a parking lot. He will never be able to brush his teeth on his own. He will never be able to speak. These are things that we all take for granted, but we shouldn’t.

2. Always thank people for what they do for you.

Every time after I cut his fingernails and toenails, he gives me a thank-you hug.

3. Take pleasure in the little things.

My brother’s face lights up when he puts the coins in the laundry, slides the slot in and       press starts.

4. Everyone has their own way of doing things.

My brother has his own way of doing things. When he washes dishes, he stands in a certain corner, even if you need to wash dishes, too. I used try to correct his way of doing things, but he resumes washing the dishes the way he wants to. That’s when I realized what he was trying to show me: there is no right way to do things; it is just your personal preference and how you choose to do them.

5. Don’t be afraid to show that you are sorry.

There are certain behaviors that my brother has no control over. After his meltdowns are over, he hugs my mother and me. I think that is his way to show us he is sorry.

6. No matter what life throws at you, you are stronger than you think.

For years, my brother has seizures. He would never want to remain lying on the floor afterward. He would always fight to get up. We would eventually concede and help him to do this, but it made me realize that my brother is one of the strongest people I know.

Luckily, with research, we have gotten his seizures under control, but I will never forget this lesson or all the other lessons that my brother has taught me so far and continues to teach me.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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 I Was Diagnosed With Multiple Sclerosis, I Had to Make This Decision


My story begins like many others. I was young and invisible, with the world at my feet when life threw me a curveball in the form of a multiple sclerosis (MS) diagnoses. Suddenly I was faced with a life-changing decision. Would I deny the diagnosis, try to muddle through life and cope the best I could, or would I choose to thrive? 

I was recently asked to give a TEDx Talk about my MS story and about how my diagnosis changed my life. Everyone has their own challenge in life, and everyone will be forced to decide whether to deny, cope or thrive. If you listen closely to my talk you’ll see I actually did all three. First I stubbornly refused to seek help, and I was in complete denial that anything could be wrong. Then I desperately tried to hold onto my identity as MS threatened to tear away everything I’d worked for. Finally, I let go, and I let myself thrive. Anyone who lives with a chronic illness knows this is not a one-time process. Every setback and every challenge can make it feel like we’re back at square one, but I constantly remind myself to make the choice to thrive.

I hope you enjoy my talk, and I’d like to thank you in advance for taking the time to watch.

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When a Stranger in the Shoe Store Made Me Cry


Raising a special needs child takes courage, patience, love and gratitude.

My son, who is 10, lost his hearing at 14-months-old. He received cochlear implants at 16 months and at 2 years old. He is now doing so well in school.

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Last month, my family and I were headed to a camp for kids with special needs in North Carolina and we decided to do some shopping beforehand. As we were looking around at the shoes, my son started begging my husband and I for an expensive pair of shoes. I proceeded to tell him that the shoes were too expensive right now, and he understood.

The very next moment a woman came up to my son and told him to give her the shoes he wanted. My son looked confused, but handed the shoes over. The lady took the shoes and purchased them for my son, as well as two packs of socks. My husband and I were overwhelmed from her kindness.

I told her that she didn’t have to buy the shoes for my son, and she proceeded to tell me, with tears in her eyes, that she knew first hand how financially and emotionally hard it is to raise a child with special needs. She had a 14-year-old daughter with autism.

There wasn’t a dry eye around us.

The kindness of a stranger can change everything and I believe there are some great people out there. Pay it forward, because you never know how a simple act of kindness can help someone. I will always be grateful for her kindness.

My son loves his shoes and knows a kind lady bought them.

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The Doctor Who Didn’t Describe My Baby as ‘Less Than’


There I was sitting in an exam room of the high risk OB-GYN office.

I had received the devastating news that something was terribly wrong with my pregnancy. Everything was a blur. Words like “termination” and “vegetive state” were being used.

Somehow I made it to the parking garage, where I plunked myself down on the filthy steps and burst into hot and fast-flowing tears.

What was I going to do?

How was I going to tell my husband?

Really, the question was, how I was I going to tell myself?

I needed answers and I needed them now, not weeks or months from today. Google was just not going to cut it. I got in my car and high-tailed it to the children’s hospital. They had doctors there, smart ones, who might have answers for me.

I wandered around the main area of the children’s hospital until I found a map and then I went to the neurology floor. I wanted to see if there was information, support groups, or some kind of guidance.

I needed something. Anything.

There I met a lovely lady with deep brown eyes. She asked if I had an appointment and I opened my mouth, but nothing came out. Then I started to cry. Again. This lovely lady handed me a box of tissues and I blurted out, “Something is wrong with my baby and they want me to abort.”

She picked up the phone and made a quick call. Luckily, it wasn’t to security to escort me out. She got up from her desk, took my hand and walked down a long hallway.

Just when I thought we had arrived we went through another set of doors and again down another long hallway. I went into an office with a small waiting area, and the lovely lady burst into the closed door and announced, “She needs to speak to you. Now.” She motioned for me to come in.

There he was, like the Wizard of Oz — the top neurologist in all of North America. He was sitting in a humble office in scrubs, talking on the phone with the operating room.

I sat down. I was awestruck that within a matter of minutes I was sitting before the man with the answers that people wait months to see. I believe this was no coincidence. I asked questions and he gave answers. I asked more questions and he gave more answers.

Me: What kind of quality of life will my baby have?

Oz: We judge quality of life based on our experience. Kids with traumatic brain disorders don’t see themselves as having “less than.” These people are the happiest, most content people in life. We (healthy/able people) are the ones who are miserable and who view lives as “less than.”

My jaw dropped. If there was any time to fall off a chair in utter shock, this was it. Our conversation was earth-shattering, mind-blowing and life-changing for me. It was exactly what I needed to hear.

I had been in the right place at the right time. I had waddled my hormonal, pregnant tush down the yellow brick road and barged into the office of one of the most successful neurologists in freakin’ North America.

At that moment, deep inside, I knew this was my path in life. Everything was going to be OK. Disability, disorder or disease — I knew I could do this.

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Why I Work Hard to Remember the Struggles of My Misdiagnosis


Do you ever think about who you may have been in a past life? This is a question that I ponder every night before I fall asleep. And unlike many people, I know the answer to this question.

In my previous life, I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped in her own body due to cerebral palsy. That child wasn’t able to dribble a ball down the basketball court, run around the school playground, hold a pencil with ease to complete daily homework or even use the restroom without the challenge of pulling her pants up and down.

When that girl grew into adulthood, the idea of marrying and having a family of her own didn’t seem possible, because she wondered who could possibly love someone who has so many physical challenges? Luckily, that girl was wrong and she married a wonderful man who was able to look past all of that and fall in love with the women she was on the inside. She would later be blessed with three children and their family would be complete.

It’s very hard for me to believe that the woman I just explained to you was indeed me.  That girl had struggles and challenges every single day of her life, yet here I am now, capable of so much more. Every day I do so many things that weren’t possible, such as:  walking my daughter to the bus stop, cooking dinner, vacuuming, driving the kids to all their after-school activities and so much more!

It amazes me that I’ve had this new life for five years now! I work so hard to remember the person I was before that doctor’s appointment on Good Friday 2010. I make sure to give thanks to the Lord for my new diagnosis of Dopa Responsive Dystonia (DRD) every single day. I also make a conscious effort to appreciate everything that I’m able to do and promise God that I will NEVER take any of it for granted, even on those ever-so-busy days where the stress begins to rise in my chest.

When I go to bed at night and think about who I was in my past life, I smile because I’m proud of who she was and pleased that she is making the most out of her current life…never taking anything for granted.

This post originally appeared on JeanAbbott.com.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]ghty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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