I Wrote That Autism Isn’t a ‘Gift,’ and Comments Poured in. Here’s What Stuck With Me.

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As the feedback came in from my last post, “Please Don’t Tell Me Autism Is a Gift,” there was one critique with which I could not disagree. Some said that while they did not think autism was a gift, it had opened their eyes and made them appreciate the small things. It gave them perspective.

Am I saying I am thankful my son goes through everything he does so that I may come out the other side enlightened? No, absolutely not. I would not wish his challenges on anyone for any reason. I just wouldn’t. For me, autism is not a blessing or a curse — it just is what it is.

But just as I shared some of our struggles to give the outside world a peek into our daily lives, there is another aspect of this life I’d like to share to offer a more holistic view of our journey.

I would argue that we experience higher highs and lower lows as parents of children on the autism spectrum (or any children with special needs, for that matter). I can’t really describe to you the feeling when my 4 and a half-year-old used a spoon efficiently for the first time. Remember how excited you were when your 1-year-old first used a spoon? Now imagine how much more intense that excitement would be if you had waited four times that long to see it happen. Not only had you waited, but you and your child had worked tirelessly to make it happen. We worked with an occupational therapist to try to teach our son the coordination it takes to scoop up food and get it into his mouth without spilling it everywhere. We practiced at most meals even though he preferred finger foods. He often would not stabilize the bowl, and he would get frustrated when the bowl would push around on the table. As he raised the spoon to his mouth, he would always flip it and lose most of it. Then if any of it got on him, he would have a meltdown about something messy or wet touching his skin or even his clothes. I’m not going to lie — my heart soars every time I watch him eat independently, something I honestly took for granted with our oldest.

After so many hours of speech therapy and so much effort at home, listening to my son form a sentence is almost magical. There were so many times when he didn’t have the words. There have been so many heartbreaking instances when I would look into his eyes and feel like he was trapped inside himself. Hearing him convey his fears, express his needs, voice his feelings… in those moments, I couldn’t be more proud of something so many take for granted.

When we have a successful outing (even a 30-minute trip to the grocery store), I feel like I’ve just run and won a marathon. Do you know why I post about those good trips? Why I sing my son’s praises that he was able to handle the lights, the noise and the transitions? Because we had so many trips that ended with me in the car in tears. So many half-full shopping carts left in the aisles because I just couldn’t stand the judgmental stares anymore. So many trips have resulted in entire days of me trying to bring him down from the sensory overload. His tears, my tears, so many tears. So when we have an outing that doesn’t result in tears, you’re damn right I’m going to celebrate.

And the nights — I can’t really describe how hopeless I have felt during the bad nights. Not just nights when he was up and talking and I wanted to sleep. Not just the exhaustion. But some nights we had meltdowns, screaming, self injurious behaviors and even times when he would go after me. He wasn’t asleep, but he wasn’t awake, either — he was short circuiting and could not make sense of what his body was going through. During those nights that seemed to last forever, I have never felt more alone. Now, even though he never sleeps through the night, he only gets up once and usually goes back to sleep within an hour without incident. That might not sound like a good night to you, but I cannot even express how grateful I am for six hours of sleep and a night without him going through the trauma he used to.

Higher highs and lower lowers apply to our view of the future too. After receiving the diagnosis and the prognosis, I mourned for the life my son would not have. I don’t know if he will ever play a sport, live on his own, go to college, have a family or have a job. That is a heavy realization — one that continues to weigh on us everyday. But even during mourning there are glimpses of hope. With every little bit of progress with language, with each new skill mastered and with every academic achievement, my heart smiles and I am hopeful for the progress that lies ahead. Plus, having witnessed him so fearful, so miserable and so pained, simply seeing him happy on the good days is enough to bring me unmatched joy.

I know with a lot of hard work and resilience, the rest will fall into place, and we’ll be OK. Even if that OK looks different than I thought it would.

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This post originally appeared on From the Bowels of Motherhood.

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39 Ways to Know You’re a Parent

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1. During the first year, you smell like barf, even after you use a wet wipe.

2. You never go to the bathroom alone. You lock the door, you turn the lights off, they know where you are. They will find you. They will yell and bang on the door. They will stick their hands under the door and yell “MOM! MOM! MOM! MA! MA! MOMMY! MOMMY! MOM! MOM!!

3. You step on a Lego and swear. You step on a Hot Wheels car and swear. Giving birth to your children was less painful.

4. You lick your finger and wipe food off your child’s face.

5. You lick your finger to fix your child’s hair.

6. You lick your finger and wipe off your friends’ faces.

7. You fart in public and blame your child.

8. Makeout sessions with your spouse… what are makeout sessions?

9. You go out for dinner with friends, dig through your purse to find your wallet, but all you come up with is a pack of fruit snacks, diapers, wipes, a half eaten sucker and a rattle.

10. You wake up feeling hungover at least once a week, but you haven’t touched a drop of alcohol.

11. Your frequent Internet searches are: How to be a better parent in a week. How to keep your patience when you have none. How to compete with the “other” moms. How to lose 20 pounds in a week. How to stop eating your kids’ leftover food.

12. Your email junk folder is filled with diaper coupons instead of Viagra and vibrator links.

13. Your backseat is filled with juice boxes, crumbs and toys.

14. Your cell phone sits on the table when you go out for dinner with friends because you left the children with dad.

15. You say “just a minute” 50 times a day.

16. You spell out swear words to your friends.

17. You carry Smarties in your purse just in case you need to bribe your offspring.

18. Your back always hurts and your biceps are beautiful from lugging around children.

19. You use your children as an excuse so that you don’t have to go out.

20. Grocery shopping on your own is like going on a vacation.

21. You’ve heated up your coffee five times in an hour.

22. You can sniff out a dirty diaper like nobody’s business.

23. You wipe boogers with your bare hands.

24. You catch another child’s puke in your hands.

25. You hope that it was a raisin that your child just ate, but you aren’t too concerned, they need to build up their immune system.

26. You drive around the community for an extra hour because your children are napping. There is peace.

27. You say “Because I said so” and you don’t care.

28. You hear your mother in your own voice and realize that it’s not so bad.

29. You allow your toddler to wear pajama bottoms, a raincoat and a crown because you want to avoid a full-blown meltdown.

30. There’s a Happy Meal toy in your purse.

31. You don’t even flinch when you tell your child that they need to keep their clothes on in church.

32. You’ve put your cell phone in the fridge.

33. You say “oopsie daisy” and you aren’t even embarrassed.

34. You need to plan out when you can shave your legs.

35. You know “Goodnight Moon” by heart.

36. Three-second rule… that’s a bunch of nonsense.

37. Quiet children = a whole lot of trouble!

38. You cut your spouse’s food into bite-sized pieces.

39. You have never felt a love so overwhelming and beautiful and perfect.

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

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The Memory That Became Precious to Me After My Friend’s Death

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I was 38 weeks pregnant, a pumpkin with a head, achy, tired and moving slowly. I sat at my desk in my office looking at the piles of work and realizing that I no longer had the energy or brain power to focus. I waddled into my supervisor’s office.

“Sylvia, I think I need to start my leave.”

Sylvia* was a tall redhead, brilliant and kind. Her smile said that she knew this request was coming, even though I had told her earlier that I was going to wait one more week. She didn’t hesitate. “You bet,” she said, and finalized the paperwork. My leave started the next day and I was relieved. She was a good supervisor.

One November Saturday, Sylvia asked me to meet her for coffee. She loved coffee, never to be seen without a cup in her hand and I was happy to take a break from my toddler son. We sat outside Starbucks trying to enjoy the last vestiges of warm before winter started in earnest, holding our coffees closely.

“I have decided to leave my job. It is time for me to move on,” she told me. She was going to take a job in another country, one that offered a chance for growth and new challenges. I understood her decision, her need to move her career forward.

I also knew that I would miss her. Over the years we had grown to be friends, not just colleagues, and it wasn’t like she was going to be across town when she left.

The day of her departure drew near. Her office was emptied, diplomas, awards and certificates carefully boxed. I was on the road at a conference, looking forward to a farewell party in a couple of days, when I got a call. Sylvia had been in Starbucks ordering a coffee when she stopped being able to talk.

She was rushed to the hospital, where they discovered a mass in her brain the size of a fist. It was brain cancer, a horribly aggressive brain cancer.

“Don’t look it up online,” my friend Marla told me. “It is terrifying.”

But doctors were optimistic. She was young and healthy and an ideal candidate for new treatments. And they worked! Six months later, doctors declared her cancer-free. She started working again.

We attended a conference in Washington, D.C. a month later. My son was old enough to appreciate the trip, so we decided to make it a family vacation as well. He got to see the dinosaurs at the Natural History Museum and the view from the Washington Monument.  He stood in awe at the gigantic yet gentle statue of Lincoln in the Lincoln Memorial and we read the Gettysburg Address together.

On our last night there, Marla, Sylvia, my family and other friends had dinner together in Georgetown. As we walked back to our hotel afterwards, my husband and I took up the rear watching those walking ahead of us. Sylvia was chatting away with my son, the Navigator, holding his hand, and he looked up at her adoringly as they walked.

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Photo source: Thinkstock Images

I remember feeling how blessed we were. Months before, we thought we were going to lose her and here she was holding my son’s hand. I was so grateful that she was there with him, with us.

A few months later, she completed her plans to start her new job and moved away. We kept in touch as much as we could, juggling our jobs and our lives.

It was a year after that night in Georgetown when Marla called me. “Sylvia had a stroke.” The cancer was back. This time it was inoperable. It was just a matter of time.

Sylvia passed away almost four years ago. I still miss her. I miss her laugh and her wit and her brilliance. That memory of her laughing with my son has become exceedingly precious, like a beautiful gem.

I am even more grateful now that he had a chance to hold her hand.

This is what my son told me to say for him for Sylvia’s memorial:

“Dear Sylvia, Thank you for playing with me and carrying me in Washington, D.C. I will miss you. I know that God has made you at home in heaven.”

*The names in this story have been changed.

This post originally appeared on Autism-Mom.

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What It Feels Like to Live With Chronic Fatigue

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Many people have asked me what having chronic fatigue syndrome (CFS) is like or what it feels like. Sometimes, they just presume what it’s like. Sometimes people assume I must feel tired all the time and just need more sleep. However, honestly, this is far from the truth.

Deep below the relatively “normal” person you may see in front of you is a real tiredness that is so much more than you could ever imagine. Today, if you will come with me, I am going to take you on a journey through your own experiences and hope that in just a small way, it will give you a further peek into life of just one person with CFS.

I would say I want you to close your eyes and imagine, but if you do that you can’t read what I am saying. So, with your eyes wide open, take a moment to think about the times in your life when you have been the most tired.

Was it after a night when your child woke every 45 minutes without fail?

Was it the morning after an all-nighter to get a university assignment done and dusted?

Was it after a sleepover at a friend’s house when you were a teenager?

Was it after running your first half marathon, Tough Mudder or Spartan race?

Was it the evening after sitting a whole day examination?

Was it after a week of teaching a new kindergarten class, when you just got home and collapsed on the couch?

Take yourself to that time. How did you feel? Yes, you were tired, but what did tired feel like? Were you walking around in autopilot, just going through the motions of what you needed to do? Brushing your teeth and eating your breakfast (probably in that order) without the energy to lift the food or the brush to your mouth, but knowing you needed to do it? Were you eating for the sake of eating, even though you weren’t hungry and the thought of food made you nauseous? Was there a dull headache that just persisted throughout the day?

Was it not quite trusting your judgement and second-guessing yourself as you drove into university to drop the assignment off? Did you make a wrong turn on a trip you had done hundreds of times? Did it feel like your spatial awareness was kind of off as you bumped into chairs or people as you walked down the sidewalk?

Was it the feeling of being highly sensitive to any noise, smell or to the person who said or did the smallest thing wrong? Did you find yourself snapping or crying with no real reason, as those things that wouldn’t have normally annoyed or upset you became major stressors?

Was it the feeling of adrenaline after the race? The surge of breathlessness, the dizziness, the muscles beginning to cramp, the deep exhaustion slowly beginning to overtake your body as the adrenaline wore off and the pain began?

Were you completely and utterly brain dead after sitting the exam? Did you struggle to add up the correct change for the train trip home? Did people ask you what you had done that day, and all you could do was stare at them blankly?

Or were you collapsed on the couch unable to contemplate lifting your arms to reach the glass of wine on the coffee table? Did you get a deep feeling of heavy limbs that even a glass of wine after a long week can’t remove?

Fatigue is more than just tiredness.

It encompasses emotional, cognitive and physical factors. It encompasses all of your life. The combined description of the feeling of tired above would be the baseline, the everyday, for someone with chronic fatigue syndrome. It’s as if the brain has switched a switch and recreated a new normal.

A new normal where mental clarity, spatial awareness, physical wellbeing and emotional stability are out the window.

A new normal where you can feel out of breath and dizzy whilst lying in bed. A new normal where your limbs now weigh a ton.

A new normal where your body is in pain constantly. A new normal where you wished you just felt tired or that a good night’s sleep would make a difference.

This is what being tired (fatigued) means to a person with CFS.

But I have hope, a hope that is bigger than how I feel. A hope that sustains me each and every day: I lie down and sleep; I wake again, because the Lord sustains me (Psalm 3:5).

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Please Note: I have people hesitant to tell me they are tired or they are shattered after a long night, and then follow it up with, “But not as tired as you must be,” as if somehow they have no right to complain or be tired. Could I please let you know I have the upmost empathy for anyone who is tired for any reason? Please don’t feel like you are complaining, because being tired is exhausting.

A version of this originally appeared on Make It, Bake It, Fake It.

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The Lesson My Mother Taught Me After Her Death

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I love to celebrate motherhood. Every single day. Isn’t it amazing? Aren’t our mothers just so strong and resilient and beautiful?

I’m never quite sure how to feel about the official Mother’s Day. You know, because some of us aren’t mothers. Or maybe we’re mothers who lost a child. Or children who lost our mothers. But we all have mothers or did at some point. There’s always that.

This story is about my mother.

She’s gone now. But she lived once. She was a beautiful Italian woman with long dark hair and brown eyes. She had strong tan arms and painted scenes of barns and cemeteries and cornfields. Before dying, she held me in those arms and told me I was the wonderful, beautiful girl she always dreamed I would be.

That wasn’t so long ago. I miss her so much.

In life, my mother was a nurse to the dying. She often worked the night shift and would bring me a toasted blueberry bagel with cream cheese on Saturday mornings as I sat watching cartoons. She always told interesting stories about her work. So-and-so had died that night, she’d say, and what a beautiful thing it was.

The deaths she witnessed were spiritual, tragic, often joyful, sometimes angry. Her stories would make you a believer. She wanted to believe.

My mother taught me many things in life – she taught me not to pick my nose or cheat at board games. She taught me to cook and sew and give handmade greeting cards. She taught me the meaning of unconditional love.

But she taught me the most valuable lesson after her death.

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She passed away on a Friday morning in October four years ago. Outside, piles of gold and red leaves covered the sidewalks. The sky was blue; the air was crisp and cold. Inside, she lay drowning in fear and discomfort. Her lungs paralyzed, her faith wavering. A woman sat at the foot of her bed, reading aloud from the Holy Bible. I held my mother’s hand. “What if this is all there is?” she’d said a few weeks ago, her voice weak and horse. Each word was a struggle. She’d spent too many painstaking words that day telling me she’d realized it was easier to live when she was sleeping. Life was only hard when she was awake.

As she lay dying, her eyes connected with mine. I kissed her forehead.

“This isn’t all there is,” I whispered. “I promise there’s more. Right now you have one foot in this world and one foot in the next. All you have to do is lift that foot and step over. I promise it will be there. Just let go…”

When the dying take their final breaths, shallow gasps punctuate long periods of silence. The living hold their breath for a moment, too, wondering if that gasp will be the last. And then a sigh of relief as the wait begins again. As I listened and waited, my inner eye perceived a vivid ball of light over my mother’s right shoulder. It radiated joy and peace, confirmation that the next world had been there for her. She was gone. It was done.

Minutes later, a nurse quietly jotted down the time.

I didn’t cry. I felt like I should, but the tears wouldn’t come. Everyone grieves differently, I suppose. I grieved while listening to Duane Allman’s “Goin’ Down Slow” on repeat, staring at our bedroom wall. I didn’t like to come home so I shopped for new clothes and wooden train track sets for the boys and other things we didn’t really need. I remember one afternoon begging my husband to build train tracks with me on our living room floor. I took great comfort in avoidance, distraction, denial.

The first few years after my mother died, I dreamed almost nightly that we were having lunch or sipping Dunkin Donuts coffee or cooking dinner or making soaps. Every night we melted glycerin and carefully poured it into the molds. We popped in another videotape, a comedy this time. We laughed and talked about things happening in my life. “Have you ever heard of Ghost pepper?” I asked her one night as I dreamed. “Marcus says it’s the hottest pepper in the whole world.” We tried it, and it wasn’t that bad. Can you believe that? Every night she was healthy again, in remission from a disease that in reality always kills. ALS. Every night in my dreams, she beat the odds.

Only last year, in deep meditation at a craniosacral therapy workshop, did it finally dawn on me that my mother is gone. Like gone gone. Why this realization came more than three years after her death, I don’t know. Maybe that’s how denial works. But as I entered the vast spaciousness of meditation that day, the truth came booming out of nowhere. A sudden, awful shock. I think it was meant to come gently, but it felt like a train crash. I grieved hard that day. I cried loudly and messily. I ran out of tissues and started on the toilet paper. It felt out of place and liberating to grieve after that much time. It was a good thing.

Since that day, she’s only visited me a few times in my dreams and never as the woman she once was. One night, I dreamed we were debating what it means when people say that life is a journey, not a destination. “What is that supposed to mean anyway?” I said to her in my dream. “I always took it to mean that you should stop to smell the roses and all that.”

But my mother responded that to journey means to surrender. To surrender the desire to win, to be perfect, to be the fastest or the best. “If we’re all floating in a sea of emotion,” she said, “then to journey through life means to feel all of those emotions without denying yourself the experience that each one brings. To feel pain, regret, doubt, love, joy and remorse all at once and to learn from them. To feel elated about your child’s faltering first steps in the same moment you feel heartbroken about your mother’s faltering final steps. To let yourself bob along in the gentle sea of life with trust instead of fear. To be. Only then can you reach your destination.”

“The journey matters,” I heard her say before I woke up.

Don’t deny yourself the journey.

Happy journeying.

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This post originally appeared on Team Bunz.

The Mighty is asking its readers the following: Describe a memory with a loved one that you didn’t realize meant so much to you until they passed away. 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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What I Wish I Could’ve Experienced With My Little Brother

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To my dear daughter, Jillian,

I write this letter as you are about to turn 4 and a half years old. You are an amazingly spunky, fun and smart little girl who recently became a big sister. And boy, are you rockin this new role that has been handed to you.

The way you care for Jude is evident in the way you do just about everything with and for him. But it’s obvious how amazing you are when you see the way he smiles and looks at you when he sees you, each and every time.

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You and I have a lot in common, more than you realize at this time. I, too, became a big sister when I was your age, to a beautiful baby brother. A little boy who grew into the most amazing and courageous young man, whom you never had the pleasure of meeting. He was taken from you also, way too soon.

We missed out on a lot of things in life, your uncle and I. He never had the chance to roll over to me and pull my hair the way Jude does with you. He never grabbed my toys or threw things at me, he never chased me around the table, spilled milk on my art project, ate the last cookie or dated my best friend. He never hugged me, kissed me, or even said my name. No matter how much he wanted to. Or how hard he tried.

So I ask you, my sweet daughter, to keep a few things in mind.

Wherever life takes you, be Jude’s big sister. Let him be your little brother. Let him chase you, and be thankful that he can walk. Let him call you 1,000 times, and be thankful that he can speak. Let him steal your old book reports, and be thankful that he gets to go to the same school as his very smart older sister. Laugh together, cry together, let him eat the last cookie. And when you can, eat the last cookie yourself.

It’s the little things that I never had with my brother that I think I miss the most. Sadly I’m not even sure if that’s true, since I was never given the chance to experience any of them.

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I promise you will miss him pestering you one day. And I pray that I’m around long enough to see that day. It won’t always be easy, but you’ll always have each other. Cherish that. It’s an opportunity I would give anything for, even to this very day.

Love with all my heart,
Your mommy, a fellow big sister who, like you, was blessed with the most amazing little brother in the world

P.S.: Yes, by the time you read this, I would’ve written a letter to Jude as well, reminding him to cherish his older sister.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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