6 ‘Essentials’ No Parent Should Feel Guilty About Skipping

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Parenting is a hard gig — special needs or otherwise.

I went into this gig with outlandish expectations. If you follow any social media platform, you probably see many articles on child rearing or pictures of how things “should be done.”

I’ve learned that a lot of that stuff is a bust. Here’s a list of parenting “essentials” that I believe you shouldn’t feel guilty about skipping as a parent.

1. Expensive monthly, then yearly, professional pics of your kiddo.

We’ve all seen them. Although gorgeous and so memorable, can you imagine the cabbage that costs? I learned I could drape a nice blanket over my couch and get amazing baby shots of my son. I learned how to use the timer on my camera to get some pretty good family pics too. I learned that as he got older, getting him to sit and pose would prove to be a nightmare similar to entering a battle. I learned I can take some pretty good pics of him and get them printed for a quarter the cost and without much of a fight.

2. The fancy holiday outfit.

Each year my Facebook news feed is filled with people’s kidlets in their fancy holiday attire. If money is tight, why would I want to spend 30 bucks on an outfit my kid only wears once? Add in autism and good luck finding fancy schmancy clothes your kid can tolerate. I’m lucky to keep him in more than underpants when we’re at home. Getting him into dress clothes, has happened one time in his life. They were hand-me-downs, and it was a tee with a sweater vest. It stayed on him no more than 20 minutes.

3. A nightly three-course meal

Can you hear me laughing to myself over the mere thought of this one? I was raised with one meal with three or more food groups, and you ate it or you went hungry. Then came my son, Liam. Even my parents will admit this is a joke in my house. I often make two or three meals, never with more than two food groups. If I get Liam to eat two food groups in one sitting, I feel like I won the lottery.

 4. A sit down family meal at the dinner table

When you have a child who can’t tolerate various food smells, you quickly learn this is an unreal expectation. The alternative is vomit on your plate. Trust me, let them eat in a different room if that’s what they need to do. If we do sit down to eat together, it’s in the living room, at separate ends. But hey, we’re together. He’s happy, he’s eating, so it’s a win-win for me.

5. Eight to ten hours of sleep a night

OK, I may have peed a little laughing over this one. As a special needs mom, I learned I can function on little to no sleep. Thank God for coffee. My kid requires barely any sleep; therefore, I don’t get much either.

6. A “no co-sleeping” rule

Many people have varying opinions on this subject. Don’t listen to them. I was totally opposed to it from the beginning. And then I had a baby. A baby that was up every hour, on the hour. Feed, change, repeat. I don’t think I slept more than 20 minutes at a time for the first year of his life. No joke. He didn’t sleep through the night until he was a year old, and even then it was spotty. Add in night terrors. Add in a child with separation anxiety. We started co-sleeping so we could get some sleep. My son’s now 8. He sleeps in his own bed, next to my bed. Yes, you read that right. We share a room. It works for us. Special needs parenting is hardcore.

I could probably think of a ton more, but my child is demanding my attention. I know… how dare he? Bottom line — never feel like you have to do certain things as a parent. Do what you feel is right for you and your child.

Besides, half of us are winging it anyway.

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This Young Woman Captures What Depression Feels Like in a Beautiful and Heartbreaking Way

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This is a powerful and unflinching look at a very serious condition.

Sabrina Benaim, 26, is a spoken word poet from Toronto who struggles with depression and anxiety, according to her website. In the performance below, she spectacularly articulates what it feels like to live with these conditions and the frustration that comes from trying explain herself to others.

Watch Sabrina Benaim’s “Explaining My Depression to My Mother” at the 2014 National Poetry Slam in the video below:

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

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When I Started Eating Lunch With My Classmate With Down Syndrome

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Differences surround us. They can define us. They can hurt and separate, shape us and inspire us.

In fifth grade, the last thing most people want to be is different.

That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be over; he kept saying, “Bus, bus, bus.” I was unsure what to think at first, but I knew, much like me, Caleb wanted the day to be done. But that seemed to be where our similarities stopped. He was unlike most of the other fifth graders I knew.  

Caleb has Down syndrome.

He spent most of his time in a different classroom than the rest of the other students. He often sat in a different section of the cafeteria. He spoke differently; he acted differently.  

But our differences didn’t scare me. In fact, our differences brought us together.

Around this time, I became involved in the Adaptive P.E. program at school. The program was voluntary and allowed me to work with my peers with special needs. I definitely wanted to be a part of it. Not only did I enjoy the program, but I learned more about Caleb.

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Every day at lunch, I would sit with him. I thought this would be tough at first, because I was unsure how to interact because of our differences. But it was actually fun. After lunch, I would walk Caleb to P.E., and we would play together. We would bowl. We would dance. We would laugh.

And I began to look forward to spending time with him.

Others didn’t understand what was on Caleb’s plate, like I did. Others judged him. They looked at him with strange faces. They excluded him from activities.

One day, at recess, this all changed.

Caleb and I ventured outside to play soccer together. I assumed the game would only be the two of us. But much to my surprise, all of the other kids joined us. And this time, no one judged Caleb. No one made fun of him. No one left him out. It was Caleb’s soccer game, and I stood in amazement and happiness when I noticed the other kids give Caleb the ball and let him score. 

Caleb has taught me that it’s OK to be different. He’s reminded me to treat others the way I want to be treated. I know, without a doubt, he is out in the world somewhere, teaching others this same lesson.

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My Son Did Something Naughty… and My Heart Swelled With Joy

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IMG_6746 I’ve been to many parent/teacher conferences. I have three typically-developing children — well-behaved, high achievers. In these later years of their schooling, I’ve received a lot of forms with “No conference necessary at this time” checked off. In the early years I went in to confer with teachers, who, to my surprise, never wanted to talk about the sheer wonderfulness of my darlings. There was always a problem. Most of the time the problem was talking in class.

“I’ve tried him in every seat in the room,” my oldest’s first grade teacher complained in her beautiful Irish brogue. “Finally I put him in the back and he talked to himself!”

It was the same with my two daughters. All I could do was say how sorry I was that they were disrupting the class, promise to talk to them, and do so. Then I waited for maturity and the passage of time to do the real work. I myself was often written up as the chatterbox, my name chalked on Mrs. Turtur’s blackboard circa 1976.

Now I have a son in kindergarten who doesn’t talk — or walk or see. When I go in for a conference (and it’s always necessary) I already know we won’t be discussing his sheer wonderfulness. The life and education of a special needs child is a continual problem-solving process, and I’ve become a de facto member of the Child Study Team.

Last year I went in to meet with T’s TVI (Teacher of the Visually Impaired). They’d been working on nesting and stacking cups. T uses an adaptive activity chair with a tray in these sessions, and Miss R. told me when he grows frustrated with the activity, T pushes the cups off of his tray with a sweeping arm motion.

“But Mrs. V. [my son’s aide] has gotten very good at catching the cups in mid-air and putting them right back,” Miss R. assured me. “So… lately he’s started throwing them backwards over his shoulder, instead.”

We looked at each other for a moment, and then I burst out laughing. Miss R. did too.

“I know… it’s wonderful, isn’t it?” she said. “So typical for his age, so creative…”

“So naughty,” I filled in.

It’s so hard for T to make himself known as a person in the world. At home we know him well, but it’s hard sometimes for us to understand what he wants and needs. He has only a few signs and sounds he uses to communicate. He relies on others to move him around and bring him things. We make so many decisions for T, and many of them are guesses.

I never expected that my heart would swell with joy when I heard my little boy was doing something naughty. I went around bragging about it for days. He’d given me the gift not just of rebelling against something, but finding a new and better way to rebel when thwarted. Sometimes, when I worry, I take that memory out and picture Miss R.’s impression of T tossing a cup over his shoulder with determination and aplomb.

Naughty — but also very nice.

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The Holiday E-mail All Parents of Children With Special Needs Should Read

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Ah, the holidays…

They always end up being so hectic and stressful. Add a child with autism in the mix and things become even more chaotic. I wrote to our therapist about my daughter, Lila, and Christmas. The truth is, the gifts mean nothing to Lila. She couldn’t care less. Know what she wants for Christmas? Her balloons and ping pong balls and for Mommy and Daddy to be at home playing with her.

We all have these preconceived ideas about the holidays and what they should look like. Baking cookies with our children, watching their eyes light up while we explain Santa and the reindeer to them, listening to Christmas music, decorating the tree together, having a picture taken with Santa, looking at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree. And we don’t stress – we just enjoy the holiday season, right?

Is that really how it is for anyone? I have my doubts. You know… we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me we could flip the script on the holidays as well. Our SoonerStart therapist, Janet, sent me the following in an e-mail. I genuinely believe it’s something all parents of children with special needs should hear, so I wanted to share it with you:

There are so many social norms and expectations surrounding the holidays. It’s like there’s a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on…

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them… 🙂

So, please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe — they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!

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This post originally appeared on Dancing With Autism.

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