“Put your mask on first, then help the child.”

By Jill Wilbur Smith

I hate seeing my daughters in pain. It’s possibly the most difficult aspect of being a mother. Seeing my children in pain and being unable to do anything to fix it. That’s the ultimate definition of helplessness for me. And for someone who craves order, who loves to always be in control, that’s excruciating.

When my children or husband are in difficult situations, I often jump in with both feet and try to redirect some of the pain towards myself. I try to absorb their pain, thinking it will ease their burden. Of course it rarely does. Then I feel helpless and in pain myself. And exhausted. And frustrated. And did I say helpless?

So I give up things that I would normally do for myself and devote all of my time and energy to them. Then I get resentful. Then I feel guilty. Then I’m exhausted. Which leads to helplessness. Wait. Did I already say that?

I’m going to try to stop doing that. I don’t know if I can. But I’m going to try.

I think about my own life. I can’t think of a single time in my life that I made it through a difficult situation because I let someone else claim my pain as their own. It doesn’t work that way. No one can really take away your pain. You have to simply feel bad until you don’t feel bad anymore.

Of course you can listen. You can make soup or offer a hot beverage. You can perform random acts of kindness. You can hold the tissue box and rub a back while the person in pain cries. But their pain will always be their pain. Not yours.

A few months ago, I saw a therapist. I told her it was because I didn’t want to feel left out. But really I just felt a little at a breaking point. I’ve tried to absorb so much of the pain of my family that I felt overburdened. She gave me some good advice.

“You know when you’re on an airplane,” she said, “and the flight attendants go through their safety spiel. They say ‘In the unlikely event that the oxygen masks deploy, be sure to put your mask on first before trying to assist others.’ That’s what you need to do. You need to make sure you’re wearing your own mask before you can help others.”

She’s right. I need to take care of myself so I can be there to care for others. I need to make sure the oxygen is flowing freely to my lungs so that I can be healthy and energized for those around me who need me.

For me, that means taking time to meet with friends. Making space in my day and in my home to write. Saying “no” when I don’t really feel like doing something that my spouse/daughter/friend/coworker asks me to do. Occasionally putting myself first. Taking deep breaths and making sure my heart is full before assisting others.

Happily Ever After Starts Here

By Jill Wilbur Smith

Last Labor Day weekend, we attended my niece’s wedding in Michigan. It was a beautiful affair, held in a barn on property that’s been in my brother-in-law’s family for generations.

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About three hours into the evening, my sister came up to me looking concerned. “Emily just got upset and said she was leaving,” she said. In the old days, I might have gotten upset myself and frantically looked for Emily to try to calm her down. But on this night I didn’t.

“She’ll be OK,” I told my sister. “I’ll check on her in a while. Don’t worry. Go enjoy your party.”

Then I got another drink and continued to mingle with family. About 30 minutes later, Emily emerged from the house. She had found a quiet corner in which to sit and recharge. She came back to the party happy and calm. I was glad that I hadn’t run after her.

I’m trying to put an appropriate amount of distance between my daughter and me. I don’t mean that I’m abandoning her. I’m simply working to let her find her way. Because I’ve learned that the way she navigates out of painful situations is rarely the way I would guide her.

That’s difficult for me. I always want to help. To soothe. To be the one to listen and make all of the bad feelings go away.  But that’s asking too much of myself. And expecting too much of her.

So, I’m trying to give Emily the space she needs. To understand that she doesn’t always enjoy being in a throng of people, even if those people are family. That the way she connects with others isn’t the way I connect with them. Her happy looks different than mine.

Earlier this summer we attended the wedding of one of my other nieces. It, too, was a joyful affair attended by almost every member of my extended family. I could have danced all night, raising my red solo cup in song and toasting the happy couple.

As much as Emily loves her cousin, the evening was too much for her. But unlike the year before, Emily didn’t get upset and disappear. Instead, she calmly said to me “I’ve had enough for tonight. I’m going to go wait in the car.” I gave her a hug and told her we weren’t ready to leave, but that we’d join her when we were.

I gave her the space she needed, but I didn’t sacrifice my own needs in the process. And it was OK. No drama. No stress. No guilt. Just two women defining happiness in their own terms and accepting their differences.

That might seem like a small thing, but for me it’s significant. It’s taken me a long time to accept that the things that make me happy aren’t always the same as the things that bring Emily joy. That reality used to make me sad. I felt that Emily was missing out on an important part of life. But I now recognize the fallacy of my belief. I’m beginning to accept that her happily ever after, although different than mine, will be happy. I confess that I still have my moments of longing, but it’s a start.

 

 

How I Sometimes Forget That My Life Includes Autism

by Jill Wilbur Smith

Sometimes I forget that I’m the parent of someone who has a disability. Call it denial. Call it hope.

On good days, it’s easy to believe that I’m unaffected by autism and depression. On good days, it’s easy to think that my world is just like everyone else’s. On good days, it’s easy to forget.

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Then a bad day comes along, as bad days are wont to do.

If the good days have been many, strung together in a brilliant and dazzling display of calm and joy, the bad days hit hard. Crashing down on me with an unexpected force. Taunting me. Don’t forget, they tease. Life isn’t meant to be easy.

Rationally, I know that bad days aren’t reserved for families who live with disability and depression. Bad days aren’t particular. They happen to everyone.

But in that irrational, emotional place inside of me, they feel vengeful.

I’ve had a lot of good days in the past two months. I need to remember that. My mother and sister joined us for Thanksgiving. I got a promotion at work. I had a joyful Christmas spent quietly with family. I celebrated New Year’s by kicking in the ass the dark times of the past 12 months, hopefully thinking a new year will mean no more bad days. Silly me.

Maybe that’s why I’m especially saddened by the day that occurs only 10 days into 2014. What makes it a bad day is a confluence of events that might not be troubling had they all happened separately.

I’ve had an especially busy day as I transition into a new job. I’ve mostly ignored text messages from Emily in the afternoon indicating that she’s struggling. I hope that by the time I get home the storm will have passed and we can have a quiet evening. I’m at the end of my emotional tether.

I walk into the house to find Emily’s bad mood hasn’t passed. In fact things have escalated into ugly confrontations between her and her father and sister. They, too, have had a less-than-stellar day.

So, in my already emotionally fragile state, I forget that I’m the parent of someone who has autism and depression. I forget that the angry young woman lashing out at me isn’t really condemning me. She’s fighting some unseen demon that I can only imagine.

“I just want peace,” I scream at her.

“I don’t want peace, I want justice!” she replies.

I’m too exhausted to pick up my sword and help her slay her beast, whatever it might be. I turn away. I go downstairs and drink a cocktail with my husband. I leave her to cry herself to sleep alone in her dark room.

For a few more hours I pretend that she’s just choosing to be obstinate and defiant. I make believe that there isn’t a chemical imbalance in her brain that has been adversely affected by the dark Minnesota winter. I ignore the injustice I feel knowing that Asperger’s makes it difficult for her express her sadness in a socially appropriate way.

Later, I crawl into bed and turn out the light. As my eyes adjust to the darkness, I know that in the morning I will shed the mantle of denial. I will somehow find the right words to help her see through her depressive haze. I will have the strength to pick up my sword and continue to fight.

P.S. Many good days have followed since I wrote this post, with the occasional bad day thrown in to remind me of my special place in this world.

Social Energy: A Marathon, not a Sprint

by Jill Wilbur Smith

I’m in a book club with a group of women with whom I might not otherwise socialize. It makes for interesting conversation about the books we read, and I’m grateful that I’ve gotten to know them all so well over the past few years. I wouldn’t trade the experience for anything.

But, because these women aren’t my close friends, and because I only see most of them once every 6 to 8 weeks, it takes extra energy to attend the meetings. We meet on Friday night, not always my most vibrant time of the week.

The morning of the last time we met, I was having coffee with Emily and bemoaning the fact that I had book club that evening. It had been a long, trying week at work and I was psyching myself up for the night. I didn’t want to go. It felt like an obligation, not something fun.

“I like these women a lot,” I told Emily, “but I have to prepare myself to meet with them. It takes extra social energy to go to these meetings.”

Emily’s expression changed and she nodded her head. It hit me.

“I’ve just described every one of your social interactions, haven’t I?”

“Pretty much,” she said.

I’ve lived with Emily for 22 years, and this was the first time I really sensed what it must feel like for her to have Asperger’s.

I’ve been in other situations that require extra social energy: going to a party where there are people I’ve never met, teaching a workshop for the first time, interviewing someone about a difficult life experience. But these circumstances don’t occur every day.

For Emily, every day requires the type of stamina most of us only need occasionally. Even interacting with people she knows well can zap her social energy.

I’ve always known that Emily needs extra time alone to “decompress” as we call it. But now I have a little better understanding of why. Now I understand how exhausting it must be for her to go to work, meet with friends, take part in conversation around the dinner table.

When I’m faced with a difficult social interaction, I can usually take a deep breath, fix my resolve and sprint through the encounter. Emily, on the other hand, is running a social marathon. It requires constant training and conditioning.  And the resolve to just keep running, even when the finish line is nowhere in sight.

Is Tying Your Own Shoes Really Important?

by Jill Wilbur Smith

This is one of my favorite pictures. I love it for a number of reasons.

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I love it because it reminds me of my dad and his infectious laugh. He’s laughing because—as was typical—Emily has her shoes on the wrong feet. It reminds me of his joyful attitude and his ability to always see the lighter side of life.

I love it because it shows Emily with her shoes on the wrong feet. Silly, I know. But significant. Significant because 1) she was independent enough to put on her own shoes, and 2) it didn’t matter to her that she hadn’t done it perfectly.

In this picture, Emily is wearing shoes that have Velcro closings because, at 5, she couldn’t tie her shoes. A few months earlier, I had worried about this fact in the same way I had worried in previous years about whether or not she would ever give up the bottle or successfully potty train. (Of course, she eventually did both of those things, and reached many other developmental milestones. Just sometimes a little later than her peers.)

Emily has always done things at her own pace. Sometimes behind her peers. Sometimes ahead of them. At 4, she taught herself to read.

One day, her preschool teacher asked her, “Emily, when are you going to learn to tie your shoes?” Emily replied, “I already know how to read, you mean I have to tie my own shoes, too?”

She had a point. So for a while I only bought her shoes with Velcro fasteners.

Eventually Emily learned to tie a shoelace, and she hardly ever wears her shoes on the wrong feet anymore. It’s good for me to look through the lens of time at reminders that things happen at a different pace for everyone.

Life isn’t a race to see who can get to the developmental finish line first. It’s a journey. If I spend all of my time focusing only on what’s at the end of the road, I’ll overlook the things that really matter. I’ll miss out on the moments of joy—like the vision of a fiercely independent little girl blazing her own way through life. And the laughter of a grandfather who is totally in love with her.