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The Shape Shifting Ghost of Trauma

Every year before my birthday, I try to go to bed early, because my anxiety gnaws on me until I can’t take feeling like a caged animal anymore and I just want to rip the bandaid off of the next morning.

Last night, however, I decided to stay up and face the day at midnight. I ran the laundry, tried unsuccessfully to read and generally tried to distract myself until the clock struck midnight.

I sat on my couch and meditated for ten minutes before crawling into bed. Eric groggily rolled over and kissed my forehead as he said, ‘Happy birthday.’ The tears I didn’t know would come, silently stream down my face as I bury my body into his.

They’re tears of exhaustion and sadness and grief. Inexplicable grief. The exhaustion of a constantly shapeshifting ghost of trauma and its hall of mirrors of which I can never seem to escape. The stifling feelings seep in like a fog, subtly at first, where it’s hard to notice. And then all at once, the fog is so thick I can’t see.

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Today marks 25 years since I was raped. It is also my 42nd birthday.

This year, as it has been for most of you, has been one of the most difficult I’ve ever experienced. I started the year with a terrible case of the shingles, for which I am still in physical therapy with no end in sight. I am currently recovering from a kidney stone. I have struggled with kidney and bladder issues for years because of scar tissue from the sexual abuse I endured from childhood.

My birthday has always been my personal barometer. The only way I know how to live with the baggage that comes with extreme trauma is to be open and vulnerable about what I experienced. There are no support groups for my level of trauma, no peers to talk to about it, only a therapist and a trauma specialist. Because of this, I have to talk about it because if I don’t, I feel the shame creep up my face until it’s on fire and I refuse to feel shame for someone else’s actions.

Every year, in the season of my birthday, I make myself busy, busy with something I feel is meaningful. I’ve never stopped going to therapy, but therapy for me has changed over the years. Initially, it was for acute trauma and trying to manage my anorexia enough to keep me out of the hospital. Then it morphed into therapy on trust and healthy relationships. I knew I would never have a healthy marriage and children if I didn’t. Then again it changed, into how to parent without being driven by fear of their safety. Now I go on an as needed basis, except for the three months before my birthday. Sometimes it’s once a week, sometimes monthly.

This year, because I am recovering from shingles and the pandemic, I don’t have a distraction. I don’t have a project. I’m just…here.

The root of my struggle with anorexia was and continues to be control. I started starving myself when I was seven, searching for control in a situation of abuse. I’ve been in recovery for twenty years; I wake up every day and actively make a choice to fuel my body and not starve myself. Twice in the last five years, I’ve almost relapsed. Both times, my team of providers helps me fall back onto what I call my ‘default plan’ — a plan in place so ingrained in the very fabric of my being, it’s a comfort to lean into it.

This summer, when the fog crept in earlier than normal, my therapist looked and me and ask, ‘Have you ever noticed that the only thing we’ve discussed over the years are things out of your control?’

I laughed, because until that point, I’m not sure I recognized that. I simply continued therapy because I wanted to be the healthiest person I could be. But that simple statement brought an epiphany — there are things I have control over (and don’t condescendingly say how to react and handle the situation because I’ve been gracefully ‘handling’ it for years). I was infuriated the shingles were bad enough to go to physical therapy twice a week. The answer the universe was trying to show me is to value my sleep. When I got the kidney stone, I was dehydrated. The lesson the universe was trying to tell me is to take care of myself before others because I can’t pour from an empty cup. In the simplest terms — I need hydration and sleep.

It sounds so simple, but I can feel a transformational shift. I don’t know that I’ll ever celebrate my birthday like a ‘normal’ human, or that it will get easier. My trauma is the petulant child in the room, demanding my attention while I try to ignore it. But this year, instead of trying to please a petulant child while holding my grief at a distance as my inner peace struggles to regain footing, my trauma, grief, and peace are sitting together, cohabitating with each other. They have settled into the core of me and I am able to breathe.

Tips for Surviving the Holidays with a Child on the Autism Spectrum, from Six Moms who Write About Autism

Tips to Surviving the Holidays with a child on the Autism Spectrum

A few weeks ago, I had a discussion with a mom whose child was recently diagnosed with autism. She posed the question to me, ‘How do you do the holidays with meltdowns?’ I rattled off a few ideas without giving it much thought.

Later, I thought maybe it would be a good idea to write down some of these recommendations, not just for families who are newly navigating the holidays with a new diagnosis, but for their extended families and friends as well.

So, I went to some of my friends who also write and talk about autism, through their blogs, TV channels, and freelance writing and polled them for suggestions that they wish people knew. They enthusiastically agreed to help, because all of us know how hard this time can be, and with a little navigation, the holidays can be magical for everyone.

It took me two tries to put this post together. The positive thing happening in our household is that our boys are tiptoeing out of their comfort zones. The meltdowns had been decreasing, but with new experiences, come new meltdowns. The thing I did not expect is that sometimes, the meltdowns don’t happen at the time of the overstimulation, but later, when something small finally breaks them.

The first time I sat down to start composing this post, about a week ago, our youngest had a meltdown and was uncontrollably crying for reasons I still cannot pinpoint. I chalked it up to him being exhausted, and carried on about the day.

Then, yesterday, was a long, exhausting day for our family. It started out with a chess tournament that went much longer than I expected. I could tell that Theodore was at his breaking point, and started to yawn, one of his ‘tells’. He told the others that he was just really tired, but in reality, this is his way to covering up that he’s about to break. I then took the youngest to a birthday party, and then immediately after, we went to the local Christmas parade, an experience over stimulating for just about anyone. We had two sets of tears the entire day, with no major meltdowns, so I was calling it a win.

Then today happened. I sat down at my computer to finish compiling this post and was interrupted by a meltdown with the oldest. He was cranky all morning, which he told me he was just tired, but I had a feeling the meltdown was coming. It did, with all of its hard-to-catch-your-breath crying. He’s finally old enough to tell me that yesterday was just too much. That’s a milestone, but also a reminder of how we need to handle the holidays.

So, wondering how to survive all of this stimulation and have a magical holiday? Read on to learn from my mistakes, and tips from five other smart autism mommas:

1. Prepare, prepare, prepare. I tell my kids daily what is in store for the next week. I regurgitate every day what will happen that day, the next day, and for the next week. That way they are not blindsided by the schedule.

2. See Santa when no one else does. This takes some planning, but we never go immediately after Thanksgiving, or on a weekend to see Santa. The crowds and noise are just too much. We usually go right after school on a weekday afternoon. The crowd is much smaller, and the noise is much less!

3. Have traditions and create consistency. Our boys know exactly what to expect with our holiday traditions, which makes for a much smoother holiday.

4. Know your limits. Doing things on back to back days are out of the question for us. Our kids need downtime to recover and recharge. Decide ahead of time how much time you will spend at a party or an event, and do it according to the child’s limits. If a child can handle two hours of over stimulation, leave at least 15 minutes before the two hour mark, creating a buffer.

Eilleen “Mama Fry” Shaklee, Autism With A Side Of Fries

1. If my family is visiting, don’t be offended if we leave early. I know when my kiddo has had enough.

2. Don’t be surprised if me and my kiddo go off to a different room for a little sensory break.

3. Whenever my brother in law has us over and I ask what can I bring? He always replies, “Whatever Kiddo is eating at the moment.” If I show up with tupperware, don’t be surprised. LOL

Kathy Chlan, Unfiltered Mom

1. You need to embrace the song “Let It Go”. “Let it go, let it go. Can’t hold back anymore”. Have no expectations and you won’t feel like the holiday was a failure. Grab a glass of wine and chill!!

2. Set up a spot where your child could go if he feels anxious. Kids on the spectrum are socially awkward and don’t know how to deal with crowds. If you are at a party, find a spot for him and show him. My son always found a spot by the alcohol. Should I have questioned that? Lol.

3. Give them a job on the holiday. Make it special for them. One year my son wanted to make an apple pie by himself. Instead of stressing out, I let him. Sorry to say, the dog wouldn’t have eaten it, but we did! Except my youngest told the truth and said ” Is this for real or are we being punked?” A time of love – yeah right.

Tara Wilson, Don’t Lick The Deck

1. We try to keep our daughter’s favorite traditions consistent from year to year. If she knows she can count on new Christmas Eve jammies, cinnamon buns on Christmas morning, and having her presents in a Santa Sack, then she’s quite content to cope with some extra chaos and changes in routine.

2. The iPad has allowed us to go places that would normally be too overwhelming and taxing on the nerves, like Grandma’s house. Our daughter gets her iPad and noise-cancelling headphones. I get my Ativan and a soliloquy about what a disappointment I am. We know who’s winning here.

3. “NO!” It’s a favorite word of our daughter, second only to “chips” and “I want.” We’ve learned to use the word more ourselves. Many of us in the family have low sensory overload thresholds, and we recognize that we function better when we build in lots of down time. Although I apparently forgot this fact when I agreed to bake six-dozen cookies for an exchange party, on the same weekend as the twins’ birthday party. Commence meltdown.

Kristi Rieger Campbell, Finding Ninee

1. Yes, the noises my son is making while he does laps around the room are normal, and he’s fine. Also, he can tell that you’re staring at him. Feel free to talk to him instead.

2. Ask us what our son would like for a gift before buying him something that he’ll struggle with using, like a fancy new bicycle.

Nicole Jankowski, Mom of 4 is Tired

1. With a son who is severely autistic, and mostly non verbal, as well as 5 other kids in our house, I think the most important thing I’ve learned is to keep my expectations reasonable. If someone invites us to an event that is going to be more stress than fun, I’m much more willing to say no now and plan something that is more autism-friendly for our family to do instead. If I know my son won’t enjoy going to an event, but my other children will, I don’t mind bringing some of the kids and letting him sit something out every once in awhile. The holidays are filled with so much activity, no one has to miss out on anything—it’s just figuring out what works best for who.

2. The only other tip I would have is to give your child with autism—or other children with autism—gifts that they will like, even if it’s not a gift you understand. I struggled with buying “age appropriate” gifts for my autistic son as the years passed and he was still interested in playing with less developmentally appropriate toys. I make sure he has plenty of age appropriate things to play with—but if his favorite show is Max and Ruby and he wants a stuffed Max, I think I’ve made peace with giving it to him. I don’t understand plenty of things that my other “neurotypical” kids like to play with (Shopkins? Minecraft?). I try to let happiness rule the holiday—and respect that gift giving is just one more area of raising a child with autism that I can’t control.

How about you, sassy friends? How do you survive the holidays?

Twelve Years Ago, My Husband Proposed to Me in a Bathroom

Excuse the dated manicure.
Excuse the dated manicure.

Fourteen years ago, a local magazine featured me as one of the ‘Sexiest Singles in Town’. Yep, that happened.

Anyhow, I started writing a relationship column for the same magazine shortly after. You know what that means — the crazies came out of the woodwork.

More jaded than ever, I had absolutely no interest in getting married. Shortly after the column started, I was auctioned off for a date at a black tie charity event.

For some reason that night, several married men hit on me, pushing me even further into the belief of never wanting to get married.

At the end of the night, a man wearing a wedding ring came over and asked me if I was still single. Just as I was about to go off on him, his wife walked up. They wanted to introduce me to their friend. I told them my number was in the book and forgot about it.

Well, their friend called me on Monday morning at my place of employment and I agreed to have dinner with him that Wednesday night. He wanted to pick me up, but I refused, and told me I would meet him at the restaurant. Who did he think he was? He could’ve been an ax murderer for God’s sake.

So, on April 16, I walked into Olive Street Bistro in Shreveport, Louisiana, and there he was– the man I was going to marry wearing an orange, long-sleeved button up sitting at the bar. I knew instantly I was going to marry him, which was unbelievably unnerving, since I never believed in love at first sight.

Less than two months later, I had moved in with Eric into an old, charming 1920’s home in South Highlands in Shreveport. This house had an original black and white bathroom, complete with the vintage tile I am obsessed with. Anyhow, we started to restore the bathroom shortly after I moved in, complete with redoing the cabinets. The last thing that needed to be done was to bleach the floor.

Then, Eric started to ask me when I was going to mop the floor in the bathroom. For those of you that know me even a smidge, I fucking hate being told what to do. I hate it with a vengeance. So, I didn’t mop the floor. This went on for two weeks. Because no man was going to tell me what to do, damnit.

But, finally, I mopped the floor on a Sunday morning, July 27, to be exact (12 years ago today!). That night, I was sitting on the couch and he went to take a shower. When he came out, he put on the Michael Buble song ‘That’s All’, and asked me to dance with him. As we were dancing, he said, ‘I love you’, and I said ‘I love you’ back.

Then, he said, ‘I love you more’, to which I said ‘Prove it’.

He instructed me to go look in the bathroom. Sitting on the black sink was a blue Tiffany’s box. It was my engagement ring.

He proposed to me in the bathroom. He had waited to ask me until the floor was mopped, to signify that we had completed our first of many projects together. We got married less than seven months later (yes, to those that are counting, less than a year after we met) and the couple that introduce us served as a bridesmaid and the best man in our wedding.  I’m also pretty sure he’s not an ax murderer.

So now, this photo has been in every bathroom we’ve ever owned. When we moved into our house we built, we used the same tile in our master bathroom as was in the bathroom he proposed in, except now they are in a chocolate brown, not black.

The first few months we lived in our current house, the photo was out for framing, and something felt ‘off’. When it was finally hung up, he and I looked at each other and said ‘now it feels like home’.