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Monday, September 14, 2015

Summer Wounds

I'm baaack...
There are two things I need to have in order to write. Peace, and a working computer. Neither of which I have had for the past three months. Very frustrating. But we all survived summer, and that is success. People ask me "How was your summer?" I don't even know how to answer that. If I can answer, I say, "We all survived. No one killed each other, so I'd say it was a successful summer." People think I'm kidding. 

I'm not.

So many times I looked into my children's eyes this summer and the thought flitted across my mind-

"I have no idea how to parent you right now." 

How do you parent such extreme, intense anger? How do you parent a constant barrage of swearing and foul language...all because you suggest that a child put on clean clothes today for a change. How do you parent irrational anxiety? How do you parent all this and stay compassionate, kind, and fun yourself? I don't know the answer. I feel like my soul withered this summer, like it tends to do most summers when we're all together all the time. 

This summer I decided I was going to have realistic expectations of our family. I was not going to make the kids do things I knew would end in disaster. Things like visits to the zoo. Or a museum. Or road trips of any kind. (Except a couple to grandparents' homes, which were worth the struggle in the car.) Or any of the other things I watched other families post about on Facebook this summer. Nope, not us. We stayed home. Where life was stable and predictable. Not worry-producing. Not unexpected or surprising. Which is why my soul dried up. Because I am unlike my children, in that I enjoy adventure, zoos, being in unfamiliar surroundings, people-watching, having lunch somewhere other than home...but this summer we did what my kids find comforting. We stayed home.

We did go to the pool many times, but that always ended in knock-down, drag-out, towel-whipping disasters. *sigh*

It was a summer of wounds. Our house has fresh wounds from the past three months. There are new holes in the walls from people punching them or using door knobs as batting rams. Doors have new cracks in them from being kicked open. The fancy office chair was ripped to shreds by boys who apparently needed sensory input while using the computer, so they just kept picking at it. Certain drawers won't shut properly because they have been slammed so many times. My kitchen counters have new stab wounds where angry boys impaled butcher knives into them in fits of rage. I figure at least they didn't impale the knives into another human. (The knives were hidden most of the summer, but once in a while the boys found them. Hidden among my stash of fruit snacks for Ella and the lighter for candles. My important, off-limits stash.) My laptop was mortally wounded by a boy who thought he was a cowboy, so proceeded to whip a belt through the air, lasso-style. The belt cracked the computer screen. Hence, no summer blogs.

Aidan had a tricky end to his summer with a big wound. He sprained his foot while riding a bike without shoes on. He cut his toes and twisted his foot so badly it was black and blue for weeks and weeks. He was in a walking boot and on crutches for almost the last month of summer. Not a fun way to end the warm months of freedom. But he persevered. He was elated when he got his boot off the day before school started. He felt reborn. You should have seen his beaming face.

For Ella, it was The Summer of No Sleep. Oh wait, actually, it's been The Life of No Sleep. Oh wait, actually, that applies to all four of my children. Hang on, let me go make another couple gallons of coffee.

After careful thought, Alex and I decided to have Ella formally diagnosed at the end of summer with Tourette Syndrome. I've known since she was two years old that she would fit this diagnosis, but we didn't need a formal one since she wasn't struggling in school. In preparation for the eventuality that she will follow in her brothers' footsteps and need help in school, we thought we'd be proactive and get a diagnosis before we're in crisis mode. The psychiatrist went over the criteria for Tourettes with me, although we both chuckled because if anyone knows Tourettes, it's this girl. But as a formality, I nodded through all of his questions: Have Ella's tics come and gone for a period of time- waxed and waned? Have her tics changed? Does she have both vocal and motor tics? Yes, yes, yes. Ok. Formal diagnosis given.

When Ella was four years old, I asked the psychiatrist if he treated kids that young, because like her brothers, she wouldn't sleep through the night. No matter what. At the time, the doctor said he did not treat kids that young. So two sleep-deprived years later, I was back in his office asking for help again for sleep. He does treat 6 year olds. I know medication is extremely controversial among families with kids who have special needs. My opinion is that we shouldn't judge each other. You don't know what a family is dealing with behind closed doors, in the dead of night. You don't know how many hours of desperate worry, collaboration with therapists, doctors' appointments, brainstorming, and endless more worry that family has been through. We should only encourage each other and tread lightly with the raw hearts of special needs parents who are making tough decisions. The only option that seems to be left to my desperate, sleep-deprived soul is medication. Medication in conjunction with essential oils, weighted blankets, therapy therapy therapy, homeopathic treatments, brushing, more therapy, and inordinate amounts of worry. So we started little Ella on the sleepy med her brothers all take.

So far it isn't really making a big difference, unfortunately. Ella's anxiety is completely over the top, with school starting, and that worry keeps her up for hours at night. In therapy, she has named her worry "Mrs. Worry." Mrs. Worry is making Ella a hot mess these days. I don't know if I've ever seen her so sad for so long. She is struggling so much with anxiety right now. One day last week, Alex had to pick weeping Ella up and carry her onto the bus and put her in her seat. When he came into the house I said I can't bear to see her so sad. I think I need to pull her out and home school her. Alex gently reminded me that each boy before her was just like this. And now they're better, he said. But later that day it dawned on me that they're all managing life a little bit better because they're all on anti-anxiety meds!

I talked with the psychiatrist about Ella's anxiety. I asked him for his opinion on anti-anxiety meds for her. The doctor said he thinks that based on our family's history, it's only a matter of time before she starts them, so it might as well be now when she could really use some help. So we made the decision to start her on a low dose of anti-anxiety medication- the same one Aidan takes. It struck me as almost chuckle-worthy, because imagine this: I'm in the psychiatrist's tiny office with all four of my ticcers. It's chaos. Two kids have their shoes off and are trying out the doctor's fancy scale. I'm cringing because given their track record, I know it's only a matter of moments before they break the fancy machine and I owe the doctor thousands of dollars. Two kids are playing with dog puppets and legos on the floor, and the "dogs" are howling as they build lego flowers to lick and smell. And the dogs lick louder than any kind of animal I've ever heard. It's chaos, as usual. Chaos. The doctor and I talk over the cacophany of howling and fighting about the scale, as well as the smell of stinky boy socks. He asks me whether Ella's anxiety reminds me more of Aidan, who takes one kind of anti-anxiety medication, or Ben and Jonah, who take a different kind. I smiled and pointed to Aidan. Because while Ella's anxiety does wake her up at night, every night, for hours on end (like Ben's used to), she has the same trademark issues of Worry that Aidan does. Or used to before he started his medication. 

It was just funny to me, thinking about how I sort of had a menu of Anxious People Options to choose from. 

"Based on Ben, Jonah, and Aidan's medications and how they have responded to them, which medication do you think we should try first with Ella?" 

It was just surreal, I guess, knowing that now I officially have FOUR children diagnosed with Tourette Syndrome, and that all FOUR children are now on medications despite my best efforts to keep them med-free. I admit I shed a teeny tear when I pulled out of the Walgreens drive thru (where they know me better than most of my neighbors, sadly enough) with two tiny bottles of medication that had my daughter's name on them. It's not that I didn't expect it. It's just...surreal, I guess. 

I'm fascinated by the road this life is taking our family. It's hard sometimes not to bury my head in the sand and deny the reality that is my children's special needs. It would be easier in some ways to just pretend things were normal, that Ella never sleeping is normal, that a crazy level of anxiety is normal, that daily rages over putting on shoes and doing homework is normal...

But it's not. And I owe it to my kids to hold their hands and walk forward on this crazy road, acknowledging our wounds and hurts and special needs. But at the same time, also gratefully embracing the joy that this life brings us. Sometimes I have to look very, very hard for the joy, but it is there. When Alex snuggles with Aidan and the puppies on the hammock in the back yard. (Oh yeah- we got another puppy this summer!) When the kids slide in pillow cases down the stairs, screeching with glee. When we imitate each other's laughs and end up rolling on the floor like the end of a classic Peppa Pig episode. There is joy. I just have to keep breathing, and keep up my mantra...despite the wounds, there is joy.







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