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The trenches

We hear "in the trenches" often. A trench is literally a long, narrow ditch. They were intentionally dug or existing ones used during war times to protect the soldiers against large expanses. Parents, and others, have adopted the phrase to indicate times of intense struggle. A war-like time, if you will. I rarely feel as though I am "in the trenches" anymore. But there was a time I lived there, set up house, and thought I would never leave. Endless nights of screaming baby followed by early rising toddlers demanding food and attention. And love. Multiple massive meltdowns daily and a child wanting to learn. A husband who left, bleary eyed, for work every day and sometimes traveled leaving me alone. One car which my husband took to work leaving me stranded. No dishwasher. Prepping food, cleaning up after food, and washing surfaces and dishes five or more times every day. While wearing an infant or, later, attempting to prevent a mobile child from destroying his brothers toys. Normally, infants don't sleep awesome. It is their nature to struggle going from that warm, cozy, floaty bed to cold separation and motionless cribs or cradles. (We co-slept some of the time, and some love it while it doesn't work for others). The kind of sleeplessness we got with Mack was of epic proportions. His allergies and sensitivities to foods I was still eating while learning what he reacted to caused him extreme discomfort. When all was calm and he wasn't distracted by his doting (mostly) older siblings, he felt the pain. He screamed and scratched all night. He slept in 45 minute stretches for a total of about four hours a night. Leigh and I slept less. Cosleeping, nursing through the night, rocking, singing, and shushing did nothing to quell the itchy beast. If you have ever had eczema or hives, you know the intense itch and pain they cause. There were times when I could no longer hold my thrashing, scratching infant because I was more than exhausted and overly touched out. I had to walk away so I wouldn't hurt him. Mommas, it's ok to walk away. It is perfectly fine to go take a minute and breath. Do it. Go cry. Go scream into a pillow. Take some deep breaths. Then, come back and hug that precious child. So I set him down. I walked away. I screamed into a pillow. Leigh was wonderful. He picked Mack up when I couldn't do it anymore. But we absolutely fought. Leigh thought I had some super human ability to keep on going when I was broken. He thought me putting Mack down and walking away was quitting and giving up. We were both so sleep deprived we couldn't communicate with each other respectfully. We yelled. We fought. Leigh sometimes left the house because it was all so overwhelming. He always came back. We got through the darkest year of our marriage. As we learned Mack's food triggers, he got better. He began to sleep. So did we. The skies cleared a bit. We still had a very young child with severe, life threatening allergies we needed to protect. But we could because we slept. Not only was Mack fragile, he was fearless. This kid flew off the front porch and onto his head. He only cried about five minutes before he was off and running again. He flew over rocks and across trees as though he were raised in a jungle. And his single goal in life was to disassemble everything possible. We thought he was destructive. He was not. He was learning how the world works. He still does. But with a bit more finesse. Only a bit! I won't lie, or sugarcoat our experience. You need to hear that we were there, in the trenches, and we dug our way out. Rory and Will got the short stick that first year with Mack. We barely had enough wherewithal to feed them, much less do anything else. Somehow we managed to take them on walks, to the zoo, to the beach, and more. But most days were spent with me half awake holding and nursing Mack while Rory and Will watched TV or played together...or really alone next to each other because Will couldn't communicate effectively with Rory yet and her play was more sophisticated--we thought. Will was a surprisingly easy going baby and toddler. Aside from the massive meltdowns anytime things didn't go according to his pre-planned conceptions that he had telepathically communicated. We clearly missed the message and he screamed. Every time. Other than that, he would sit on the floor and line up toys. Animals, dinosaurs, cars, blocks. They were sorted by color, size, type. He was meticulous. Friends who observed this obsession often asked whether Will was autistic. We said he was just quirky. Shortly before Mack was born, Will began having meltdowns about bedtime. He had weaned from nursing, but had generally gone to bed well. One night, I was out for a coffee date with a friend, and Leigh handled bedtime. I was nervous, but Will went down without a hitch. Happily got in bed and drifted off to sleep without a peep. We thought he was over whatever it was that had caused the issues. So the next night, we went about bed as normal. Expecting Will would be fine like the night I was gone. Nope. Massive meltdown. Hours to help him get to sleep. Disruptive to Rory. I had another coffee date night and Leigh had another night without meltdowns. We tested a hypothesis. Does Will not want me putting him to bed at night? So I continued leaving the house. I grocery shopped, putzed around the store, went on walks. Leigh did bedtime. Will went peacefully to sleep. Of course, this was not sustainable. Gradually, I started staying home, but being uninvolved. I hid out in my bedroom while Leigh did the rituals. Then one night a week, I did rituals with him. No issues. Added another night. Fine. And another, and so on. I earned back my right to be part of bedtime. To this day, we don't know why Will acted like this about bed. Our only thought is he resented me for putting him down for a nap AND bed. Will's meltdowns at two and three were no big deal. Toddlers have fits (there is a difference which I explain here). Even at four and five, we thought he was just an intense kid. But nothing was "wrong". Then, he struggled with writing his thoughts. He struggled more with transitions and missed expectations. He refused to engage with school and anything else that wasn't his idea. We thought...oh, he's are we. No big deal. I can be more stubborn. His "fits" became bigger. More intense. Longer. We realized he couldn't hear and process our words while he was having a meltdown. When Will was about six, we decided his behaviors weren't part of normal. They were extra. And something might be "wrong". We didn't want to admit that. But it was time to face the music. We started the journey toward evaluation and help. We were beat. We couldn't do it alone anymore. It took a year or more to get an evaluation and care. Everyone said Will was a grey area. Some practitioners would say, yes he's autistic. Others say no, just anxiety. In our hearts, we knew the former were correct. Will was born autistic. His intensities as an infant and toddler, his lack of language development early on, his obsessions all should have been our red flags. His meltdowns are what pushed us over the edge to diagnosis. We had learned, more or less, how to deal with them, but we didn't understand them. Or him. We needed to. Even though Leigh is autistic too, his childhood was different. He didn't have support or diagnosis. He figured it out as he went. We wanted more for Will. I started the deep dive into books written for parents like me. And never saw my home. I saw snippets that seemed more or less than what had. I saw pieces that almost made me feel connected. I gleaned little tidbits here and there about how to help Will. But I never really saw us. I knew I couldn't be the only parent lacking that connection. So I started creating it for myself and others. Hence this blog. And my book. Will is now 11. Almost 12. We still struggle with the same issues of transition and expectations and compromise. More now with communication and how to interact with siblings and friends and cousins. Teaching him that just because he sees it doesn't mean others do. That his bluntness comes off as unkind and rude sometimes. Will is brilliant. But, as many brilliant people do, he struggles with the world's expectations for him and his behavior. He still has meltdowns. But they are less frequent, shorter, quieter. He's learned coping skills and that firm hugs with calm breathing help him process. Though most posts I write now are without this undertone of warfare and despair, I want you to know I was there. Right there with you. Wringing my hands every day wondering what I was doing wrong. Why did my son scream all night? Why didn't my other son want me to say goodnight to him? Why couldn't I sleep enough to teach Rory all things her brain wanted? Will I ever get out of this? Will I ever see light? Is there an end to this war? I am here to tell you. Keep fighting the good fight. There will still be battle field days. But the exhaustion of it will wane. It will never disappear, but it will lessen. We have more good days than bad, finally. Leigh and I are great. We finally get to do things for US instead of the kids. Keep it up. But cry out when you need to. I am here as a "been there" listener. And virtual hug giver.

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