I’ve been thinking about writing an honest post for a while. But honestly, everything is so depressing and hard that I haven’t really wanted to share our truth. And I don’t want or need anyone’s sympathy; life is hard for everyone these days and we will get through it no matter what.
I started this blog to write about life with Gracie, and the truth is that life with Gracie is incredibly hard these days. So here’s a little snapshot of everything we’re dealing with.
When Gracie was little, she used to be the most mentally healthy little kid ever. She was able to adapt to every situation with grace and laughter. When she was a baby and we put elbow splints on her to keep her hands out of her mouth, she would put her pacifier in front of her and bend down to pick it up with her mouth. She didn’t mind having to change, having to adapt. In fact, it was her greatest asset as a toddler.
Years of medically-induced trauma, years of being different physically, years of enduring taunts and hardships, have destroyed Gracie’s confidence. Instead of being a silly, gregarious, happy child, she is an anxious wreck. I believe she’s experiencing medically-induced PTSD and anxiety, and it is BAD. If I go to the bathroom, within seconds she’s yelling at the door, wondering if I’m still there. If I leave the house without her, she freaks out—she texts and calls from her iPad every few minutes, she cries and destroys things, she is a hot mess.
Our mature toddler has grown into an emotionally delayed 10-year-old. She hits and bites and pinches and screams when she doesn’t get her way. She throws fits when I ask her to do math, when I ask her to go to the bathroom, when I say I’m going to the grocery store, etc. She bites her fingers and blames me for it, defiantly asserting that she wouldn’t have bitten if I hadn’t left. She holds me hostage for everyday decisions.
I am trying my best, but feel like I’m failing her every single day.
Several times, I’ve tried to find mental health counselors for her. For a while, she had one, but the counselor was no match for Grace. Gracie is incredibly smart and expertly able to steer conversations away from difficult topics. The counselor did not even realize that Gracie was manipulating her, was expertly avoiding difficult subjects. That counselor was our only option, though. Everyone else I’ve called doesn’t take Grace’s insurance or isn’t accepting new clients.
In Grace’s mind, the problem is that she doesn’t have any friends. Her one good friend has her own issues, in many ways more severe than Grace’s. We have had the friend over several times this summer, but it’s never enough for Grace. She’s insatiable. This past weekend, she made friends with a girl her age from down the street. Instead of being happy to have a new friend, though, she bit her fingers even more severely than usual, explaining that it made her miss her other friend to find someone new.
Each finger bite is a low-key expression of suicidal ideation on Grace’s part. She knows what she’s doing when she bites. She knows that any infection could become life-threatening. Still, she bites. She takes bandages off the worst fingers and bites them again and again, until they’re bloody pulpy messes that would be down to the bone if the bones still existed. I bandage her fingers about three times a day these days—that’s three times as often as should be necessary, but she’s removing bandages every time I put them on. I find little dirty pieces of tape and dressing all over the house and yard.
I am out of ideas of how to help her. I know she needs counseling from a good counselor but can’t find one for her. I know she needs to make friends but with COVID, we’re not going anywhere and she’s not at school this year anyway (I’m homeschooling the big kids, which is a challenge in itself). I have tried to reason with her, tried to scold her, tried to hug her more, tried taking her iPad away, tried everything I can think of. Nothing is helping. If anything, she’s getting worse and worse.
And these are only the struggles we’re having with Grace. We’re having so many other struggles, too. Chad and I are having marital difficulties—although it’s better lately, we’ve spent much of the summer fighting, and it seems our differences are so fundamental as to be insurmountable. Jackson and Grace fight a lot, too. At least once a day, they scream at each other, usually when I’m trying to get Elliot to sleep. As I mentioned, I’m homeschooling the kids, which is nightmarish. One or the other of the kids defies me every single day, by which I mean refuses to do their work. Of course, the other is a perfect angel when one is throwing a tantrum. They take turns being the tyrant and the angel. I feel like I’m failing them, and my only saving grace is that they would probably be doing even worse with online learning (neither learned much last spring). But it would be someone else’s responsibility to make sure they learned things, not mine. Professional teachers really, REALLY earn their salaries.
Then, of course, there’s the reason they’re homeschooling in the first place. I lost my job this summer—really, I lost my career. There are basically no more opportunities for remote legal editors. I am having to reinvent myself at age 42 and it’s depressing as crap. I’m taking a class to become a CNA so that I can get paid for some of the tasks I help Gracie with daily. The class discusses things like to make sure to shower before a job interview, and not to bring children or friends with when you go to the interview. It’s unbelievably depressing to be back at square 1 after all these years, and to be so desperate for an income that I’ll gladly accept any work that comes my way. What’s even more depressing is that I’ll be making almost as much money as the grunt worker with no amount of education required as I made in a highly educated professional position.
I don’t want anyone’s sympathy, and I didn’t write this because I wanted to draw attention to our plight. Others are struggling, too; so many are in worse situations than us. The only help I’d request is if anyone knows of a good counselor for Grace, please send them our way. Or, you know, thoughts and prayers for a good counselor to materialize would be great, too. ❤
I know exactly what your going through. After R’s last surgery the surgeon suggested a counselor for PTSD. It took forever to find someone that would see him and then she was insistent that he didn’t have PTSD. He has started seeing another one remotely just this last week. They seem to have clicked I just home she can help him cope. His anger is directed mostly at me as I am the mom, caregiver, appointment setter, and every other task known to man. The therapists, both mine (I had to start seeing someone also as my life as I once knew it was dissolving quickly) and his reminded me that we treat those we love the worst as we know they will be there no matter what. It frightens me to even think about the day that I am no longer there. It is so very hard not to take what he says and does personally and I would consider it emotional abuse. I am the sole income in this situation as his Dad has never wanted to be involved. We were divorced many many years ago. Taking care of people is hard work physically and emotionally and sometimes I just wish someone would take care of me or make a decision so I don’t have to and just let me take a breath as realize that it’s going to be ok. I’m writing this after cooking my own breakfast after taking R and his Dad to town to enjoy a meal out and they couldn’t decide where to go and once I finally picked somewhere, R insisted he wasn’t hungry and refused to get out of the car. At 19 and being in a wheelchair it is impossible for me to make him do anything. I put his wheelchair in the car and drove back home and cooked for myself. Exhausting, I totally know where you at! Hugs to you Susan, prayers that a therapist materializes to help Gracie deal with life and make your life better. 🥂 To better days ahead for all of us!
I’m so sorry you’re dealing with this, too! It’s so hard. Prayers to you, too, that things get easier for you & R. You’ve had so much to deal with these last several months; I hope things ease up for you. ❤ Hugs.
P.S. Yes, it’s definitely emotional abuse! Grace actually physically abuses me. She gets so mad and will come at me with fists raised, or she will kick me, or she’ll pinch me, or whatever. For now, I’m much bigger and stronger than her, and I can restrain her for the most part, but that won’t always be the case.
Just like when they were little and we tried not to respond to the worst behaviors, I try hard not to respond to the physical abuse other than restraining her. But sometimes it HURTS. And the emotional abuse must hurt even worse–we’ve spent our entire lives trying to help these kiddos, trying to keep them alive and help them realize their every wish, and it hurts so much to take the abuse.