Let’s Be Honest: Why I Quit Sharing Photos of My House
Okay, friends, it’s time to get real. Those of you who are long-time readers may have noticed that I have cut back drastically on the number hanging out around the house, photos I share here. I have almost entirely quit sharing photos of our house. For those of you who are newer, a quick perusal of my archives will show you that my photos used to be 90% of that variety.
There’s a reason I’ve shared a lot fewer of those types of photos in the last year or two, and it’s not because my kids are older and more camera-shy. It’s not because I’m worried about stalkers or Mark Zuckerberg somehow using the camera on my computer or phone to spy on us.
I am much more careful about sharing pictures of the inside of my home because of the ridiculous amount of damage done to it over the last couple of years and I am not talking about the wear and tear you would expect in our large family. Nope, I’m talking about serious damage done by our son with autism.
Our House Looks like the Aftermath of a Years-Long Frat Party
I am talking about windows with I HATE YOU etched in foot-tall letters in our living room.
Holes that extend from the floor to ceiling.
Places where the sheetrock has been broken all the way through to the sheetrock on the other side.
A shattered sliding glass door.
It is difficult for me to take a photo in our house without the damage being seen in the background. And the foreground. And front and center.
For the first time in my life, I am embarrassed to have people in my house. There is no way to excuse away the level of damage. If you are wondering why we don’t just fix it. We have. Over and over. As our son gets older, he gets stronger, and the damage gets worse. It is like a massive game of Scavenger Hunt Meets Haunted House. Every day we find new areas that have been damaged and it is exhausting (and expensive).
My Son Doesn’t Go to School. At All.
Keep in mind, my son doesn’t go to school, at all. And no, I don’t homeschool him. So what, exactly, does he do all day? He is supposed to go to the autism center from 12-3 but has been refusing to go lately. I cannot leave him home alone and end up being held captive by his moods. On a good day, I can get him to the center and spent two hours driving (half an hour each way) for him to be there for three hours, then rush home for ABA home sessions at 4 PM. On a bad day, he stays home getting bored and restless, making ridiculous demands.
{The school is supposed to send out home tutors (per his IEP) for my son since anxiety makes it impossible for him to attend. Here we are, SEVEN WEEKS into the school year, and they have yet to send a tutor out.}
You Must Be Really Mad At Him
After describing a recent incident to a friend she said, “You must be really mad at him”.
Mad at him? “No,” I told her, “I’m not mad at him because this isn’t his fault and he doesn’t have a choice”. These are not conscious decisions he is making. He is struggling just as much as we are. In fact, probably a whole lot more.
I love my son with all of my heart. Sixteen years ago we committed to being his parents having no idea how difficult this road would be to travel. We welcomed our son into our family with open arms and hearts. But nothing can undo the damage done to his brain prenatally. He was never given a fair chance at life. He isn’t a rebellious teen, he is a kid who struggles hard every single day of his life. A kid whose brain so far has not allowed him to have a fair shake at life. So we support him, fight to get him the services and therapy he needs and try to maintain some semblance of normal family life.
So there you have it, the truth. I am determined not to let the condition of my house stop me from posting photos in the future.
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I know you’re not mad at him–that’s not the issue. But from what you describe, it does sound as though you and your family are in danger, and as though one child, through no fault of his own, is damaging more than just your home. Have you considered a group home for him? In the long run, he might be happier. I have a schizophrenic brother whom my parents made a ward of the state in order to make sure he received care. This was decades ago in a different state from you–legally, they were divorcing their child, but morally they were doing the right thing, because otherwise he could not have had access to treatments and programs that helped him. I’m sure your child–I’ve followed the stories and pictures of him on this blog for years–wants to do the right thing, but is not able to find his own way. Consider having him live apart from you. Everyone I know with an autistic or schizophrenic child has had to find some individual situation that can be tolerated by both the family and the child. Two books that helped me: Clara Claiborne Park’s Exiting Nirvana, about her autistic daughter: https://www.amazon.com/Exiting-Nirvana-Daughters-Life-Autism/dp/0316691240/ref=sr_1_fkmr0_1?s=books&ie=UTF8&qid=1540374164&sr=1-1-fkmr0&keywords=leaving+nirvana+clara+claiborne#reader_0316691240
and Jeffrey Lieberman’s Shrinks (for the big picture)–in fact, I bet he or his office could help
https://www.amazon.com/Shrinks-Untold-Psychiatry-Jeffrey-Lieberman/dp/031627898X/ref=sr_1_1?s=books&ie=UTF8&qid=1540374225&sr=1-1&keywords=lieberman+shrinks
This is a complicated question with an even more complicated answer that I don’t want to share publicly. Just let me say we have many professionals involved in our life and with our son. We are navigating complicated issues made more complicated by duel diagnoses, insurance, waiting lists, and more. Most likely he will end up somewhere, as an adult at least. I think living in any type of setting outside of home with mom and dad will make him feel more independent.
For what it’s worth coming from a random blog reader: you are doing a really, really amazing job with a really, really hard situation. And, while I’m certain that it’s so much easier said than done, please try not to feel embarrassed about your house. You are doing what you can with what grace you can muster.
I second this. Hang in there. You guys are amazing.
Amen to this also.
I have walked in your shoes and it’s just feels hopeless some days. We have many, many dents in our steel entrance doors, our refrigerator doors and I am still finding dents in walls that I am filling with drywall mud and priming over every time I repaint a room. One specific son has been gone from our home for 2 1/2 years now and I am just starting to feel like our house is starting to look more presentable for the first time in more years than I can count. I was so ashamed of how run down and beat up our house was looking. We bought this big old farmhouse and lovingly renovated every single room, removing lathe and plaster from every wall, re-drywalling every wall, and decorating every kids room to their specifc interests, likes/dislikes and it was literally just a massive eye sore as they grew older, hit adolescence and started losing control on a regular basis. My son wasn’t diagnosed with autism until just before he turned 18 so there was no offers of ABA therapy or special school….we were just supposed to send him, pick him up when he got suspended, send him back a few days or a week later and then keep repeating the process until we finally gave up and stopped forcing him to go (12 suspensions and 1 threatened expulsion in his junior year of hs (from Sept to Jan) pretty much did it for us). So then he stayed home with me, voicing ridiculous demands every minute of every day and I was held hostage to his mood swings, no doubt about it. I wish I had answers. All I can say is that you’re definitely in a tough spot right now and just remember to take the time to celebrate the other kids in your home when he’s at therapy or school because I know how easy it is to be totally consumed by the one squeaky wheel. With the hiking and trips to the lake you post about, I can tell you are making some great memories with the kids that can handle it.