I Think I Told You
Lately my son Jack is very, very angry.
He is not himself, although to be honest, I don’t even know what he looks like as himself, since we constantly ebb and flow through good days and bad—smooth, sunny sailing juxtaposed against rocky waters with a lot of wind.
Who is he? Who is this boy?
Who is this boy who rants and rails at everyone in our house?
Who is this man-child who stands taller than me and yet screeches like a baby if his fork drops on the floor?
We had to adjust the medicine he takes for anxiety. Maybe that’s the problem.
He’s thirteen and going through puberty, so that could be it too.
He also has autism, which means all bets are off when it comes to figuring anything out.
See, I am always trying to understand what is behavior, and what is the spectrum disorder, and what is simply a boy with the emotional maturity of an 8-year old trapped in a teenager’s hormone-riddled body.
He is confused. He is scared. So am I.
I’m sure I told you all about the stimming, and the way he grunts and jumps around the room. He’s loud. His footsteps make great big stomping noises, especially if he’s wearing his sneakers.
There’s new stuff now. Throughout the afternoon and into the evening, he paces the perimeter of the room and traces the walls with his fingertips. He goes around and around until my head spins.
He’s fascinated with the faucet in the kitchen. And by fascinated, I mean turns it on and off about a million times a day, testing the hose and spraying it all over the counters and sometimes the floors. And when he isn’t running the water, he’s filling the sink with ice.
He uses a glass to get the ice from the ice machine in the refrigerator. And I promise you, if I never hear the clink-clink-clink of ice on glass for the rest of the my life, well, it will be too soon.
I told you all about how autism strains my marriage. It is a weight we carry differently—my husband Joe straps it to his back and climbs up long, steep hills like a solitary man on a mission. He brings Jack to church and shows him how to cook bacon in the microwave and explains why you should always change the oil in your car.
I carry it beneath my beating heart, in a sacred space few people ever see.
The problem is, a man on a hill and a woman’s beating heart rarely agree in the heat of the moment, like when Jack is hiding underneath the hibachi table screaming swear words at our local Japanese restaurant on his brother’s birthday.
In those moments, when practicality meets emotion—well, it feels as though we are spiraling towards a hot, explosive fire. We are failing.
Who is this boy?
He is so incredibly, horrifically rude you wouldn’t believe it. He tells me he hates me at least once a day. He shouts in my face to leave him alone, he doesn’t need me, I am the worse mother ever.
When he does this, I try to remind myself it’s not personal. You know, because of the medication and the autism and the hormones and all of that.
It’s not personal.
It’s not personal.
Or is it?
You know what it’s like? It’s like living with an obnoxious roommate who wolfs down all the food during dinner and then tells you that your meatloaf tastes like dirt.
This is an actual quote.
Over and over we tell him he isn’t being nice, that he is very rude. We take things away and we send him to his room until he can use his good words.
He doesn’t care about being nice. He isn’t concerned with being polite. Like a toddler screaming and crying on the floor, he only wants to be heard.
I hear him. Oh, do I hear him.
Since my Jack-a-boo was a baby, he never liked me to touch him. As he got older, he would offer me one arm if I asked for a hug, and every once in a while, out of the blue, he would rest his head on my shoulder. Now he won’t let me come close to him at all.
Where is my boy? Where is the tender 9-year old who stood at the counter every Thursday morning mixing batter for waffles?
Where is the chubby preschooler who wore blue shorts and a striped t-shirt?
Where is the quiet smile, the one-arm hug, the earnest face?
I miss him. I want to hold him in my arms. I want to love him and soothe him and know him, but he’s too far away from me.
I think I told you about the scripting, didn’t I? The way he memorizes long verses from songs and videos? Then he repeats them in his robotic voice, which would be kind of amusing if it weren’t so mean.
We have the worst. Family ever.
For the life of me, I cannot break through the canned phrases to get a glimpse of the child underneath.
Who is this boy? At times, he is a complete stranger to me.
I know that sounds ridiculous. I mean, I know the second his eyes open in the morning and I know when he doesn’t have socks left in his drawer because he starts the washing machine. I know his cuticles are red and raw because he bites them all the time and I know he loves the stuffed crust pepperoni pizza from Pizza Hut.
I know he is in there.
Or is he?
The thing is, I am scared that beyond this wall of stolen words and scripted phrases there is simply silence—a great, wide emptiness devoid of originality, or creativity, or humor.
I so badly long to know him, and yet whenever he wanders through the room to talk to me, my stomach clenches and right away I feel annoyed, because I know he’s just going ask for the bobillonth time what time his bus comes in the morning, or if he can pre-order the new Pirates of the Caribbean movie.
I am not proud of this—the stomach clenching. I know that I sound like a small, selfish shrew, with the ice-clinking and the sneaker-stomping. Don’t worry. You don’t have to hate me. I hate myself enough already.
I want you to know that all day long, I am dancing a delicate dance with an invisible partner. Constantly I have to decide when to wait, and when to beckon—when to lead, and when to follow.
I have no idea what I am doing.
Raising a child with autism, I say the phrase for now a lot. It is a song sung in the dark—a quiet prayer in the midst of the battle.
For now he is far.
For now he is angry.
For now he won’t let me near him.
One day, he’ll come back.
Anyway, I know I’ve already told you of all this. But I wanted to tell you again, because it makes me feel better.
Thank you.
October 2, 2017 @ 10:16 am
I’m so sorry Carrie. Puberty is hard for regular kids. For different kids, it’s a nightmare ride. At least that’s what I found. My daughter was 11 when she became violent and even more anxious. She’s 25 now. I wish I could tell you it was fine but it wasn’t. It was hell. You are going through hell and the best advice I ever read was, when you’re going through hell, keep going. It won’t last forever, even if it feels like it at the moment. Which doesn’t help you at all right now sadly. And for this I’m sorry.
Katie has been on antipsychotics and antidepressants for years with very little positive effects and lots of negative side effects. My daughter is nonverbal which probably helps. She never told me that I was the worst mother ever. She just grabbed me by the hair and dropped to the floor, dragging me along with her. She’s attacked me in public and she’s attack me in private. She lives in a group home because I wasn’t safe around her.
In March I started her on medicinal cannabis and that has helped the most of anything we’ve tried with her. She’s more relaxed and far less anxious. She even hums again, like she used to when she lived at home and was content in her bed at night. It’s a very good sound. She hasn’t hurt herself in awhile. I’m not afraid of her when I sit next to her in the car now. It’s better.
This must be so difficult for your family, for you and your husband, for you other children. My marriage fell apart but it wasn’t Katie, she’s what kept us together for so long. Don’t give up. Ask for help with Jack. You can’t and don’t have to do it all for him. And most of all, be kind to yourself.
October 2, 2017 @ 10:20 am
Thank you for expressing what I feel!
October 2, 2017 @ 10:46 am
Every week I think you can’t possibly get any closer to my feelings, hurts and worries but then Monday comes again.
October 2, 2017 @ 1:52 pm
Sending you strength and a hug Carrie. As Lily said beautifully, keep going. Thank you for sharing so honestly.
October 2, 2017 @ 2:05 pm
Please know how much you help and really touch all of us dealing with our autistic children. I have a 7 year old Granddaughter on the spectrum and my daughter and I share your joys and frustrations every Monday. Thank you for letting us know that we are all human and doing our very
best through all of the challenges day after day. Bless you!
October 2, 2017 @ 3:38 pm
Thank you for sharing. I get it.
October 2, 2017 @ 7:06 pm
I know you get sick of people giving you advice, and I don’t know you or Jack, although I feel like I know both of you since I’ve been reading your blog consistently for so long. The section here about him being rude and mean and your trying to communicate that to him made me think of Michelle Garcia Winner’s Social Thinking approach to working with people with ASD. If you are familiar with it, forgive the repetition. But if not, it may be a new and useful approach to try. The very basic core that it teaches kids is that 1) you have thoughts about other people and they have thoughts about you–and these may not be the same. 2) your actions affect the thoughts other people have about you and their actions affect your thoughts about them. 3) How they think about you affects how they treat you, and vice versa. So…if you want them to treat you in a certain way–ask you to sit with them, play with you, take you to the Japanese restaurant again–you need to act in a way that gives them good, positive thoughts about you. Of course it is very scaffolded and it has a lot more going on, but it might give you a few more tools for when you need to tell him “Over and over we tell him he isn’t being nice, that he is very rude. We take things away and we send him to his room until he can use his good words.” You say he doesn’t care about being nice, but perhaps he doesn’t understand why it is important. he may not know that being mean hurts your feelings, or even exactly what “hurts your feelings” means. he may not know that being mean changes the way you think and feel about him right then, or that those changes may affect your treatment of him (sending him to his room versus taking him to the restaurant again, for example).
I hope this comment is useful, and if not I at least hope you take it with the intention it is sent–with empathy for the pain and difficulty his anger is causing you right now and a wish to help make it better.
<3
October 2, 2017 @ 7:53 pm
Thank you for your thoughts! I very much appreciate a different point-of-view. I think you are right – being “nice” is a social construct Jack simply doesn’t understand enough yet.
October 2, 2017 @ 9:08 pm
I will say, once again, that you capture the experience of life for you with your family, in all its exquisite specificity and commonality. I am so grateful for this gift!
October 2, 2017 @ 9:22 pm
Thank you for expressing what so many of us feel. My daughter was recently diagnosed and I feel so alone and I have no one to talk to. I get so frustrated with her meltdowns and her stimming, I feel like I’m losing my mind sometimes.
October 2, 2017 @ 10:44 pm
I read your post and follow you because I seriously think of you as superwoman. I mean the superwoman that is real. I don’t have an autistic child – I don’t relate but I love the way you write and I follow you because I think you’re amazing. I can’t offer advice but wanted you to know that I admire you. The mother you are but even more the woman you are. So honest. I love that you tell it like it is. I know you’re helping others but you help me in other ways. Thanks for always keeping it real. ?
October 2, 2017 @ 10:56 pm
You are an amazing writer. I needed to read that after a very hard Autism day. Thank you so much.
October 3, 2017 @ 6:32 am
You told my husband and I once that these phases / behaviors / questions go on and on until you feel like you can’t take one more day and then there’s a new phase just as strange and taxing as the last but it’s new so you can tolerate it a little easier for a while. I’ve held on to those words MANY times. So far they’ve gotten us through. Noah’s only 7. In those 7 years I’ve wanted to bury my head in a pillow and scream innumerable times. Hang in there! You’re fighting a battle most don’t understand.
October 3, 2017 @ 11:25 am
A couple of things that have helped me understand my child better:
1. I realized how deeply her taking things literally affects all of her social interactions. So for example, when I would send her to her room for “being rude”, she indeed felt like I was being mean; after all, she just said the truth (yes, I have been told some of my food tasted like dirt). I have learned a lot over the years. Now, rather than taking away social time, I may ask if it was the texture of the food that made it “terrible” or if it tasted bitter. What could have made the food better? I explore. Usually, I tell her that because of my neurotypical brain, I need extra explanation and also that I find it fascinating to learn more about how she thinks and how she perceives the world. She literally learned nothing by time outs. She only felt sad, anxious, and ultimately angry. I do teach her about filtering what she says and slowly it is taking hold. However, I always tell her that I am glad that she brought up the point of discussion. For us, it is the only way to have a dialogue and to learn.
2. I started joining my child’s scripting, special interests, and some stims. Scripting is communication as is behavior. If a script makes her feel better and relieves anxiety, I think it helps to join in when appropriate. It sends the message that what she says is important to me, and it helps us bond. If I don’t think that a script is actually making her feel better, I try to figure out where the script came from and what was originally meant to be communicated with it (If it was a from a Disney movie, what was the character trying to achieve?).
If my daughter is acting out in an angry manner, I have realized that she is not getting the accomodations she needs. It can be a subtle, seemingly minor thing (even if it seems minor to me, it may actually be really important to her). If a person is frustrated over the same situation day in and day out, anxiety, anger, and ultimately a sense of hopelessness and despair may build up and escalate.
If your son is pacing the perimeter of a room and exploring the texture of the wall, you may want to try to join him and ask him what that feels like. If he seems to enjoy playing with the faucet, you may want to try to find a way to build this into his daily schedule at a time that is convenient for the parent AND in a way that it is socially acceptable and not causing a huge mess or water damage (maybe the bathtub; in the backyard if temperature allows; perhaps in the laundry room sink).
My daughter actually did become fascinated with plumbing. Watching some videos on how the faucet works may help as may getting a book on plumbing. If it is the water that is so fascinating, one could focus on water activities to get the splashing in the kitchen out of his system. Lastly, if it he is fascinated with how water can be a liquid and ice, there are some awesome experiments (YouTube has tons) that one could do.
Showing interest (even if one has to fake it at first) helped us bond and has helped with our child’s self-esteem. By asking questions and showing interest, we communicate that we truly respect our child’s differences (as in actions speak louder than words).
It has helped me learn about how she thinks and how she perceives the world, and it has helped her learn that she is indeed a good person with a good life ahead of her. It brings good vibes back into the home and has made all of us much happier. I also realized that understanding my child will come from shared experiences because explaining herself would be way to complex.
3. One more thing that I learned. Even if my child does not show it, she hears and sees way more than we think. Having a sad, annoyed or bored look on one’s face or a raised voice or a whispered complaint to a family member is usually taken in by her and, without further discussion, may be interpreted as that we don’t really like our child the way she is. And as much as I enjoy reading your blog, I do not know if your son reads your blog, but if he does, I wonder how he feels about reading about himself and your feelings and the marital stress. It may be worth exploring if reading the blog could be contributing to his behavior.
Things will work out. You seem to be a loving and caring mom who can be very tough on herself. Please focus on all your good qualities. Life is a learning experience for all of us. I don’t know where I heard it, but someone said (and it has helped me deal with guilt over things I think I could have done better):
If you knew better, you would have done better. Now that you know better, you can do better.
October 8, 2017 @ 2:59 am
You are an amazing mom,doing the best you can with a child who needs so many things you can’t anticipate. Job well done. Keep fighting the good fight.