Autism and Changing Behaviors
I recently read a study that found moms that have children with autism, have also been shown to have stress levels similar to combat soldiers.
I have felt this for years but I could never admit it. If I admitted that I couldn’t handle Cooper than I was admitting he was severely autistic. Admitting meant defeat. Or failure. There are a lot of emotions that go into asking for help.
I am strong. Seriously. This blog is the ONLY place I break down. Not in real life. Not to friends. I get up every day and handle what is thrown at me. In saying that, I completely and utterly waved the white flag this weekend.
Autism won. I had lost. I admitted my defeat.
Just when I get a handle on Cooper’s autism….he changes. It’s been happening that way for 5 years. Just when I think we are getting ahead something happens. A new behavior. A new quirk. Or, like this past weekend, it all happened at once. And not slow. Cooper can completely change overnight to the point that I don’t even know who this kid is.
One week ago Cooper woke up and started hitting. Just like that. He went to bed not hitting and he woke up hitting. And throwing. And pushing. My sweet boy went to bed and a little monster woke up.
By Monday morning at 6:30 am I sensed something was different. Just like that he started hitting me and his brother. Not hard. Not aggressive. But he was clearly hitting.
At Monday afternoon pick-up from Fraser I was asked to stay after and discuss his behavior. Hitting and throwing were discussed at length. By Tuesday at noon I had the same observations from his preschool. Of course I knew this was coming. I felt it. I saw it.
Cooper had changed over night.
Tuesday afternoon his ear started draining. I brought him to urgent care and he had a clear cut ear infection.
Thank God I thought. This explains the behavior. He is in pain. He is hurting. He can’t speak so he is taking it out on me. I get it. I had an answer.
The doctor prescribed ear drops and a promise he would be better in a day. Except it didn’t get better. It got worse.
By Wednesday his ear drum had officially ruptured. He was alone on a van to downtown Minneapolis. When he got to Fraser his face was a bloody mess. This is the third time in the past 3 months that his eardrum has ruptured. Yes, he has tubes. He is on his second pair.
By Thursday the ear hadn’t stopped draining. He wasn’t sleeping…at all. I wasn’t sleeping. He was like a wild animal when I went near his face. He clawed me and hit me. The ear was red and swollen.
I spent the night thinking about how I am failing this child. I started to panic thinking about his quality of life. He has chronic ear pain although his pain tolerance is unreal. He can’t poop. I spent the night making a plan to get him help. I was going to march him into the doctor on Friday morning and demand help. I was going to find answers if it killed me.
Friday morning we went into the doctor. I was fueled by caffiene and sleep deprivation. His ear was a mess. He was a mess.
He tore the waiting room apart. He ran back and forth knocking over chairs, throwing books and magazines, shrieking and shouting. Think about a wild animal. That was happening. After 10 minutes of people staring I begged the front desk people to put me in a room. I didn’t care if it was an hour…put me in a damn room.
The room was worse but at least we were alone. He threw coats, knocked over chairs, flipped the light switch on and off, on and off.And he hit me.
Here is a short video. Notice that he is laughing the whole time. The behaviors are not aggressive…they are silly. He is looking for a reaction. With the reaction of me ending up in a padded room. I’m on my way.
https://youtu.be/sRUSSi-lAA8
By the time the doctor came in I was a complete and utter wreck. If you were a fly on the wall you would have seen a shell of a human being hit by their 5 year old. I had zero control.
And I completely and utterly unloaded on this doctor. I said I needed him to help me. More like, ‘please help me. I am losing it. I can’t control this child anymore. I don’t know what is wrong. I’m failing. I am waving the white flag. He can’t poop. He has chronic ear pain. There is something wrong. Please help me.’
During this epic speech I was holding Cooper because he was so out of control. He was intermittently hitting me in the face. Or attempting too. I just kept talking. I think I said the phrase, ‘help me’ at least a dozen times.
And then this 250 lb, 6’5 male doctor patted me on the back and said something so comforting to me. He said, ‘I hear you. I hear everything you are saying. We will fix this and I will help you do it. You are going to be OK.’
Not, Cooper is going to be OK. He said I was going to be OK.
We went home with a plan. Nothing groundbreaking…but it was a start. Oh, and Cooper’s ear infection was something crazy. They cultured it since it wasn’t responding to medication. Ugh. This kid.
I waved the white flag on Friday.
I need help. I am admitting it. It took me five long years to get here. I need to hire someone. I need someone to come in my home and help me. I’m not sure if that is a nanny or a PCA. I don’t know what it looks like yet. I just know that I can’t do this anymore. I am not a nurse. I am not a psychologist. I wasn’t trained in caring for an autistic child.
I am just a normal mom. Asking for help is not admitting failure. While yes I am defeated…I have not failed. I just need help. It’s OK to ask for help people. Don’t forget that.
Asking for help is one of the hardest things to do for some reason. Why do we feel we have to do it all, all of the time? You need respite. You have to take care of you. An empty vessel cannot keep pouring out.
I am sending you oh so many hugs.
I think it makes me feel like I’ve failed. But why kill myself? It’s not like I’m going to get a medal or something. ? hugs to you too!
I get it. I go through the same thing, and I feel guilty for needing time for myself. We are not Wonder Woman. We don’t have to be. We are normal human beings under an immense amount of stress. There should be a medal though. I think I’m going to talk to someone about that…medals for autism moms/special needs moms. We’ve definitely earned them!
I think about you and Cooper (and Sawyer!) and I keep you all in my prayers. But what feels better than moral support from afar is an action plan in your hand. Go team Cooper! Go team Mom!
You write so well, and so clearly and from your mom’s heart. You are not failing! Being a parent is the hardest job we ever get to do on our best days, and on the less than best days?? We still get to do it. It’s an honor and it’s a crushing responsibility at once. I don’t for one moment know how it feels to be in any other mom’s shoes, but no one _doesn’t_ need help! Keep asking, and keep sharing, and then keep asking.
It is ok. I reached this very same point a few months ago too. The fact you can admit it is so brave of you. You are human and you can only take so much.
Just know you are NOT alone. Even when you think you are. Another mom across the ocean is loving you, praying for you and cheering you on. ((Hugs))
I hope I’m not overstepping, but have you ever looked into working with a naturopath for Cooper? My daughter has apraxia (you probably remember me) and she has been seeing a naturopath that specializes in developmental disorders. One of the first things he fixed for her was her chronic ear infections. She was getting them every month and now hasn’t had one in 6 months. Her eczema is gone now, her speech is improving a faster rate, I could go on and on. Anyway, email me if you want any info on this subject. Take care. sheilatufano@gmail.com
Hoping you get the help you need. I’ve been there. Actually had something very similar happen to me in q doctors office with my son. Sending prayers.
Hugs…. Well that sounds extremely sucky… But you Gotta know you are not failing your son when you admit that you feel like you’re drowning and you’re in over your head. It’s exhausting trying to react to re-learn and try to be the best parent you can. But it’s OK to also take a step back and realize you have to take care of yourself too. A friend of mine who has an autistic son as well she always says to me remember that parenting is not for the faint of heart and when you have a child with autism it’s like parenting on steroids. You know your family you know your children you know yourself and trust in that. Rearrange your life the way it works for you and don’t care what anyone else thinks. Another mom told me that a lot of times with developmental changes that it’s like a slingshot…. With any movement forward you have to pull back I need dive into some craziness and then the slingshot releases. It’s that movement back when you get into all these behaviors that is so hard to navigate… But I have to say I’m going to share seen a story about a little boy that’s the age of my son who has been completely nonverbal who uses an iPad to communicate and has had some stellar meltdowns on the school bus… I am absolutely shocked at how he tries to interact with the kids as they get on the bus now. It began the first aid back from Christmas holidays . He reaches out and takes my children’s hands and tries to look them in the eye and tries to say hi. I was so shocked when I saw it happen for the first time on the first day back to school. In the months previous he’d be the loudest kid on the bus stimming tossing things etc. Now he has to make a connection when we get on the bus. So I was so used to for the last three years seeing so many behaviors and he just taught me that never give up the kids are constantly changing and you just never know when you’re going to see a big change. Hugs
This is great. Many could relate on this, including me. Thanks for the video also. I realize more about on changing behaviors of my children. My conscience is hunting me a bit now.
I hear you. Only thing that helped was adding lots of oils and fat…animal fat to the diet. Home cooked, crock pot, whole chicken, butter and veggies slow cooked together. That cured my boy’s constipation. Lubricate his system. Good luck.