I'm Sick of Autism Now
I spend a lot of time trying to decipher between what’s normal boy behavior, what’s normal 3 year old behavior and what’s autism. I sorta have this need to know that their are different parts. Trust me, I get that it all runs together but for my own mental state, I tell myself that he isn’t just autistic. There are other parts. But as he gets closer to 4 it’s getting harder to decipher.
I am so sick of everything being so dang hard. I just want to be carefree and relaxed. I don’t want to always have to be 3 steps ahead. Or be weighted down with worry. I am so sick of it. And there is never a break.
School starts in 6 weeks. 6 more weeks of daycare and worrying nonstop that one day I am going to pick up Cooper and his daycare provider is going to say that she can’t handle a nonverbal autistic boy anymore. She hasn’t given any indication of that but I know it could come at anytime. Our interactions are even a bit strained lately. For the longest time when she would tell me about Cooper’s day, like throwing or not eating or not participating, I would always apologize. It was the only thing I knew how to do. I felt like each comment was being piled on top of my shoulders and I honestly didn’t know what to say besides, “I’m sorry…we are working on it at home.” And then I would ride home with either Cooper screaming or in silence and I would cry most of the way just wishing he would tell me about my day.
Now, when she tells me these things, I just smile and shake my head. I don’t apologize anymore. I can’t. I can’t change him or fix it. She loves Cooper and he loves her and I just need to get through these next 6 weeks and onto my next worry. “What if I have the only child that school doesn’t help?”
Last night I convinced Jamie to go out for dinner. He argued with me that he would only go if it was take-out and if we could leave the boys in the car while one of us ran in and got the food. It annoyed the hell out of me even though I knew he was right. We ending up going to a new place and neither of us knew the menu so we all ventured in. I saw a BIG line and my stomach freaking dropped. Cooper doesn’t do lines. He doesn’t do waiting or patience or quiet. And I know that the worse Cooper acts the more frustrated Jamie gets and the more stressed out I get.
It didn’t go well. Imagine holding a 40+ pound wet noodle who thrashes at the waist. And try to act natural while doing it. In the 10 minutes we waited, Cooper alternated between Jamie and I 4 times, which meant passing Sawyer back and forth as well. We made it through the line but we were exhausted afterwards. It’s like weightlifting and cardio at the same time. I hate it.
On the ride home we talked about how we won’t be able to bring him into places once he gets to big to hold. That’s a really scary thought. It actually makes me feel claustrophobic as I type this.
Maybe I’m not one of those strong autism moms. I guess I haven’t fully embraced it yet…even though we have been living it for 3 years. Autism makes me want to hide. It makes me scared and worried. And I’m just plain sick of it.
I’m sick of pillows being thrown on the floor and my furniture being pushed all around from being ran into. I’m sick of Cooper throwing all of the toys and deck furniture off the deck. I’m sick of hiding the remotes and unplugging the TV. I’m sick of teaching and fighting and walking on eggshells in my marriage and overcompensating for Cooper’s behavior. And I’m so sick of movies being on ALL day and waking up at 5 am to put cartoons on. And I am SO SICK OF THERAPY that isn’t working. And most of all I am just so tired of everything being so hard.
Let me end by saying that Cooper is the love of my life. ALL OF HIM. Without a doubt. But, God it is hard. Yesterday I missed him nonverbally telling me that he peed through his diaper. It was 4:57 AM and he laid on the floor and put his legs up in the air. My eyes weren’t even open as I pressed play on the DVD player and I walked to the couch to lay down. Cooper melted down in less than a second and it lasted 10 minutes and woke Sawyer up. It’s just hard. And then I think, why is my life so hard? And then I tell myself to suck it up and that it could be a lot freaking worse.
And a little reminder for myself and all the other mama’s of nonverbal kiddos…
I understand so much what you are going through. We are still waiting on a diagnosis and have our appointment coming up in Nov. We have had to wait over a year which has been excruciating. We are lucky, we have been able to take her out to places and she does fairly well as long as it is something she wants to do or we can keep her occupied. I was much like you always apologizing for her behavior. Last week she had a particularly hard time at school. She was in the library did not want to go to OT, when the teacher tried to make her go, she bit and slapped the teacher! I was mortified! There are other times when she is so sweet, and loving and other times she seems angry and frustrated. She communicates in phrases and single words. Every day when she gets home from school I ask her how her day was and am mostly met with silence. My daughter gives you a false sense of security and when you least expect it will do something random with no explanation. Since she is our only child, I am constantly trying to figure out what is normal 3 year-old behavior and what is related to her delays.
Thanks for being so open and talking about your son. I am always checking in to see how he is doing and your honest writing on the subject is helping me come to terms with some of my own feelings on this. I am very nervous about the appointment in November. I am not sure why as like you said in a previous post the diagnosis really doesn’t change anything. I am just having a hard time accepting and processing all this. God bless you and your son. You are great parents who are doing everything you can for Cooper and the end of the day Cooper is who he is and my daughter is who she is and we love them with all our hearts. Much love and hugs to you!
Hugs to you too! I am so glad I can help you. This blog is the only place I can really be honest about how I feel. And it has saved me.
My heart just breaks for you – but I’m glad you hate it all right now, I think that too many people dismiss that emotion when in fact it is a very real emotion! I think that I would hate it all too! And, I’m pretty sure that no one said you had to love it, no one has ever said that you have to be the calm, serene, handle everything your Autistic child throws at you parent – and I don’t think it’s fair to attempt to compare yourself to that parent either. Different paths, different journeys and all! Today, I’ll embrace your hate! 🙂
You may find this perspective comforting: http://emmashopebook.com/2014/07/24/alone-frightened-worried/
I hate autism too. Don’t feel bad for feeling that way. I actually was crying in my car today thinking about the fact that Mason will have autism his whole life. And he was diagnosed a year and a half ago. The grief comes and goes in waves-at least for me. Sometimes I think “I got this” and I feel like the big bad autism mom and then the next day I am a wet noodle. One thing I know though is that society is starting to become very accepting of children with autism. There was a movie screening for Planes 2 in my area specifically for kids on the spectrum. I took Mason to the movies and it was stress free. He could get up out of his seat, everyone was being super loud, they did not dim the lights, the sound was not that loud. A lot of museums in my area have special nights for kids on the spectrum too. It seriously makes taking Mason out non stressful because instead of the “control your child look”…you get the “I know your pain” look” and probably a smile. You should look for things like that in your area. I am also scared about when Mason is big and I cannot hold him. I kind of want to hold onto these years as tight as I hold onto him. <3
Oh, mama!!! I’m sending you THE biggest hug right now. You are an amazing mom, without a single doubt in my mind. I used to apologize for Willow’s behavior at family events or even to strangers in the grocery store, but now I just smile and keep going. Sure, things could be a lot worse, but you know what? It sucks. No need to try and minimize it. It is your struggle, it is Cooper’s struggle. It’s been a long road for you and I hope things start to look up soon. Cooper is so lucky to have a mom like you…don’t ever forget that. xo
Thanks lady! I hope you are doing well!
And also, that quote you included at the end is perfect.
Big hugs, mama! You are amazing!!
Thanks!
I’m so happy to have found your blog. Autism is different in all children but it sounds like you are having very similar experiences to my own. My son is 4 I still have many days like this and many days that are amazing. Actually almost every day is like a seesaw or a roller-coaster of highs and lows. Going to a peer supported preschool program has helped him a lot with structure and finding his voice. I hope it helps Cooper as well. It never really seems to get easier, we just seem to adapt to dealing with it better and try to find the humor in every situation. It’s also compounded by not really knowing which behaviors are the autism aND what’s just having a kid.