When Autism Changes You

I have taken a step back from blogging in recent weeks due to the internal struggle of my emotions. I normally put on a strong face, but autism has kicked my ass recently. My son is my world, and I wouldn’t trade him for anything. However, his behaviors and needs are draining and to be honest, heart-breaking. I have recently felt a funk overcoming me. Taking over my body and mind. I have become less patient, less understanding, more angry and tired. This is not me, this is not who I am, and I am sorry if you cross me on a bad day. I don’t feel sorry for myself nor do I seek sympathy from others, I just want to be “normal”. I want to live a life where I do not wake up each morning hoping for it to be a good day for Leo. Hoping that my son doesn’t crack his head open, hoping I can use the restroom without having to run to my son’s attention when I feel the thumping of his head hitting the floor from the other room. Hoping that I don’t have to leave the house to battle my son in and out of the car seat or publicly manage a meltdown. Hoping that I don’t get abused by my own child who is not even 2 years old yet but is almost stronger than I am. Hoping that my husband gets home from work early so I can have a breath of fresh air and quite time, even though we need all the hours he can get. Hoping that my son will nap without abusing himself and hours of back and forth. Life has become more of a fight for sanity and peace than anything, and my son is the one who suffers the most.

I see kids Leo’s age, even younger kids sometimes, and think how wonderful life might have been if Leo was “normal”. Parenting is not easy, and I by no means think that other parents have it easy. I just wish at times that their struggles were my only struggles. Leo has never been easy or “normal”. What makes it worse is when some people try to talk to me or makes comments as if they have walked in my shoes. I will admit, my son has strengths in some areas that other kids have weakness in. Everyone also thinks the grass is always greener on the other side. Everyone has their own struggles and by no means do I think they have it easy just because their child is not special needs. I just wish one person would say to me, “wow, that is some fucked up shit you have to deal with. Good luck momma!” instead of trying to make it seem like it is better than I make it out to be. I like to be a positive person, and I usually say I don’t like to be around negative people, but autism has turned me into this negative person I do not recognize. Autism has changed me, in a bad way. I can only hope to work on it, change my perspective on life and what I have. I have a roof over my head, food in my stomach, nice clothes for myself and my child, nice things and luxuries like a nice car, a cell phone, TV and internet, and everything my child could ever want. I really shouldn’t be complaining. Many people have it much worse than I do. But it is difficult to see the beauty in what you have when you are beat down and challenged every day. I hope to change that about myself and be happy again.

If I seem rude, I am really sorry. It is not my intentions to ever be rude to someone or act in a way that is negative. Many people message me giving advice and ideas for my son. I really do appreciate the amount of love and support, and the time you take to reach out to me. But its very draining. Chances are, anything you recommend I have already tried or am currently looking into. It makes it more difficult when my child is compared to a neuro typical child, or one who is less severe. This is something I have a very hard time with, and it is my own personal struggle I need to overcome. I am in a stage of denial, even though I do not deny my son’s autism. There have been times in the past that I wondered if his diagnosis was correct, but now I have no doubt. I never thought this would be me. I never thought that I would have to battle autism everyday of my life. I never actually knew what exactly autism was or how it effects the person with it and those around them. I have one request, for everyone who knows and loves Leo: learn more about autism. Learn more about sensory processing. Watch videos and vlogs on youtube to better understand what goes into the daily life of a severely autistic child. Not Asperger’s, not sensory processing disorder, not ADHD or OCD. Autism, classical clinical autism. Please don’t compare my son to others. My son is not your cousin’s wife’s sister’s daughter. He is his own person with his own struggles with a future that is not predictable. Just because Jane Doe grew out of aggressive behavior and went on to be a high functioning autistic adult does not mean that is my son’s future. So far, my son has shown worsening behavior while progressing in other areas. We did not see the behaviors coming, and they came on so quick and unannounced. If you have met one person with autism, you have met one person with autism. They are all different and have different struggles and strengths. With the difficult decisions that lie ahead of me, I can only hope that I am making the right choices. This has been the most difficult and challenging time of my life. I have never felt so stressed and worried sick, becoming nauseous over the thoughts of what life is about to be like, ever. I have been through a lot in my short life so far, but this is by far the most difficult and draining path I have ever walked down. I can only hope that those around Leo will support and understand him. Get to know him and not criticize or look down on him. He is just a boy, with a heavy title. Autism does not define him. It does not define me. It just makes life a hell of a lot harder to navigate through. I hope to turn this page, to brighten my spirits and gain happiness and positivity that my family deserves from me. Help me do this by just understanding.

3 thoughts on “When Autism Changes You

  1. Huge ((hugs)). It really is such an unfortunate thing that we can’t truly connect with other parents because OUR child’s needs are so UNIQUE and our experience is not their experience so that connection we look for is a bit fuzzy. I was watching Finding Cooper’s Voice on YouTube last night (she has a non-verbal eight year old son, if you hadn’t heard of her) and the stuff that she was talking about…how sad autism can be, how tough it is on the caregiver…I don’t know, it was helpful because I feel like those things aren’t said enough. Maybe most kids are “easier” or something but I have felt like I’m not allowed to say, “This sucks! I want us to be happy!” My life is genuinely hard and I have PTSD from some of the things I’ve gone through with my daughter.
    That all being said, I think it’s really important to realize (and I heard this many months ago when I was in a BAD state and it helped me) that no matter what your child is like today, they WILL be different in a year’s time. They WILL change. That doesn’t mean that there is a guarantee of improvement, it’s just about things evolving and changing. As time passes, they do change. Even if some behaviors stick around, they will be a different child than the one we currently have. For some reason, knowing I wouldn’t be dealing with exactly the problems I was facing at the time I heard this gave me so much comfort. And what’s awesome is that it was true!! My daughter (3) is not the same – not by a long shot – than she was a year ago, or even six months ago. And thank goodness because my mental health couldn’t have handled it. 😥
    Anyway, I know you weren’t looking for advice, my heart just hurts for anyone going through the pain that autism can bring. (((hugs)))

    Like

    1. Valarie,
      Thank you for sharing that! It is definitely hard, especially when you feel like you have no one around you to relate. I have also seen finding coopers voice and it is a channel I visit often to get some frustration and anger out through finding comfort in similar struggles to know I am indeed not alone. I feel us parents hear that a lot, “you’re not alone” but it is not helpful to hear that until you actually see and hear the stories that prove you are indeed not alone. Thank you ❤

      Liked by 1 person

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