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I want it to stop

Wednesday, May 8, 2019

I don't even know how to start this post because my mind is that scattered. I'm emotionally and mentally exhausted. I feel like I've been on a roller coaster of emotions- we'll have a couple of good days and I start to feel like I'm getting a handle on things. And then days like yesterday and today come and crush all of those warm fuzzy feelings and leave me on me knees, in tears, feeling like a horrible mother. It's crazy how quickly we can go from one extreme to the other in just a matter of a day or two.

It's only been a couple of months since my sweet boy was officially diagnosed with autism, but if you've been following along on this journey (mostly via my Instagram) you know we've been in the thick of this for a while now. I'm at the point right now where I can officially say that autism sucks. I fucking hate it you guys. It's so hard. It's stealing all of the joy right now and sucking the life out of me and I just can't stop asking WHY. Why is this happening? Why can't my baby just be "normal"? Will it ever get easier because right now it's taken over our entire lives and everyone is miserable.

I've read articles where people say their child's autism is a gift. A gift? Really? That couldn't be further from the truth for us right now. I hate that he has it, or that it has him. It's not fair. Why can't he just talk? And play like every other kid?


Josiah just started his fourth week of ABA therapy and I've been selfishly enjoying the time away from him. It's been my only break and it's been really, really good for me and my mental health. I haven't had time to myself in years. Dealing with autism 24/7 has been wearing on me and I hate the person it's made me become. I hope it hasn't changed me forever and that it's just a temporary stumbling block as I try to figure out how to best help my baby boy and how to not let it torpedo my entire family. Because right now we're all feeling pretty defeated.

ABA therapy isn't some magical fix for Josiah's autism. In fact, his behavior has gotten worse, which we were told is normal. The screaming and overall frustration seems to be at an all-time high right now and everyone's nerves are just shot. I feel bad for everyone- him, me, my husband, and our other kids. It's not fun living in a house ruled by autism. My poor kids have an aggravated, grumpy, touched-out mom and a brother who screams at everyone about everything and who hogs up all of the attention and energy of their mom and dad. Everyone has to take a back seat to autism because screaming and crying usually takes precedent over pretty much everything. It's unfair, but that's just how it is.

So my other kids are often left to fend for themselves and it makes me sad. Today I barely had time to say hi to my preschooler, Harper, as she hopped off the school bus because we had to rush out the door to pick up Josiah from therapy, then rush to a preschool evaluation for him. The evaluation was a train wreck and we sat there for about 15 minutes in a tiny, hot room where he screamed and threw his shoes until I finally told the teachers "we gotta go." I had to carry him out kicking and screaming with Harper also in tow. When we got home it was another 60 minutes of full on screaming and crying and me trying to calm him down and get laid down for a nap...all the while Harper still hadn't gotten any attention from me at all and she'd been home from school for over 2 hours. Every second of it was dedicated to Josiah. She wanted me to make her lunch and fill up her pool and come outside with her, but I was too busy dealing with Josiah and his tantrum.

Once he finally calmed down, I realized Harper had scavenged for food by herself (a Gogurt and a banana- not a bad lunch). It was only then that I could finally ask her how her day was and let her talk my ear off like a normal preschooler should. It made me sad. I lose so many precious, normal, everyday moments like this with my other kids because my attention is always somewhere else. When they do get my attention I'm usually annoyed and rushed. They don't get the full me...ever. I wish I could give them the me that I was a few years ago.

Before I had a kid with autism and everything changed. When we could go out to dinner together as a family or to a movie theater, amusement park, or hell- anywhere. Because we don't get to do those things anymore. We haven't eaten in a restaurant in three years. We all live in fear of public meltdowns and don't want to be screamed at so we just don't do those kinds of things anymore because it's too hard. We go, it ends disastrously, and we all end up bummed out when we realize how many seemingly "normal" things just aren't doable when you have a kid with autism in the family. 

I look at my sweet boy, who will be 3 before summer's end, and I want so many things for him. I want him to talk to me...to call me mommy, ask for more milk, tell me he loves me, or let me know when something hurts or when he's afraid. I want him to go to school and make friends and ride the school bus and to be able to tell me if he had a good day or if someone was mean to him. I want to protect him from anyone who might take advantage of his vulnerability. I want him to be independent (one day) and not need me forever...but if forever is in store for us, who will take care of him when I'm gone?

I want answers to all of my questions but I know many of them will have to wait. We have to take it one day at a time. One painstaking day at a time, where I go to bed in tears because I just want it to stop. I want to undo the autism and I just want my baby back. 


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Melissa Swenson and Lulu & Sweet Pea