Wednesday, October 3, 2012

I'm just gonna say it... sometimes I HATE autism.

If you know me, then you know I'm a pretty upbeat person most of the time. But lately (and by lately I mean the last few months), I feel like I'm so far down that I can't get up. I feel like each day I go to battle against something I can never defeat. Some days I win the fight, but in my head I feel like I'll never win the war. I'll take two steps forward, and ten steps back. And then I wonder to God, why?? Why did this happen?

I start thinking about how our lives will never be normal. How much I wish we could just experience one day without an autism meltdown. The dreams of fun-filled family vacations no longer seem realistic, because I know that the "fun-filled" part will end two minutes after we try to transition into the room. That Jason and I will become agitated and mad and start regretting that we ever left home. But home can be like a prison cell. It's the only "safe" place... far away from the stares, the humiliation, the anxiety. But when you feel like you can never leave your house you start dreaming of a life that's different.

Because not only do we experience the normal wear and tear other families do... the two full-time demanding jobs, the never ending laundry and house upkeep, the bills, the homework, lunches, and so on and so forth, but we have to add in the struggles that every autism family deals with. We have to stay on the same routine DAILY. Any alterations can mean a meltdown. JD asks me the same question hundreds of times within a week span, and by Friday I no longer take the time to answer, I just cover my ears and want to scream. We watch the same TV shows each day, he eats the same food each day. He screams if I don't sing him to sleep at night and they have to be the same songs in the exact same order. I'm still singing Christmas songs from last year and it's October.

What scares me is that I'm only two and a half years into this and sometimes I feel like I'm ready to hang up the white flag and declare defeat. But what does that do for him? Absolutely nothing. I can throw in the towel, or keep waking up day after day and try again. I have to keep it in perspective. It could be worse - a LOT worse. So I keep thinking to myself... maybe tomorrow I won't end up in the bathtub crying after everyone in the house is asleep. Maybe this will get easier.


blackenpot said...

Keep Strong, I know thats easy for me to write as I am not in your postion. Ther will be a light at the end of the tunnel. I have your whole family in my thoughts.

Take care.

Mindy said...

i've never commented before, but boy can i relate to this post. lately i feel like i am drowning in tears. my son is 4 and we are 2.5 yrs into this journey & i just don't know i can do this for the rest of my life. i love my son more than anything, but everyday i ask "why me?" "why him?" and while i agree i can be much worse we have only one child & well life is just hard. i'm sure you are doing an amazing job & like try to tell day at a time :)

Anonymous said...

Thanks for writing this post. I feel the same way some times. I'm avoiding getting my son out of bed despite him making "beeping" sounds over and over at 4a.m. He wakes up at 4 everyday only to make car sounds until 7am. For breakfast he will only eat plain oatmeal. I once added raisins and that was a big mistake.
The line about wishing or dreaming of another life sounds very familiar. Glad to know I'm not the only one.

Heather said...

Hi I'm Heather! Please email me when you get a chance, I have a question about your blog! LifesABanquet1(at)