I usually write my blog posts with greater thought.  Tonight, in the middle of the night, with Dayna yelling, I decided I wanted to dump everything on my mind at once.

Autism is winning.  Winning the race, or maybe the fight, I don’t know which it is.  Either way I’m realizing that ‘slow and steady wins the race’ makes complete sense, unfortunately I’m not the one who is winning.

Autism is winning.  Dayna will be 17 in a couple of days, which makes for 15 years of triumphs and struggles since we found out she has autism.  But lets be realistic.  The triumphs often feel like small steps that everyone can use to say, “She is doing so much better!” or “That’s a lot better than she was doing before!”.  Meanwhile behind the scenes, the struggles continue to mount, each day.  You smile because everyone is trying to make you feel better, all the time knowing that you wont feel better at some point soon.  I’m sorry, of course I want to be happy that Dayna sleeps better during the night than she ever has.  And I am.  But that does not mean I am going to walk around with a smile and talk about how great things are when for the second time in a few days she is up at 3 am in the morning.  Letting out screams and repeating in rapid fire succession “WHEN YOU WAKE UP IN THE MORNING!!!”.   Call me selfish, but I want things to be normal, and deep inside I know that will never happen.  I HATE always complaining, I HATE always bitching about it, but I’m tired, and I hate that also.

Autism is winning.  I know there are people that have it worse.  I know there are kids out there that need more care or are more difficult to take care of.  But there is only so far that can go.  There are worse disabilities, worse health conditions, worse problems.  I know this.  But this is the one our family is dealing with, its what I am concerned with and I just want it to be better.

Autism is winning.  Winning and wearing me down.  I have lost a lot over the past couple of years, couple of months, couple of weeks.  I can’t help it anymore.  It consumes everything I think about, it consumes my life.  I want to be strong for Dayna and my family.  I want to be calm and reasonable.  Either I’m weak or its impossible.  Two times this week she has been awake in the middle of the night.  Sometimes letting out screams, sometimes talking in repeated phrases.  There is only so much I can take before I find myself screaming back “GO TO SLEEP!!!”  I know it doesn’t help, I know she doesn’t understand, and I know I will wake up in the morning feeling weak for letting it get the best of me.

Autism is winning.  I write this blog and I sometimes look back and think, “stop whining and complaining” and “you’re not the only one with this problem, stop being so weak”.  I know I’m not the only one and that we as a family are not the only ones.  If anything, I hope that this helps to show that others like us live the same way, feel the same way.  Or maybe they don’t and I’m in the minority.  Maybe they are winning the race.  What I do know is that I can tell you that I know I am not.

Autism is winning.  The numbers keep growing, but there are no answers.  Expenses keep piling up but there are no supports.  Needs keep getting larger but there are no resources.  There is an epidemic, but the world is more focused on Twitter and the news cycle.

Autism is winning.  It has taken a huge toll on us.  I have no more house that I own, no more savings to fall back on, no more retirement to look forward to.  I wake up everyday trying to make it to the next for Dayna and the rest of the family.  I’m not going to pretend we are living on pennies in a double-wide on the side of a highway, but I struggle everyday to provide what we have and there are times when I know it could all crash down in a flash.  I don’t even know what I can do anymore for a living that will support us financially while also being able to support Dayna.  I’m tired of hiding it, and I’m tired of being embarrassed by it.  But I am mad at myself for not being strong enough to beat it.

Autism is winning.  But tonight, I was able to outlast Dayna.  I sat near her room until she was asleep.  While I sat here I picked up my laptop and put this all down on the blog.  I was able to put whats bouncing around in my head into writing, in raw direct fashion.  Hopefully I was able to give you insight into whats on my mind, and maybe whats on the mind of other autism parents.  Hopefully I was able to make you not pity me, but understand what so many autism parents around you that are dealing every day.  Hopefully you will remember this when they look worn down as well.

If I was able to do that, then tonight, I won.

 

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4 thoughts on “Autism is winning

  1. Thank you for saying what i feel everyday. I am the mom of 2 young autistic boys neither one sleeps through the night ever. So power to the sleep deprived.

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  2. I can’t even imagine! It is totally ok to feel defeated. Autism is a thankless life sentence of care taking that has no desernable end. You don’t complain, you share insight. I have known you since before Dayna and have read every blog. Please know that to a “normal” family like us, you and Deb are nothing short of the most amazing parents we know! Not because you are “winning” against autism or because you have it all figured out but because the love for all of you kids is so obvious and your family unit is surviving and thriving despite the autism! Even Dayna is thriving because of your love and dedication! Yeah people have it worse out there but few families out there that so openly and honestly surviving and thriving with such love! We love you guys and just know that it is ok that you are not winning right now. I do wish you a good night sleep and the sense of winning soon!!!

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  3. You won! I understand. The last two month has been overwhelming and Holding is not at home. I worry, I cry, I take it out on other people, I am disappointed in myself.

    Sometimes I hate hearing people’s positive comments. I think if my child was “so good” he wouldn’t be in a group home.

    I hear you. I understand…

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  4. Another powerful insight into what having a child with autism is truly like. Thank you for your candidness and willingness to share such personal details of your lives. You are such a beautiful family and your love for Debbie and the kids is obvious, even during the rough moments. Keep writing.

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