Monday, May 13, 2013


But this is not the mothering I signed up for. So now what? Exactly.

But everyday is such a roller coaster.  No amount of warning could of prepared me for the up, down and all around.  It wouldn't of mattered.  I wouldn't of believed it anyway.

But I got to remember he's trying his best.  He's trying to handle being parented by a neurotypical mom.  Well, let's be real.  I'm sure my little ASD apple didn't fall far from this quirky tree.  Either way, here we are. Trying to figure each other out while trying to figure our own selves out too.

But I have to have hope.  He's showed so much progress in the past two years.  I often immediately thank his teacher for it.  She's had A LOT to do with it.  She just gets him and I will sob my heart out when he moves on from her room at the end of this school year.  I wonder if she knows in my head I think of her as my BFF.  That's kind of stalkerish? Is that a word?  It's in print.  It is now.  But really, how could I not think of her as a good friend when she's made such an effort to help my son.  Nothing could of prepare me for that.  When someone non related and in a paid position seems to love your kid in a special way.  Damn, that's good stuff right there.

But I also have to be realistic.  For as much progress he has made we still have so much more to do.  It's daunting and I fear some goals just won't ever be achieved.  Sometimes it just smacks me in the face out of no where.  I'll be doing something like the laundry (which I am always doing) and I will think "He won't ever get married.  I'll never have grand kids."  I don't know this but there is a damn good chance that's the case.   Well I guess I'll just have to be that eccentric old great auntie to my nieces and nephews kids.  Won't be the same but what else will I do?  Exactly.  Adapt and move on.

But then he's proven me wrong so many times!  To the point where I think he does it just to mess with me.  I love those times.  Prove me wrong kiddo.  Is it Autism when he gets that fixated on doing something or pure Irish stubborn spirit?  Gee, I wonder where that comes from? ;-) If I could harness that energy he shows I could power a small city. When he is in, he is ALL IN!

But it is all so much work.   Always has been and always will be.  I am tired.  So bloody tired.  I'm tired of being tired.  I walk in a permanent fog.  The folks at Keurig follow me on Twitter.  (@FrenchFryInc) All the coffee in the world and cat naps stolen here and there still will never be enough because even when I get a chance to lay down and close my eyes I cannot turn off my brain.  I think of how much more there is to do.  What goals we need to focus on next.  Which direction to take.  How we will tackle the next big issue because there is always another big issue to handle. 

But I will tackle it because I love him with a power that is so fierce that is it frightening. There is a line in my life.  Before kiddo and then just kiddo.   The kiddo cannot be replaced.  I cannot fathom life without him.

But let's be honest here, at some point I will screw it up.  BAD!  Something will be the worst thing I could of done.   I'll either know it right away or it will hit me days later and I'll think "FUCK!"  I do a lot of stupid shit in the name of love.  I am a freaking hot mess and people now write me and ask me for advice.  What? I don't know what I'm doing at all?  WHY ARE YOU ASKING ME?? (why am I yelling?) I don't have my shit together at all.  I don't know what to say or what to think most days.

But I will keep trying because I see what hard work can do. I have many comrades in the autism trenches with me.  We'll brainstorm together.  We'll figure it out. 

And we'll probably order another side of fries.


  1. seriously, could this post come at a better time?? I ave had ONE OF THOSE mornings.. tears, yelling, grabbing frustration all of it!! I am sitting here reading this with tears streaming down my face because someone else gets it . I am second guessing the way I handled the situation , I am wondering will this ever end?? do I want it all to end? do I want my son to be AVERAGe? am I a bad mom?? thank you for just writing what I wish I could . I am having an extra large coffee for you !!!

  2. I feel the same in so many ways but we have four kids two on two off. We wanted more kids after the first two. People ask me why I had more after the diagnosis? Simple we did not want a normal child we just did not let autism take our dreams of a large family away. Nathan is now 14 and Parker 12 they have PDD and Moderate Autism. They help with the two yr old sister and the seven yr old brother as well. They are doing great thanks to an awesome public school program. There is always hope but never let autism or the fear of take away from a dream or goal you have because the kids adapt even with autism. I rarely give advise just our story : )

  3. I love that the coffee people are your followers. I think we keep the industry in business. Sure we will screw up our kids. NT, SN, or whatever, parents are gonna screw up. The balance is, we love them, we don't hurt them deliberately or carelessly, and we don't give up no matter how tired we are.

  4. Just AWESOME - you posted what we all think all the time! Keep up the wonderful job you are doing.

  5. "But I also have to be realistic. For as much progress he has made we still have so much more to do."

    this is where we are with Lily's teacher. Love how she loves our kid...need to make sure that regardless of how much she tries and how much she cares...that she's what's RIGHT for Lily. Is time running out? It always feels like time is running out.

  6. You must be my twin that can read my mind! I have been asking myself if I am pushing enough, not hard enough? What does the future hold for her? God, I could go on. and we are in the middle of getting the one year old brother evaled as well....OMG How many therapy people can fit in my house!?!?!?!?!?!? How am I going to manage the therapy schedule with one kid much less two? Well, the answer just happens, sleep deprived, brain fog and all.

    I am also probably driving everyone crazy because I just can not focus on the here and now, I have to 'set her/him up for_______.'

    Thank you for putting my thoughts on paper ;)

  7. I have been following your blog for a couple of weeks now, and I know I love you. Thank you so much for your candor. I am an SLP working with children on the spectrum and your fresh and honest words are so true and raw!

  8. some of my friends on the asd with kids on the asd say it not as bad if i have a kid like me it would be easyer then a typplical child becuse we get each other on a leavel i dont get nt very well

  9. I follow you on Twitter but this is the first time I have read your blog. Wow. You captured it. In my case, I have two kids, 12 and 10, boy and girl, and they have never talked. Not toilet trained yet. I am pretty sure that they won't ever be married, they probably won't ever leave home. My daughter had her first period at 10 years old and how do we explain to her what is happening? My son attacks people without warning which leaves us staying home, never going out to eat, never having discussions with other adults about anything but autism. But love for my kids is in my blood, in my genes. When people ask me how I do it I tell them that I can't not do it. I just do. Taking care of my kids is as important to me as breathing. Doesn't mean that I don't get frustrated. A couple of months ago I just busted out weeping because I couldn't take it anymore. A couple of days of that, and then I get back up and keep doing what I'm doing. Important to be honest with my emotions, as a guy we aren't taught to do that. I don't play the games anymore, I don't wear the masks we create to deal with social situations. I'm 46, I'm too old for that game-playing crap, I have real issues to deal with. OK, I'm running off at the mouth, and this is your blog, not mine :)

  10. I also have a serious line of before my son & after my son. Complete change in how my days go, what is important, what isn't, what gets done & doesn't get done.
    And I totally get not wanting to lose a teacher. I remember losing all my son's EI therapists - good lord, that was hard. And at the same time, we lost our ABA people, b/c we couldn't fit it in (or afford it) anymore. We are currently waiting to see if we may lose our private SLP, due to changes in the office. And I wish he could keep his current pre-preschool class pretty much until 1st Grade.
    So far as the future, I try to remind myself that no one knows their child's future. I actually get uncomfortable when people make predictions for my son - things like, by the time he's in kingergarten, he'll be totally caught up with his peers, he will probably lose his diagnosis, etc. He's 3 - do you KNOW that? Just about nothing has gone as predicted with this kid since birth, for good or bad. So no predictions please - you can tell me he's smart as hell, super observant, funny, sweet & adorable (because, duh, hell yeah he is) - but no predictions. We will help him & love him in every way we can, no matter what - only time will tell.

  11. i have recently started reading your blog. i have ASD. i am so glad that you write your blog because childhood was hard and adulthood isn't much easier and you remind me that, it would have been a hell of a lot harder had it not been for my mum. even if she didn't know what she was doing most of the time. i don't know where i would be without her. she did her best and that's more than enough for me.
    thank you.