Tuesday, February 18, 2014

Same as it ever was...

Being the woman who is rapidly approaching forty, 80's tunes are my childhood/teen years.  Certain songs have taken on new meaning to me as an adult.  Mainly because I think there were just certain lyrics I just didn't get.  I'm pretty convinced now that Talking Heads must of recorded "Once In A Lifetime" after talking to an ASD mom or dad because of the following line below. If I had a dollar for every time I thought it I could pay off my house, your house and maybe a lot of other houses.  Like an Autism Oprah or something. 

"And you may ask yourself-Well...How did I get here?"

Seriously, some days I just walk around in a fog.  It's not just a sleep deprived one.  This life is so surreal.  Nobody signs up for this and nothing can prepare you for it. Thank god for the well established routines because many days I am working on auto pilot.  I get to the end of my day and realize I have no idea how I got here.  How did I mange to pull off another of this up and down life?  Cause I am guessing as I go here. A lot.  I don't just live in the state of New Jersey.  More like a state of disbelief. 

"And you may tell yourself This is not my beautiful house!"

I am typing this in a living room with no lamps in it because my son has broken all three that are in it.  It's been months and we still haven't replaced them. Part of me even thinks "Why bother? It will just happen again."  I joked with a girlfriend yesterday it means we can't have people over at night to entertain but even that's not true. Entertaining people can sometimes be so overwhelming to the kiddo that we often don't even try.  The build up to the event itself is an anxiety marathon of scripting.  What will happen. Who will be here.  He then obsesses on their behaviors and actions and is annoyed that I can't guarantee what car they will drive here or what hat they will wear.  It's impossible to clean up after him as he returns everything to all the places I just picked things up from. My order is his out of order. Forget ever throwing out any toy without hell to pay. There's no telling when he'll return to an obsession and I don't really want to be without it at 2AM when he desperately needs it in order to sleep. I live in a home where I go to sleep in one bed and wake up in another and consider it normal if I only had to do that once in the night.  

"And you may ask yourself
Am I right?...Am I wrong?
And you may tell yourself

Every day I ask myself this. Every. Damn. Day.  We just stopped private OT for various reasons.  Was it the right call?  Will he regress? Will he be traumatized that he isn't going to get to go anymore? Therapists become our friends now.  Not coaches at little leagues or Den leaders at scouts.  Am I wrong for stopping an activity that we were kind of certain he had hit a wall?   Should I made more sacrifices to try and keep going?  Even though we are shelling out so much freaking money as is on therapies on one income. What about these meds he is on or the food that he eats or the amount of sleep he gets or the soap in the bathroom or the very air we breathe.  I'm convinced daily I have screwed him up beyond repair.  Thanks judgmental Internet trolls who leave comments on my blog or on my facebook page confirming those fears.  Appreciate it! Most be exhausting, having to correct the entire web on their choices.  However do you manage?  

"Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was...Same as it ever was...
Same as it ever was...Same as it ever was..."

Yeah, David Byrne really gets me.  Gets this this life.  I'd like to buy him a side of fries.  I can resent my kiddo's rigid need of schedules and routines and yet at the same time I would cut a bitch if someone try to mess with the system.  I may not like how our life is sometimes but it doesn't mean I love my kiddo any less.  I get tired of the sameness but need it too.  I'm just guessing here so much and if something works, well, we're keeping things the same as it ever was. :-)



  1. I love this! Share the same thoughts!

    And 80s rule!

  2. Sharing this on the Autism Society of Nebraska Facebook page! Awesome!

  3. You are an incredible writer, Eileen. I mean it. I can hear you saying all of this. Its just so honest that its very moving. Most importantly, you are a really great mom. As exhausted as you feel, you are giving him such an unselfish gift of love- even when its hard and seems impossible! Keep on following your gut- and keep writing- its inspiring!!

  4. Judging by those lyrics, i think David Byrne in an Aspie! Thanks for saying this, I second guess my decisions all the time too as I think a lot of us do. Wish I could be as certain as those trolls about the "right" thing for my kid.

  5. "I can resent my kiddo's rigid need of schedules and routines and yet at the same time I would cut a bitch if someone try to mess with the system."
    Hell yes.

  6. Thank you, Thank you, Thank you!! SO true. I must go and listen to this song on repeat now. It shall be my heme song for the day!

  7. I have always loved this song, but saw a different meaning in it. Thank you for enabling me to see it in a different light. I love what you write. It helps me to know I am not alone. Don't listen to anyone who isn't positive. You can't understand unless you've been there.

  8. The thing is, you are not alone. My wife and I have done this for 19 years now. Here are the things you learn:
    1, You get used to the lifestyle and it becomes standard for you and it really does not bother you too much.
    2. Peoples opinions are like assholes, everybody has one but one is not any more special than the other.
    3. You get to a point where you figure out the most important thing in life is being happy. If he or she is happy that's what makes a life, all anybody needs in the end is to be happy and loved.
    When you are in the ASD world it is always an adventure, think of life without it after all the years and things would be boring without it. Don't worry about the what ifs and should I's. It all works out in the end.You will look back in years to come and see that all it does is give you more grey hairs by 45. :)

    1. Great blog and this reply was awesome, thanks for making it seem less overwhelming and letting me feel less alone today!

  9. See, this is why I wish you lived nearby. I think I could actually entertain your family, because I know if my kid melted down, you'd understand. Please move to Illinois. Now.

  10. Been doing this for 23 years. I share your thoughts also. Somebody that understands. Thank you.

  11. Well said, and know that you are not alone. Down with the trolls!

  12. To the parents doing this for many years ( we are only in 4), and I know every kid is different and there is no real prognosis, but have you seen growth, does it change as they get older?? Or is it just new versions of when they were stressful wondering if he can work or date or do some of the "normal" things that don't require constant care...ugh, keeps us up at night (and we are up anway, so mot such a big deal). Ha.

  13. I get you. All you can do is take it one day at a time and do the best you can on that day!

  14. Normal to everyone is different! Through the years he or she will do things that amaze you and he or she will do things that drive you crazy. Some of the things that drive you crazy will just go away. Others will crop up but they tend to go away too.
    All I can tell you is this. It does get a whole lot easier as time goes by. I look at the old days of why we were starting out and remember days when I didn't think I would be able to handle any more, ( and oh yes, we went through many wall painting days). I look back now and say WOW, it is so much easier now than it was then. You will build a routine with your child that you both get used to and you will see that it just becomes second nature to you both. I will not lie, you have rough days ahead to get though but in the end you will find that it does get easier,I don't know if you kind of adapt or things get easier but it does get better .

  15. I figured "why bother" fixing the big hole in my son's wall behind his bed that just kept getting bigger and bigger because he kept on bouncing off his bed at night. Instead I just put a pegboard over it (he loves the holes:)

  16. I'm with you on all of it! I'm a single mom and full time college student...I totally get the "auto pilot" thing. I swear it's my life! My son scripts when he's drives me nuts! However, since I've been back in school, I've been forgetting to prepare him so his questions are due to my not preparing him most of the time. I swear, I need a second and third brain in order to remember everything, help him with his homework, and write all of the papers I have to write. I get it. *hugs*

  17. Hello this is Keegan again from the Sluis Academy and you are definitely right that life doesnt always go as planned but from reading your posts i must say you seem to staying positive despite being on auto pilot. If possible the best thing to do is find a new hobby you can do from home at least that way you would have something new to look forward to! even a new tv show when your son is asleep. every little bit helps! Keep up the good work.

  18. Great post. thanks for writing. :)

  19. Great writing! I get you...I think you are awesome and you are doing a great job with your kiddo and everything you are doing! Thank you for your blog! ��

  20. Our 80s song is " We don't have to take our clothes off"