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While You Were Sleeping

February 18, 2013



I have a feeling this happens a lot more then we realize.  That on any given night, at 2 or 3 or 4 am, somewhere while we are snuggled warm and snoozing in our beds, there is a mother lying awake, her mind abuzz with worry for her child.  That was probably my mom when I was 16 wondering if I was going to make it home before curfew. Who I was with and what I was doing.  And the circle keeps going. Now its my turn.

I woke up this morning at 3 am overcome with worry.  The kind that freezes me.  Its the kind of worry where you feel small and so out of control of helping the situation.  Rett’s scholarship is coming to an end.  We have mere months left and already I am planning for what next.   I have to admit that Rett’s speech eval hit me hard.  It has made me want to climb the tallest mountain and scream at God for being so unfair.  That I did what I thought He wanted me to.  That I fought and I gave and I worked and I did everything I possibly could.  And it wasn’t enough.  Why couldn’t he meet me halfway for this child?  I have to admit that with each passing week, month and year, the gap between Rett and ‘normal’ grows.  When he was little, he didn’t stick out quite as much as he does now.  It was easier to pretend that this was going to be ok.  And as I lay in bed this morning worrying, worrying, worrying, I actually wondered why I was so concerned with getting this scholarship again, with seeking out ABA. I have been so overwhelmed with the sense of failure that I have lost sight of hope.  That when Rett was diagnosed, Dr. Kellie told us that she hardly ever gets to say it but that she felt he could be saved.  That therapy could work for him.  That his life would not always have to be struggle. Or not so much anymore then the rest of us.  And I have forgotten that.

To be honest, in the grand scheme of the everyday,  I can’t honestly tell you that Rett has gotten so much better with ABA.  There were skills that he was lacking that he can now do.  Heck, they are teaching him to ‘read’ (ie memorize) words now.  And its pretty exciting.  But his behavior, his speech, his ability to navigate the world outside of our house, it really doesn’t look all that much different to me.   He takes redirection better then he did before.   The things that are hard for other kids, they come easy for Rett.  The things that are easy for other kids seem at times impossible for Rett.

So this morning at 3am when I couldn’t sleep and I lay there thinking how can we afford 10 hours of therapy ourselves.  And speech. And is the kid ever going to get OT? Which led me to berating myself for not being a little more discerning when filling out the parent survey that could possibly get us Katie Beckett and how what a waste of good money that was if I fail and the circle of guilt, of beating myself up, of feeling like a failure, I just got up and took a shower and got dressed and ready for the day.  Because I’m not going to sleep.

I was reading my blogs earlier today. Catching up on all the lives of people that I don’t really know but that I feel like in some ways I do. I’ve been reading some of these ladies words for years now.  Watched babies being born and grow and lives becoming routine.  And I thought, what if.  What if that child would have been born with autism?  What would her life look like now? Would it be full of art projects and quilting and random parties with neighbors?  Pretty pictures showing the beautiful moments of life.   What would she do with my life? What would that blog look like?

I’m coming to a point in my life, now that I’m almost 30, that I’m growing up.  But I have to admit that looking at someone else’s pretty life and saying ‘well if you had two autistic kids and moved across country  away from everyone you’ve ever known and gave up having your own home, I’d like to see your blog then’ it felt pretty good.    But the fact is, there are women out there with tougher lives and harder times that are making something beautiful out of life.   I have never been one that has been good at settling. It has been both my strength and my weakness. It has pushed me to do more, be more, live more.  But when things can’t be the way I want.  When I can’t have it all.  My fall back is shut down mode.  There are those people that will tell you that some people are always saying ‘well if such and such would happen, THEN I would be happy.’  And for them, that may be.  They may always be looking for the ‘if this’ in their life to be happy. But for me I know its true.  I really would be happy. I have seen it happen in my life.  That when things get to how I feel they should be, I am happy.  I am not an ‘if this’ person.  I am someone that does have difficulty blooming where I’m planted.  I’d rather bloom in a specific garden.  Which makes things hard for me. But I’ve come to a place where I realize, that’s just me.  I don’t like it.  But beating myself up and making myself feel like crap isn’t going to help.  I just have to take steps to get to where I will be happy when I can.  And deal with where I am when I can’t.  As best I can.  At the end of the day, I am still only human.

Nothing seems to be working out for me right now.  I have had a year to figure out this therapy thing and where funds were going to come from.  I don’t think people realize how freaking expensive all this is.  You can take a look at a cost write up here.   I have yet to figure out ANY long term plan.  Right now we have Easter Seals which I am grateful for but with budget cuts, they just slashed our yearly funding to 2,000.  I just sent in my invoice for one month of speech from Amanda and that was close to $600.  So that will be eaten up in four months. And that’s only once a week therapy. I really feel that he should be going twice a week.

Rett’s strength is all the skills he has going for him.  He can do so much.  But its also what keeps us from getting help.  Because he can do so much.  He might be a year and a half behind in speech but he is so close to being on level academically and daily living skills, it shoots us in the foot.  What are you supposed to wish? That your child was worse?  So on one hand, because my child has so many skills he is a perfect candidate that with therapy he could lead a normal life.  But with all the skills he has, we can’t get him help. It seems so unfair and makes no sense.

My therapist asked me once how I dealt with stress.  I have a hard time coming up with realistic answers in the moment. I’m not even sure what mumbo jumbo I fed her. It wasn’t a lie on purpose it was just whatever fell out of my mouth when I was put on the spot. But the truth is, I deal with stress by buying my children clothes and ordering take out.  And I beat myself up about this too.  Yesterday I was chatting with my bestie and I mentioned that I had gone on a kids’ clothes buying binge and she said ‘well at least you aren’t drinking straight vodka’ and I really wanted to hug her then.  I miss her so much but its the most amazing people in your life, that across state lines can still make you feel ok about yourself.  Because she’s right.   We aren’t doing half bad.  Although I might be more fun to be around with more straight vodka.

Its now 5 am and I am no closer to figuring out the answers to all of my life’s problems.  My therapist claims that I have to stop taking so much responsibility for everything and accept our family’s financial limitations.  But I think she’s wrong.  I think that my inability to be happy where I’m planted is a strength here.  For Rett, I will not be happy until he is getting the help that I feel he needs.  The amount and the quality of therapy he deserves.  And nobody is ever going to change my mind about that.   I may have a lot of faults and a lot of weaknesses but finding the window that’s open when the door is closed is not one of them.


One Comment leave one →
  1. Cecilee Hayes permalink
    February 18, 2013 2:09 pm

    You’re a soldier in the army of mothers that have to fight to get their children the help that they need. You do not get a medal for obtaining the help they need but you deserve one. You are the unsung heroes. I admire your courage and dedication. I lift my glass of vodka to you in salute.

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