Saturday, June 23, 2012


When you have a child with autism you experience so many different emotions.  Grief is a huge one.  I think largely because it doesn't come all at once.  There are different times.  The first time you realize you can't connect with your child, that no matter how much you talk, hug, kiss, try to make eye contact, there's a barrier that blocks you from him.  Then he's evaluated somewhere and comes out even worse off than you expected.  Then comes the diagnosis.  You knew he had it, but the official nature of it seems so... final.  Maybe you have a stretch of 2-3 weeks where every day is even MORE of a struggle than usual, which is indescribably exhausting since every day NORMAL means 1 on 1 attention for him.  Then maybe he takes up biting, or spitting or hitting or pinching, or all of the above, and you know that that means that your sphere of movement is restricted even further.  People stare, glare, talk, disapprove.  Sometimes its easier just to stay home.  Of course with daily therapy you're out frequently anyway, so the cabin fever isn't that bad.  Life is a constant struggle to just get by-  finances are in the pits.  You have to make impossible choices- make food from scratch with time you don't have, or buy the cheapest convenience food you can, and hope everyone's health is ok.  Take time for yourself to decompress?  Ok, but do it knowing you are foisting the more needy child on the also exhausted other children.   Do you have another young child? That child is likely acting out and behaving much like the other when he realizes he doesn't get the same amount of attention as his brother.  Then you get the evaluation from the public school, which lists his cognitive ability in the 2nd percentile or less, his congnitive/verbal ability in the .1%  Yes, that was POINT one percent.   The grief is back.  Its back with a vengeance.

So when you live like this for a year or more, with no end in sight, and public school of all things is your refuge and you actually look FORWARD to it,   The world is upside down, cats and dogs might as well be best friends, nothing would surprise you at this point.  You're so worn down and exhausted all the time, you are overcome with guilt and sadness and the numbness of steeling yourself to face another day and get it all done.  You still have to deal with other crap.  The disconnect notices are coming.  You want your husband to stay home more, but man, the disconnect notices!  Another night of takeout, you're wiped and the peeps need to eat!  life changes happen leaving you even more alienated and alone.  You can barely pray anymore, you know you should be praying more, you feel guilty.  You go to bed, you get up, another day.  you do it all again, you get more bills, they didn't process something right, now you have to call the insurance or add another bill to the pile.  You haven't called either of your grandmothers in MONTHS,  He breaks a window, the other toddler tries to break a window, you need to find a new church, you do, but don't even almost fit in.   you try to find another church- there's no nursery, Its raining,  he gets all out of whack from lack of outside time,  fall is coming and the college kid will need books, guess you are calling your dad again to ask him to cover it...   your landlord comes to pick up rent, the house is a mess, you feel bad, hope he doesn't evict you, you go to bed, zone out the next few days, go to bed, get up, nothing changes, Then one day he is doing GREAT acting almost normal.  the next day he's back to the same... you go on and  you go on, and you go on, and you go on.   And you hope that someday things will be better.  But hope is a rare commodity these days.

So you just keep going.


  1. Rebecca, I am so sorry. I am keeping you in my prayers. You should not feel guilty when you don't remember to pray, as I believe that it's times like this that the Holy Spirit intercedes on our behalf.

  2. Dearest Rebecca..... This is a beautifully written and honest account (and quite sanitized compared to some similar posts from some.autism moms ive read!) Of the experiences you're having. This is such an accurate reality for some of us, and I couldn't believe how much of.that I could've written verbatim myself! And you are.handling even mOre than me with having more older children. This was not depressing. Real, truthful and encouraging to some of us who sometimes feel like the only person who couldve written a similar letter. Many people especially on the Autism spectrum have had those results said over them and come out doing amazng things in adulthood. Take heart that Asher is beyond smart and intelligent. with these kids it its a test next to ”normal” standards. He is inputting info and outputting it differently and cant be tracked on a piece of paper. When elijah was.diagnosed I hardly said anything on the way home and cried some. Taking it in that this is real now. But it will be okay. Sometimes I have to tell myself to remember that hes still elijah no matter what and hes ours and has amazing abilities and callings on his life of his own and no diagnosis will change that only open the doors for more help. You will make it, we'll will make it. Asher, will make it! :) May you be filled today with peace and have a big hug from the Lords arms and my heart too sister. Who knows why Autism chose us but were not going to be overcome by it. some days are bad. Some days are real bad. And then like you said we have a good one. I wont say too much.more but know that youre not alone and I understand too I am here on this boat too that doesnt tell us where were going. Love you, youre awesome, and everything will be okay. I get the stares and looks too. Sometimes I tell strangers he has Autism cuz I hate being judged when hes screaming in public. I know my friend, I know, and.coynting.down the months until early preschool too..... God bless you today my heart is SO with you. Christina