Two steps forward ten steps backward...

[missyt219]

...yes this appears to be the journey through life with Autism.  I should not be surprised, I should not be upset, I should not be heartbroken or dumb founded or depressed.  It has been just about two years since my daughter has been diagnosed with moderate to severe Autism, Sensory Issues and Comorbid ADHD.  I know now why things are the way they are, can assume from one day to the next pretty much how things will or will not go.  We were blessed with this beautiful girl who is teaching us new things, showing us new ways and someday will show the world something special too.  It's just so frustrating at times when we think and see how much progress she is making and and how far she has come and then smack it's like the rug has been pulled out from underneath and we are starting all over again.  I know it's in there, I know she can do it, what I don't know is where it disappears to and how to get it all back.

It seemed for a while there that while yes she is non verbal, we could get a few familiar words, some echolalia, some sign language with familiar words for requests, she was eating on her own, performing on her own, taking her bath with no problem.  Now she hardly says any of her familiar words and just grunts, whines and points.  She constantly has her fingers in her ears ( no infection), she will not eat or drink on her own.  I have to hold the drink for her and if I take my hand away she pushes it back.  For her to eat at all I have to break her food into little pieces and feed her, if she does chew she will then take her food in and out of her mouth.  She just will not eat unless myself or somebody helps her.  At school she eats nothing all day long.  I feed her oatmeal at 7:00 am and she does not get out of school until 2:00 pm.  I pick her up so naturally I feed her immediately when we get home if she will not eat anything in the car.  When we approach stairs to go up she just stops and when I try to get her to go up with me she just leans forward, I have to pick up her leg to get her started.  We had problems in the past with bath-time, but it seemed so long ago, she loves "swimming" in her tub.  Now it is a mission just to get her in the tub and washed before she is running away with soap still in her hair. 

Anything she did on her own she now seems to need assistance with.  I just can't grasp how she can make such progress and lose so much at one time.  It breaks my heart to see this.  I try to be more firm with her trying to pull the words out of her, making her eat, getting things on her own but it is also difficult to see her frustrated and get angry.  She has had phases with the eating thing in the past but it would only last 2 to 3 weeks where we are now going on 3 months (not exaggerating) with no change in sight.  In the past I could pinpoint the trigger for the possible interruption in her flow of things but this all started out of the blue for no apparent reason and just seems to continuously progress to all areas of her foundation.  I sometimes feel like she is slipping away and I have noticed her staring off more frequently along with less eye contact.  The only thing I can definitely attribute some of this to is her week & a half break at the end of June and then returning to summer school to a new teacher and speech therapist.  The food issue began 3 months ago and has only gotten worse.

I sometimes feel as if she is playing me like a fiddle, yes she will see what she can get away with, but other times I see this as very serious and have no idea how to get through.  I know there are many journeys to be had in the life of a child of the spectrum and can only hope that it is just that.  We continue to research and work with her everyday.  I am anxiously awaiting the day when she can communicate with us be it verbally or through writing what she wants, what is bothering her or how we can help.  For now we will plug along sometimes through days of guessing hit and miss but we will find a way to get through.  I try not to cry, feel sorry or even depressed but somedays I just cannot help it.  I know I must be strong to help her prevail.

"Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow."  (Dorothy Thompson)

[SahmTam]

Jul. 17, 2008 at 5:10 PM (((((HUGS))))) I just got my son's PDD-NOS diagnosis today and am still reeling a little at the prospect of all of the therapy(ies) in our future. My son's high-functioning and verbal, so we have a means of communicating, but in high stress and transition times he becomes belligerent and un-potty-trained and it seems like all of our efforts have been in vain... but then he makes progress again and we keep going. It's one crazy path, isn't it!?!