Still rings true 8 years later.

Sometimes Eric makes himself melt down.  He is perfectly fine one minute, and full on crying and screaming the next.   We don’t understand it – but we just sit back and let it happen.  There is no way to stop it from happening; and we’ve learned to believe that he just needs to do it.   It’s heart breaking to watch.  It’s frustrating to not be able to help.  You begin to question everything.  Is there something else you should be doing?  Was there something 9 years ago that you didn’t do that would have made a difference.

And then on the other hand, I force myself to reminisce and remember some of the really hard days.  We went to a doctor for many many years that required us to do pages and pages of paperwork every visit.   It was a pain in the ass.  I hated doing it.  But now it serves as a record.  A record to reassure me of the progress that he has made.

Tonight I was having one of those moments that I needed to be reminded of the progress he has made.  I decided to randomly pull up the first form that I could find from “back in the day.”  I pulled September 13, 2010 when Eric was 6 years old.

One of the questions on the form asks about how we -the parents- feels about life at the time of completion. 

Here was my answer:

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“Worried – I worry that somehow we are not doing enough to help him, that there is something more we could be or should be doing.  Sometimes I feel like maybe we are not doing the right mix of supplements, or that we should be doing more ABA training, etc.

Confused – There are some days that he is a rock star, and so calm, compliant and “on the money.”  And then we have days where there is chaos surrounding him – and continuous tantrums, crying and defiance.  It’s so hard to figure out what triggers the change in behavior and I am continually over analyzing every detail to try and figure it out!

Is our Window Closing? – Every day I feel like time is passing too quickly.  I need more time to recover Eric and get him into mainstream classroom, interacting with his sibling more typically, and in general just able to have a conversation with me (or anyone) and have the ability to make friends.  This is my greatest wish…. a conversation with my son!

Inspired – Lately there have been many success stories on the internet, in the news, and from other families who have a child with autism – and those are the fuel to my fight to get him back completely!

Hopeful – Eric continues to progress, and that keeps me going.  He has already made great progress since the age of 3 until now at the age of 6 – from the various therapies and treatments as well as general maturation. “

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Interestingly, so much of this still rings true.   It’s still my greatest wish to have a conversation with my son.  I still worry that we aren’t doing enough or the right stuff.  I am still confused daily by how quick mood changes happen.   I’m sad that my dream of my kids going to school together never came true – even though I held onto that hope for a really really long time.  I thought if I believe it for enough years that it was going to happen.  And this also shows that my goal all along was the ‘fix’ autism, to ‘recover’ Eric from autism, to somehow someday be able to say “Remember back when Eric HAD autism….?”  I knew even then that it wasn’t exactly logical, but it was seriously what got me through some days.  I had to hold onto that hope.

And that is what I still cling onto these days – during the hardest moments.   

I hope for happier days. 

I hope for answers to why the mood swings so quickly and dramatically. 

I pray that we will somehow hear him if he gives us clues as to what could help him. 

I pray that he isn’t silently living in unknown pain. 

I pray that he loves us.  Really loves us.

I hope.