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December 21, 2011

This week has been really hard.   I haven’t posted at all because I have been emotionally drained and have no energy to do much of anything.  I’m back to the crying everyday phase.  It sucks.

Monday Rett went to speech and since we are nearing January I brought up my plan to do everyday speech therapy.  They then dropped the bomb that they cannot afford to bill insurance daily. My insurance lowered the amount it is willing to pay per visit and they can’t afford that 5 days a week.  So I can bill insurance for one day a week for $88 but the rest would be out of pocket.  Which would be $56 times $224 a week for speech therapy that would not count towards our deductible.  That’s almost $900 a month.   Then you can add OT onto that.  So now the one plan I had for helping him is shot out of the water and I have no idea what to do.  Not only that but since our insurance dropped coverage to such a low amount, I have no idea if I can find ANYONE in Atlanta to accept our insurance.  I hate this choice between money and help for our son.   It doesn’t seem fair or right.   Why is it so hard to get help for your child?   Why does everyone else accept the second rate free help that is subpar and just go with it? Until we as mothers stand up for what our child needs, change will not come.  As long as we accept whatever we can get for free and write that off as good enough,  our children suffer.

Then this entire subject got me to thinking about where Rett has come since our diagnosis.  So I thought it would be interesting to do a little time line. I’m horrible with dates.   I can only keep track because I’ve written down every appointment on my wall calendar. It will probably go into Rett’s baby book.  The hardest year of our life.

July 21- Rett goes in for the screening through Early Intervention to see if he qualifies for services through the state- he does

September 14- Early intervention comes to our house and brings up that Rett should be screened for autism. The first time I have ever heard the word autism linked to my son.

September 21-  Rett takes the screening test and tests at risk

September 28- Rett begins speech therapy with Miss Rachael

October 8- Rett visits with Dr. Kellie in Atlanta and receives his diagnosis- autism.

And its December.   That means that six months ago I had a little boy that I thought was speech or developmentally delayed.  Six months ago I had a little boy that was going down the normal path of potty training, making friends, learning new things and I was part of the ‘normal mom’ club.   I wish I could go back to six months ago.

I think about how Rett performed for his screenings in September and October.  You are talking TWO or THREE months ago.   That is not that much time.    Rett was bringing us things to open but had no words for it.  He couldn’t request anything.  He had almost no random speech, was almost 90% echoliac or jargon.   I think about how far we have to go sometimes and I get lost in the sea of despair.  But if I put things into perspective, my guy is a CHAMP.  He has sentences now. He is creating random speech and hooking things together.  He can tell you what he needs.  He has new verbs and prepositional phrases almost weekly.  He is still echloliac but is using those words in more meaningful ways and changing them to communicate with us better.   He is putting adjective/noun pairs together.   While I am lost and sad and have no idea what to do,  Rett already knows.  He just keeps going forward.

My goals for Rett are high.  I understand now every autistic child can not be saved.  I’m not sure I want him to be saved.   But I do want him to catch up verbally.   Do I want it enough to pay $900 out of pocket that doesn’t go to insurance?  Or do I think what we are doing now is ‘enough’.   I haven’t made that choice yet.   I’m not sure what will happen to make either way seem right.  But I do know that I need to delight in the progress and hard work that my boy makes because HE is doing the hard work.  I’m just sitting in the stands cheering him on.

One Comment leave one →
  1. December 21, 2011 2:06 pm

    Laura, I know this is a rough road for you but your little man has accomplished SO MUCH in a short amount of time. You are a wonderful mommy and even if you have to do some of this yourself, that little boy is going to turn out amazing. ❤

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