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Anger and Confessions

September 21, 2011

Being pregnant makes me an incredibly bad speller.  I read over the post yesterday and found several typos.  I fixed some of them. Some of them I just can’t care enough to fix.

There are steps to dealing with grief.  Its funny how a diagnosis of your child leads you to grieve. But I really feel like we’ve lost the little boy we thought we had.  I don’t resent him. I just resent the situation. I don’t know the steps of this grieving process. You can think of it like a stair case.  You start at the bottom and go through these emotions until you come to the top.  Except my stair case is circular and I’m not going anywhere.  I’m upset, I’m angry, I accept.. back to DENIAL!   Wonderful denial.  Its only been one week and it feels like this has been our life forever.  And it seems like we are sinking further into this situation.

 

This week, Monday we went for a play date with a son that has some similarities to Rett hoping that they will connect.  Or that we can at least give each other ideas and support while we each deal with our situations. Tuesday was Mother’s Day Out for Rett. Today he has speech therapy here. Tomorrow he has swim school and then Friday we meet with the elementary school for our transition meeting.  Our life seems to be revolving around Rett right now. Which is great. Unless you’re Evie.  Right now she doesn’t realize but how long will that happen.  And when I try to add in a nursing infant to this mixture I’m seeing something resembling a three ring circus to be honest.  But its funny how seemingly horrible situations turn into new routines and new routines become life.  Wish I could fast forward to that.

 

 

I’m mad at a lot of people. But most of the guilt returns to me.  I don’t believe anyone is responsible for your child but you. You chose to have them, you choose to watch out for them and care for them.  But I did try. Some people that I trusted let me down.  The major villain in this drama is my pediatrician.  We’ve only had one pediatrician. She’s seen them both from birth until now. She’s seen them through well checks. Through first steps. Through ear infections. Through ‘ear infections’ that were actually molar issues.  I thought this was the person that cared most about their health, besides myself.  But when I started researching I found that this response is all too common.  I voiced my concerns about speech. ‘Let’s wait until his next appointment’.  Voiced them again  ‘Let’s wait until his next appointment.’  Finally when I voiced my concerns AGAIN, almost a year later, I was referred to a hearing/speech doctor in the building.  I have that kind of insurance where you don’t even need a referral. The screening was free.  Why didn’t she just tell me to go earlier?  Because while everyone was just WAITING we wasted a year. Early intervention in your state ENDS at age 3.  Over. Done. Missed your window.   We go on Friday to see if he can qualify for help through the state.  I’m not holding my breath.  My kid was too important to wait.  I let her waste a year when he could have been getting help.  Maybe he wouldn’t be so far behind now. Maybe we would have already found answers and been on the right path.  Now I feel like I have to make up for lost time.

 

I’m also mad at… whatever.  Fate?  Irony?  I ended up with an autistic child in my classroom all 3 years that I taught.  Some of them were transfers. They didn’t even know they were autistic but they got placed in my room.  I felt that I was led to these kids. I participated in autism camp and sought information.   I accepted the challenges that each child presented and did my best to serve them in a large classroom setting.  I did my part.   And you can say that God prepared me.  Well then take it back. I don’t want to be prepared.  I don’t want a reason for people to see that it was ‘easier’ for it to happen to my kid.  Screw that.   Its no easier.

 

All the people saying that his life will be basically normal, that it could be worse, that I should be thankful. Yah.. they all piss me off.  I’ll be sure to remind them of that if their kid gets diagnosed as being autistic.  Remember how great you guys said it would be?  Its easy to be ‘great’ whenever its not your kid.  Those people won’t be there while he’s trying to figure out why he doesn’t have friends.  They won’t be there while we try to figure out how to help him with basic life skills.  Wasn’t your life hard enough?  Now imagine being autistic.  Great, huh?  I bet.

 

With all that said… I have friends who would probably wish this on their children if they could take their current issues away.  Friends who take their children to chemo.  Friends who pray and write letters to their children because they are no longer with them.  And for them, I try to be thankful.  ‘Try’ right now is very hard. But its only been a week.

 

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