This is a hard post to write and yet I need to get it out because I know there are many of you out there who have been in the same place as me and can perhaps emphasize with our situation.
You see, my beautiful daughter, of whom I had just been boasting about last week, may be brain damaged. At least that's what the psychologist has told us. In fact, there isn't really any "may" about it. She will be referring us to the Child Development Centre where we'll get a "team" to work with her. In fact, she won't be surprised to find that E falls on the Autism spectrum.
Are you kidding me? We go from a few learning difficulties to brain damage and possibly autism. I am told to prepare myself for the fact that E might not leave the home until later in life and that she may never learn to do those things that she can't currently do now. Again, are you freaking kidding me? At worst, I thought she had Central Auditory Processing Disorder. I've always thought she didn't hear things quite right but right from the get go all initial assessments dismissed autism. No, she's just quirky they said. Now I'm told that as she's my first born I've just gotten used to her and consider this to be normal. Now I'm told to watch Temple Grandin because thanks to her we know so much more about animal behaviour. That's supposed to make me feel better? How about a little time to adjust first before you start throwing out successful autistic people at me to make me feel better.
Right now I'm either racking my brain trying to figure out if I had done something to cause this to happen or grieving because I know how hard it's going to be for my child to walk this path. Add to the fact that I know she is getting tired of all the extra tutoring and just know how hard it's going to be to have to take her to a whole bunch more appointments.
Her last tutoring lesson didn't go well. Apparently she told her teacher she wanted to die. Now I am pretty certain she didn't mean it and was just trying to express her frustration at not being able to have play time. She doesn't see all the time she does get to play just when she doesn't get to play. This was on the same day when we got the news from the psychologist so as you can imagine I was pretty much an emotional basket case.
The worst is that I continue to run over all the times I've been impatient or angry with E when it was most likely not that she won't do something but that she can't do it and here I've been berating her. Can you imagine how bad we feel?
Sure it could be worse and there are dozen of situations or conditions that would be much more difficult to live with. It doesn't take away from the fact that we need to have time to come to acceptance of the situation and when we do, we will be able to put off the tears and take up the cause that is our child.
When I read about how people say it was a relief to get a diagnosis, I can't relate to that. I can honestly say I don't feel relieved.
I feel angry
*Please, if anything I've said in this post offends you do not flame me. I'm being real here and am expressing my feelings. Good or bad it's how I feel at the moment as I work through this new curve that life has thrown us. Through it all she's my child and I love her dearly no matter what.*
What a doozy. I imagine you are going to run the whole gauntlet of emotions ... hang in there. Hope you get some real encouragement and hope soon!
ReplyDeleteHoly cow are you kidding me! wow that is scary to hear! I`m a little speechless. Sending some prayers to you and your family!
ReplyDeleteOooh, that's tough.
ReplyDeletePoor little girl. I can't imagine how hard that would be?
Have you considered taking her out of school for a few months? Just to get life a little more organized, and to give her some breathing space.
Is it 100%? I would probably get a second opinion on anything this significant, especially since you want to make sure you have a totally accurate diagnosis.
ReplyDelete(Though the "leaving home later" part wouldn't bug me…My kids can stay with me until as long as they want, I wouldn't push them out even if they were rocket scientists).
Sometimes medical staff are really glib about things that are life-changing for us, which is obnoxious. I'd learn more about it, double check everything, and be someone that speaks out on my child's behalf to make sure they get the best they can. And I'd want to work with people who are sensitive and compassionate to the stress such life changes would have on my family.
No it's not 100% yet. We're still waiting for the final report and even then we're going to go to the pediatrician and get his opinion. We can't afford another opinion by a psychologist. It was $1500 for this one and fronted by my inlaws.
ReplyDeleteI've come to realize that she was glib and a bit harsh in the way she told us.
*hugs*
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