Saturday, February 28, 2015

I am not there yet

Yesterday, we had a dinner put on by jowonio for parents who have kids receiving services.  It was free to us and included paying for the sitter we used.  We had to introduce ourselves and say what we admire most about our spouse.   As soon as I started talking, I broke down crying; no one else did.  I was just saying that Alex sees the big picture and reminds me that everyone will be ok.  Another person later spoke and addressed me saying, really, it will be ok.  What is ok though?  I am being selfish, but I want ok to be just like all the other kids, no struggles.  I don't want to change him, but I hate seeing my son frustrated and working so hard for skills that do not come without practice.  Then I read the email from his TA about his day and it started with "Landon had another fantastic day."  So am I am reading it, I am looking for the fantastic part, but I don't see it.  He tented his books, he did not know what to do with the rainbow pieces again, he struggled on the trike, he was upset in speech with the high expectations now, etc.  He did play with peers with a new ball popping toy, he ate his cereal fine, he helped pass out snack, and he was in a good mood.  Still.... what is the FANTASTIC part, and then as we sat at the dinner yesterday, with people around me talking about their kids head banging over and over so they have marks, another girl who will not eat at all, a 4 year old who never sleeps, a nonverbal kid headed to Kindergarten, it hits me....I don't feel I belong here yet.  I don't fit in with the typical kid, but I can't relate to all of this.  My son has been trying to talk since 14 months, trying so hard.  He is so smart.  Even the severe kids with ASD people were talking about, were talking at 3.5 years, but not pointing, no sharing, no eye contact, stuff my son did easily and early.  So it is the apraxia that prevents him from speaking, which is so frustrating, because he has so many more skills than many of the other kids whose parents I sat with.  I had a hard time listening to the speaker.  My mind was on my boys.  It's a total grieving process, and I am definitely not through it yet.  I am just not there.

1 comment:

  1. I feel somewhere in the middle too. It's very hard :(

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