So much for results :( My son has them stumped! What I am seeing at home is completely consistant with autism. They have no doubt I'm telling the truth or I wouldn't be there! However, when they played with him and came to observe him they saw NONE of it. He was so well behaved the week they came and observed him at AWANA I had leaders asking me what I did to him. Of course right?
So they say his behavior is not consistant with autism but they have no clue what is going on. They are certain something is there. Something just isn't "right" and even they can see he is a little different but they have no clue what is causing it. And just after they said they didn't see any of the behavior problems in him he randomly picked up his sunglasses and chucked them across the room then refused to pick them up. She just kind of said "I see there is some behavior stuff going on here. Is that what you are seeing at home?" and I told her that was a very mild incident for him. It's much more extreme at home.
So I have to call regional center and get an evaluation from them. He is referring us to UCSF (about 3 hours away, yikes!) to be referred there. And he is contacting Jason's pediatrician's office about his billiruben levels when he was born. They were high enough to cause neurological damage and there's some rare thing that's caused by that apparently. I don't remember what it was called though.
They said they could give us a PDD-NOS diagnosis but they don't want to do that because it won't help us and they want to find us a true answer. I'm thankful for that at least!
So yeah, in the past week we have stumped the ER, a developmental pedi, an autism specialist, a urologist, and an allergist. Fun!!
I'm beyond my breaking point. My kids are severely lacking attention right now. My house is such a mess I have to clean it before I can find a spot to play with them. I have done 2 loads of dishes today and have probably 2 more left. There's no clean spot at all in my entire house. And normally I'm the type to drop everything and put my kids first but today I have to find a spot to spend time with my kids! Plus I have to make all of these phone calls for our next steps and call the urologist back who still hasn't called me from Monday!
I have to talk about it. I just have to. Plus it's easier to post it on fb than to update everybody individually. But the responses really bother me.
Like this one...
God knows and its all in his timing and His hands.
and don't forget...
If you keep a journal of everything they will have no problem figuring it out.
No duh!! I give my son to God everyday! Otherwise I would have strangled him by now! Can't I just get a little sympathy and support instead of lectures about how God knows? I have been driving my son all over the place to get to these appointments. I've been fighting his insurance company to not drop him. We have gone through a traumatic needle experience and then blood draws after that which involve holding him down while he screams at the top of his lungs terrified while they draw blood.
I know they MEAN well but I'm tired of it! I'm tired of having to be so strong for my son and feeling like I just get lectured and put down for not giving to God even though I do!! I'm tired of driving him all over the place just for more "I don't know" responses. I'm tired of him not having a place and people looking at him like he is strange and I don't have an explination at all!
I mean, is it too much to ask for an "I'm sorry your are going through this and I will be praying for you"? I see them on there and they will say "I don't feel good" and someone else will be like "oh, let me take your kids so you can get a break. Let me make you dinner." all sorts of stuff like that but all I get is lectured!
I feel so alone :(
And now I just discovered ants all over my floor. Uggh!!! I have just under 3 hours until story time. We've missed it for the past month so I want to get them there today. We are skipping tee ball practice though. I just can't do it!