I wanted to go ahead and formally introduce myself. I think we will be hanging out here a lot more now. It took me a few days to process all of the information, but I think I'm finally at a place of acceptance. Regardless of whatever dx we end up with, or for that matter WHEN (childrens has still had no contact a week later...), LO is different.
A tremendous thank you for everyone on here who drilled contacting EI repeatedly. I can't tell you what a struggle that was. The first person I contacted through the 1-800 number told me they only helped with bills (complete WTF knowing what I know now) and even though I was near hysterics at that point I repeated the question of "So you are telling me Help Me Grow does nothing with evaluating or starting services" and he told me absolutely not. I went on to fill out the online referral and heard nothing back. Finally having enough I called my county number over the weekend and on Monday getting an answering service both times. I tried calling a neighboring county and they answered and told me that the number I had for my county (found in 3 different locations that I looked) was outdated. When I tried the updated number it as the same answering machine message, so when I called back to the neighboring county I was told that it could be due to veterans day (wow...never occured to me, my entire world had stopped but I guess the real world is moving forward).
Finally, finally, finally I was able to be in touch with someone from HMG in my county and they are coming out to eval LO Monday morning. I feel a sense of relief knowing that maybe...just maybe some help is coming. I'm still slightly miffed as to why a pediatrician would never suggest contacting these folks, but so very thankful for everyone here who pointed us in that direction. They drill getting help for ASD kids as early as possible but then it seems as if they have basically said "Well, your kids messed up, we'll call ya' when we feel like it." - sorry thats a bit of a vent. But really, if you are in the middle of a crisis, having no one at all to reach out to and no reassurance is a horrific place to be.
In regards to our family, we started reaching out. I wanted to be private as long as possible, but LO's birthday is coming up and so is thanksgiving. I knew that as sensitive as I was that an innocent comment about her behavior could send me flying off the handle, so we made the decision to share with DHs family. MIL has called me crying a few times but is very supportive, and my SIL whom was the first person I shared the news with in the family sent me an amazing message that still makes me tear up when I think about it. My own mother and I have a rocky relationship and I just haven't been able to bring myself to tell her yet.
We have swapped out some of LO's toys, and made a big effort to engage her more. I find that when we sing songs (most of which shes memorized anyway, even if the words and hand motions aren't perfect) she will hold my eye contact throughout. She enjoys it and I think its a start. I have been trying to show her different ways to play with her toys (swing the dolphin, make the bear go downt he slide) rather than just repeatedly hitting the buttons to make the noises. Its hit and miss but she seems receptive at times. Naptime is a complete nightmare still, she has no desire, but the more tired she gets the worse her behaviors are. I remember telling the CNP before that she could throw hours long tantrums and the reply being, "Oh well, she shouldn't do that."..... okay, that really changes things for me, thanks for the help. She used to scream through bathtime as well, but last night I climbedi n with her and it seemed to help significantly.
One thing that does give me some hope is something that improved months ago, but makes me feel like she does have a chance at improvement. When she used to fall down, or drop something she would come over and slap me across the face. Now if shes hurt she will let me console her...that was huge for me. Recently she will "pretend" to fall and then say "Uh-oh, Okay?", or drop something and do the like, but it still seems like something to celebrate in my eyes. Also, although she prefers to still carry something (q tips, small plastic parts) in her hand, she will occassionally now come and hand them to me, I think its because I say "Thank you" and she likes the face I make, but its still something, right?
Sorry this is insanely long, but I need an outlet where someone understands. Its nice to share with people who can relate, rather than ask for all the reasons why we think LO is atypical.
Finally- I'm RDMaggie, I'm 27 and I work as a crisis care nurse prn with my local Hospice as well as having another prn position at a chronic care facility.
DH is 35 and works in the quality department at a factory on 2nd shift, we just celebrated our 4th wedding anniversary and 7th year together. LO is 22 almost 23 months old. She was the product of a planned, uneventful pregnancy, and I brought her home Christmas Day of 2010...She is the very best thing that has ever happend to the both of us...typical or not.