I'm feeling downtrodden and yet tenacious. It's like the Yin and Yang. Negative and positive. Dark and light. Downward and upward. Cold and hot. Psychotic and psychotic.
The EI eval went fine and we qualified. Yay. I thought it would feel better, but it seems that one more person gently trying to tell me that Z.'s scores would be "low, but don't worry about it" shoved me right over the edge. Z. is having a bad day.* The woman who evaluated Z. was pushy and really opinionated and developed a "big picture of what was going on" with Z. awfully quickly IMHO. Plus she bugged me. So we will now meet again and create our IFSP (Individualized Family Service Plan) and I will HOPE that she does not turn out to be our OT. Because that would be bad.
Then the visit with the pediatrician went exactly as I had feared. No fluid in her ears. Oh, a little tiny bit in the one, but not enough to do anything about. So we wait. We have a return engagement with the pediatrician in 3 weeks, at which time I will kindly request that she check Z.'s ears. If they are clear we will schedule another hearing exam. If we do not pass the second hearing test with an A+++ I will request that we go ahead and have the BAERS. If they refuse we will move along to seeing an ENT. I could probably see the ENT now on the off chance that he/she will see something that Z.'s ped did not as my kind readers have suggested. However I am having parental guilt already about going behind her back to the IA Clinic (which I think did hurt her feelings a bit) and I just can't go behind her back again this soon. I really like our pediatrician. She has not steered us in the wrong direction yet.
The funny thing is that the EI evaluator this morning (Mrs. OverConfidentBossyPants as I like to think of her) went on and on about how fluid in the ears could be affecting all sorts of things (like balance and speech and swallowing) and be a reason for some of the delays that Z. has. I personally was quite sold on the Fluid In The Ears Theory. (Sort of like E=mc2 but slower with more waxy build-up.) It's easily treatable! It will change everything! Z. will be standing in no time! And walking! And speaking in full sentences! But all of that fluid-in-the-ears goodness will have to wait because, well, presumably she doesn't have any fluid in her ears. We will wait for her to get some and then perhaps progress can be made.
We've met with 6 doctors/therapists now and all of them had lots of good advice for us and all of the advice was different and pushed us in different directions and some of it even conflicts with each other! How grand. It's up to us to sort through it all and figure out what to do next. I am sure that this is par for the course in situations like this and eventually the confusion and the information overload and the gazillion well-intentioned contradictory therapeutic suggestions and the little teeny tiny bubbles of panic (so small you need a microscope to see them) and the parental self doubt and the urge to scream WOULD SOMEONE WHO KNOWS SOMETHING PLEASE TELL US WHAT TO DO NEXT at the top of your lungs all resolves itself and things are much clearer. At least I'm hoping.
So Thank God It's Fortified. (Because Friday ain't all that great.)
*Z. is really shut down today, showed the evaluators ALL of her poor social interaction behaviors, and wouldn't pull the dumb string to get the toy. I tried to tell Mrs. OverConfidentBossyPants that the toy from the last evaluation was better and so Z. was more interested, but she just looked at me sadly and made a note on her form. It probably said, "Mother pushes child to perform under pressure and lies about capabilities. Psychotic tendencies probable. Encourage mother to seek professional help."
Posted by grrlTravels at October 21, 2005 3:21 PMI have been waiting for the last 35 years for someone to tell me the right thing to do with my children. I got lots of assvise but no one seems to have "all the right answers". You do your best and hope that it all works out. That's what every parent does. You are certainly doing the most that anyone could for Z. If I had a magic wand and knew all the words to "Bibbity bobbity boo", I would be your fairy godmother and make it all better. Instead all I can do is offer encouragement and lots of prayers for your whole family.
Posted by: carosgram at October 21, 2005 4:29 PMI know the subject isn't funny, but your delivery cracks me up. The notebooks!!! I couldn't bear to see what doctors write in the notebooks!!!
Posted by: kara at October 21, 2005 5:02 PMOh man, I feel for you and all you are going through. It is so hard to figure out when you're getting so much different advice. You're doing such a good job for little Z. Take care.
Posted by: Janet at October 21, 2005 5:34 PM
Thinking of you, K, E, and Z. And letting you know that every child has good days and bad days and I too know firsthand the sad look evaluators give you when you tried to tell them your child does something your child does not/will not demonstrate at the time. I wanted to say "but it's TRUE!" but didn't, thinking/knowing I would only sound more desperate/pushy/untruthful the more I pushed it. I almost felt like someone accused of having a drinking problem and when I denied it, being told that denial is Step One. Dammit - whose on first?
Posted by: chicagomama at October 21, 2005 5:39 PMI meant to say "Who's on first". Now I am really pathetic...grammar/spelling issues on parade. ;)
Posted by: chicagomama at October 21, 2005 5:41 PMWriting in my notebook with serious, frowny look: "hmmm, Chicagomama claims to be able to form contractions correctly. Suuuuure."
A, I know I said you were a stud last time, but allow me to say your coolness grows by the day. You are doing such a fantastic job. No matter what the outcome of the testing, you are the best mommy Z could ever ask for. Hang in there.
Posted by: Amyesq at October 21, 2005 6:00 PMOh, man. I have lots to say, but . . . I'll just say that you're doing right by your daughter. Don't ever worry that you're sticking up for her too much - no one is as invested in her well-being as you are. (And any evaluator worth anything will listen to the parent's assessment of what the child can do.) Sending lots of good wishes your way.
Posted by: Brooklyn Mama at October 21, 2005 8:55 PMJust gotta say it: 'little teeny tiny bubbles of panic' is really beautiful writing.
assvice
Trust yourself with all these conflicting opinions.
/assvice (I really have typing that word.)
best,
bh
Posted by: bh at October 21, 2005 9:50 PMNothing like a good know it all to make you a little crazy. Fingers crossed that she won't be the therapist. And if she is, fingers crossed that she shapes up. I wonder if Z was just fed up with all the appointments by today. She's had a lot this week. So have you.
xx
F
hey there, i've been quiet but i've been listening. i still haven't thought of another food to try, but i think i will finally get to ask my mother in law this weekend (she only wants to talk to the baby when we can get her on the phone!). i'll let you know as soon as i find out anything new to suggest.
i think you are one ferocious mama and i know that whatever kind of hell you have to raise to get these folks to help babyzee, you will find the strength to raise it. and zee will be encouraged by it, even if there's no way for you to see that. trust your intuition.
Posted by: wix at October 21, 2005 11:37 PMare you taking care of yourself? go splurge on a facial, please. you need some time to yourself :)
Posted by: afrindiemum at October 22, 2005 12:24 AMYour brain must just be spinning with all this. I wish we could provide better support than simply words, but if words help you've got them all, A to Z. (And indeed you have because you are A and Z. Which is cool.)
Posted by: Jo at October 22, 2005 3:20 AMOh my goodness, you are an AWESOME MOM. Do you have some IRl people to cook you dinner and tell you in actual time how great you are? Because you deserve it. You're pretty damn great!
Posted by: Dawn at October 22, 2005 10:22 PMNo, am sure that is not what she wrote in her all mighty Notebook. If anything noting what you said. At least I HOPE the experts out there do indeed LISTEN to the parents. After all, who spends all the time with the child?
You are doing all you can for her, you can't beat yourself up over it. Just my 2 cents.
Posted by: cassandra at October 22, 2005 10:57 PMIf you could see me you would know that I've got my, "sympathetic, wish I could help, try not to be too discouraged" face on.
I love that you still have a sense of humor about it all (thinking of Ms OverconfidentBossyPants)
Hugs!
p.s I checked in the mirror and my "symathetic etc." face, looks remarkably like LSP's Popeye face - just so you have a visual.
Posted by: Debberoo at October 23, 2005 9:32 PMYou are advocating for your child and doing a fine job. You can request another OT-- there are usually several to chose from and YOU are the client/ customer. I just let go of one of my daughter's therapist because she brought her personal drama to our house. At one time I would have kept her, rationalizing, but now: no way.
Posted by: marla at October 24, 2005 7:26 PM