I'VE HAD IT, I'VE HAD IT----Long
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|Wed, 11-24-2004 - 5:25am|
I think I need to seek some sort of therapy but I can't go without taking Makenna and then what would be the point because she would freak out. :(
Ok, so Thursday I got her to take some steps in the grass (mentioned in my brag...thank you to all who responded by the way! I meant to reply but this happened and I've been losing my mind ever since). The very next day she completely changed. I at first thought it was due to over stimulation from the day before but she has kept it up and the OT assures me that over stimulation would not have lasted this long.
She's always freaked out if anything touches her (hair, lint, fuzz ball...or even us) but starting on Friday she now freaks out if there is anything on the floor or anywhere near her even if it is NOT touching her!! I'm talking she will be sitting on the couch and start screaming bloody murder and shaking and reaching for me. I can't even figure out what she is so upset about unless I look closely at her eyes and follow them all the way to this TINY little piece of string that isn't even near her. She now does this for anything! If she see's a fuzz ball across the room, she will scream and go nuts until we physically remove it and even then she has to hug on our necks for a good 10 minutes to calm down!
She loves to walk outside on the sidwalk but there were leaves on the sidewalk and she used to just step around them (she was always aware they were there and would never step on them but didn't freak) but now she screams bloody murder until I move them all out of her sight! There is no other option! We've had to start vacuuming 3 times per day just to get up microscopic crap I can't even see but she CAN! And she wants the cats to lay in her lap and roll around but then when they shed she freaks out (even if it's not touching her).
The OT is bascially at a loss other than to say it's either that she's advancing cognitively so that she is aware that even if a fuzz ball is not touching her right then, it still poses a threat and could touch her later OR she thinks it's all purely behavioral because we've positively reinforced the behavior by always removing the item. I don't think we've reinforced the behavior because we never had to move it before unless it was touching her so this is change that happened over night. I don't know what to freaking do man! The OT is the one who always told us to try not to stress her out when it came to sensory stuff so we took care of what was freaking her out. Now she's telling me this may be OUR fault. I know she doesn't really mean it that way but that's the way I take it.
I'm pretty much irritated at all times, angry, depressed, and just want to give up. I'm stressed beyond words. At this point I don't think she is normal, will ever be normal, or will ever get better. And I get angry at people who tell me she will grow out of it and to stay positive. I know they are trying to be supportive but it feels like they are dismissing my feelings like I have no reason to stress and I should just happily struggle through this because they are SO SURE it will change. How can they be sure? She's had problems since birth and now she is 20 months and things have only gotten worse. What in the he** has happened that they can just be so sure she will be fine? Optimism is great for people who are not TRAPPED IN THE HOUSE 24 HOURS A DAY WITH A CHILD THAT IS BEYOND DEMANDING! What is the point of doing brushing if she is not only getting worse, she's doing things she NEVER did before??? She also seems "irritated" all day long. She'll want up in the couch and then immediately start doing her "uh, uh, uh, uh" for something else or to get right back down. When I put her down, she freaks out urgently going "uh, uh, uh" wanting back up. So, ALL DAY LONG--and I am NOT exaggerating--I hear "uh, uh, uh, uh, uh" in a half whining half screaming voice because she is constantly wanting something and is never satisfied and "AHHHHHHHHHHHH" blood curdling screaming because there is a lint ball, fuzz ball, cat hair, hair, string, etc somewhere just staring at her daring her to walk near it.
I'm telling you girls, it's so bad now that my dh (who has the patience of a saint and never gets frustrated with Mak) says he can't take any more of this and looks forward to going to work every single day! And it doesn't matter if he is home because she is obsessed with me and he can't even pick her up to take her away from me to change a diaper or brush her teeth because she has such a HUGE meltdown. As soon as I walk into the room to try and help out dh, she begins to calm down. So, it's everyone's advice that I need "time to myself". Yeah, sure, I'm not an idiot, I KNOW I need time to myself but it's freaking impossible now!
What bothers me the most is that I let my stupid guard down and WAS thinking positively with high hopes that things were getting better (VERY SLOWLY but at least they were improving) and the OT was FINALLY going to start doing more therapy (like the therapy ball) but she has now put that on hold because Makenna hugged my neck tight the WHOLE session today because the lining inside her pant seam had a tiny dangling string. I snipped it off but it didn't matter at that point, she was freaked and nothing would work except changing her and even then she had to stay in my lap for comfort.
I feel so alone in all this. The OT says she has never seen any other child like Makenna and is frequently at a loss. She said today, "The only thing consistent with Makenna is that she changes drastically all the time." Does anyone know how stressful this is? Changing drastically for the good is one thing, but that's not what she does. She changes for the worse. I'm waiting on an appointment for an evaluation to see if there is anything besides SID going on. I used to have a "plan" but now am just caught up in the whirlwind being slammed around and am beyond stressed. I just don't want to deal with this crap ANYMORE! I'm tired of walking around the house removing microscopic fibers so my daughter can be in the same room and running around like a chicken with my head off trying to figure out what she wants because ALL she will say is "uh, uh, uh" If I hear one more "uh, uh, uh" I'm going to slam my head into a wall. :(
Shanna & Makenna (20 months)