A girl can hope, right? I have to be honest, since I last posted, things have gone downhill. Autumn is having a very difficult time. I’m not sure exactly why. There are probably many reasons. But she is definitely not herself and it’s driving us all insane! She’s grouchy, disobediant, and defiant. We have tried everything. We’ve done behavior charts, positive and negative rewards, cuddling, coddling, sending her to her room, and just plain yelling. (Not cool, I know.)
Part of the problem comes from her being unable to regulate herself. She doesn’t get hunger pangs. She gets full on, “I’m starving! Feed me NOW!” pangs. I try to keep her fed, but as she’s growing, it feels next to impossible with what she can tolerate eating. She mainly tolerates carbs. A meal for her consists of PB&J, whole white milk, and a banana. Not too bad. But it doesn’t keep her full for long. (And although you will want to, and I know you will. Please refrain from offering suggestions unless you feel it’s truly revolutionary. Believe me, I’ve tried EVERY trick under the sun.)
The other problem really IS the weather. It is getting very fridgid here in Michigan. We’ve had to get her to wear long pants and long sleeves. This has taken more time than you can imagine. About 3 weeks to be exact. But she’s wearing them. We now have to tackle shoes and socks. The only shoes she can tolerate are Crocs. Most likely we will resort to wearing Ugg-like boots with no socks to and from the car and then taking her Crocs with us wherever we go. Oh the lovely stares I get when it’s 2 degrees outside and my daughter is wearing shoes with built-in ventilation 
.
The good thing is that I know in my heart progress is being made. I just takes time. I think I need to plan a Hawaiian spa vacation to keep me going though! I feel so burned out right now.
November 10, 2008 at 11:26 pm
what happens when she gets older? does this supposedly get worse/better… are they able to cope and live on their own, etc.?
i’d say the weather has a lot to do with it – i mean it severely changes/affects my mood, so i don’t see why it couldn’t apply to autumn as well.
is it that she doesn’t *feel* full or that she really isn’t full? if she doesn’t *feel* full – i don’t think it’s revolutionary, but i imagine that fiber tablets would help with the feeling of fullness. of course you couldn’t get too out of control because it might make her use the restroom more but they’re pretty harmless, from everything i’ve always known/read.
if the problem is that she really isn’t full – because she’s eating carbs and not much protein, if she gets hungry enough, will she eat what is in front of her? under the advice of a doctor, would it be possible and not inhumane to make her wait for her food (give her a glass of milk / as much water as she wants) until say noon-time and then she would be hungrier & at least try something new? or is it so bad that she’d continue to go hungry?
i really don’t have as many suggestions as i do questions, but i can imagine you are burnt out and tired. what about home health care for problems like these? seems like it should be offered for free, really…
November 11, 2008 at 12:07 am
Wow. Great thoughts, Kalen. Let me see if I can answer all of your questions. As she gets older, she will naturally have more coping skills to deal with the tactile defensiveness. So in a way, she will kind of outgrow it. Also, I will never give up trying to find a cure for her. She will definitely be able to live on her own. It doesn’t effect her intelligence or physical ability to manage life. It just makes life difficult for her.
I haven’t thought of fiber. That’s a great idea. I’m actually going to try that. We don’t let her eat all day long. We do offer milk or water if she’s recently eaten. I think she gets hungry faster b/c she mainly tolerates only carbs. I try to give her protein at each meal in the form of string cheese, peanut butter, or milk. Those are the only proteins that she can tolerate.
By tolerate, this is what I mean; she has extreme texture aversion. It is not advised to withhold food. Kids w/these types of aversions will literally just starve. We are 90% sure Autumn’s texture aversions are due to allergies. This is common. She is undergoing treatment for these allergies and has already improved the variety of foods she can eat. It’s not that Autumn doesn’t WANT to try new foods. She has literally cried b/c she can’t eat broccoli. She has tried lots of foods. She gets them in her mouth and throws up everything in her stomach in a matter of seconds…all while crying b/c she couldn’t get it down.
I have thought of respite care. I might have to look into that just to get a break!
November 11, 2008 at 2:17 am
Hi Christy–I just discovered this blog. Saw a link to it on facebook. I’ve been reading through the site for the last hour. I’m so sorry for the difficulties you have all been through. Thanks for sharing in this way…
November 11, 2008 at 1:10 pm
awwww…. i had no idea that she was actually *wanting* to try the foods. that’s really upsetting. but i’m glad to hear she can outgrow this & learn to manage it better. i wasn’t sure if her living without assistance would make her far too stressed – of course, with as beautiful as smart as she is, that assistance could pretty easily become a spouse instead of a parent, anyway.
and in my opinion, you are one tough cookie… and you’re one of the best moms i’ve ever known, but i want to make sure & be that outside encouragement that says getting help is okay & may be exactly what you AND autumn needs. you’ll have to keep replenishing yourself so you have more to give, as well.
thanks for answering all my questions
i was super curious about a lot of it.
February 9, 2009 at 11:54 pm
I just happened upon your site and was reading through some posts. Autumn’s disorder sounds really tough for everyone. I love food and I don’t know what i’d do if I couldn’t eat certain things, so this one really caught my eye. I know you all make sure she gets all the vitamins and stuff she needs, but Kalen’s fiber question got me to thinking about iron as well. If she doesn’t eat a lot of meat and stuff like that, does she take an iron supplement? Does she eat fruit and stuff? Green grapes were our favorite when we were little, they still are!
February 10, 2009 at 12:24 am
Jess Ann,
Great to hear from you! Thanks for commenting! Autumn doesn’t eat any meat or any vegetables. I’ve had her iron tested as well as many other minerals. Surprisingly she is in normal ranges! Right now I’ve found a protien powder that she likes. I mix it with milk and chocolate syrup. It has 18 grams of protien. She’s drinking one daily. I really think it’s helping her. Also, we are seeing a speech path this Wednesday who is supposed to be able to help with the eating issues! I haven’t been posting here lately b/c I’ve been focusing more on my other blog (http://www.meechimom.blogspot.com) just for sanity’s sake. Hope you’re doing well!