feeling overwhelmed

rslhmg

Between the holidays, all of us being sick (dd included), and dd having an exceptionally rough week, I feel like I'm at the end of my rope. I feel like I have been harrassing the specialists office and running down any leads he can offer for some kind of help with dds needs since we got told we are wait listed by the office we were reffered to originally. I know everything has been closed for the holidays or booked up well in advance, I'm trying to be understanding of the fact that a difinative diagnosis is still a ways off, and that there are wait lists, but I'm struggling with trying to help dd and not having any idea how to actually do that. We don't even know what kind of help we need to get pointers. I'm not sure we can even take advantage of some of the wonderful advice I've seen on here because we just don't know what she needs. I am starting to feel like I'm going to need therapy by the time we get on the right track for dd. How do you deal with the being in limbo part without completely losing it???

bethann3181

I don't have any good answers for you, but wanted to tell you that you are not alone.  Christmas with DS1 (who has high anxiety, but no other official diagnosis) was seriously so frustrating and not fun at all.  I'm at a total loss today how to help him for the exact same reasons as you.  Again, you're not alone, and I'll look forward to the answers you get.  Hugs.

rslhmg

Thank you. It's comforting having a place to turn, even if it's just to vent frustration about not knowing anything. Our friends and family try to be helpful, but when we turn to them for support they are either as lost as we are, or tell us it's just a phase because they experienced one or two things we deal with and their child outgrew it. It gets really irritating having to explain over and over that her developmental specialist agrees with us that this is not normal behavior, there is actually something going on that we are working our tails off to get evaluated and diagnosed.

bethann3181

I have actually really limited talking to people about DS for this exact reason.  If I heard one more "he's only THREE!", or "So and so's kid didn't do XYZ until they went into grade school", or my MIL's comment over Christmas when DS was throwing an absolute fit over opening presents, and DH made a comment about the pressure of the situation with everyone watching him and our DS2, "Every kid is made from their own cookie cutter.  He's FINE".  Auntie made a great reference some time ago (I have been a lurker for a while), saying, "If you aren't on the Auntie train (of being supportive of her son's issues), get off, we're leaving you behind."  Or, something like that.    But, it stuck with me, and as everyone says, you know your child better than anyone else.  You're doing the right thing.

rslhmg

We didn't discuss DD's issues at all until recently when we got confirmation that there is an issue. Until the 5th, when she had her final developmental appointment from being preemie, we had our concerns, but were still hoping it was normal toddler behavior, and probably in denial. My MIL was actually one of the only people we discussed it with because she brought concerns to us about behaviors she was seeing when she watched DD, prior to that appointment. We had some sensory issues diagnosed when she was around 6 months, at the time they were attributed to her prematurity, which meant she had a very real possibility of outgrowing them, those initial issues faded away for the most part, but others popped up in their place and the couple that stayed escalated in severity. I read somewhere (can't remember if it was here, or via "dr" google) that can happen with sensory disorders where symptoms show up in one way and then appear to go away, but return as something else. We are, currently, waiting on an eval for a mood disorder and/or sensory disorder, her developmental specialist suspects a combination of both, but because she IS only 18 months, if there is actually a mood disorder we have a very long road ahead before we get a diagnosis. We have been dealing with these issues in some form or other for 9 months now, so even though the actual process we're going through now is new to us, the situation isn't at all and only got more difficult as she became more mobile. I want to read everything I can about sensory disorders, because the more I read from other moms whose kids have them, the more the story sounds the same as DD or eerily similar, but I'm worried at the same time that I might be putting the wrong answer in for a diagnosis just to have an answer.
I think I veered from what I was meaning to respond quite a bit, what I was going to say before was that with it only being something we have shared recently with the rest of the family and our friends, I feel like it might be them trying to wrap their heads around things. Most of them haven't actually experienced her meltdowns at full intensity since taking her anywhere on a bad day is extremely difficult, and visits to our house tend to be short (we don't have space to accommodate much company). I am hoping that they are in denial themselves, I know we have days we don't want to believe anything is wrong, and we've been dealing with it for months,