Lots to Tell

Things are beginning to become really interesting again. Something about this time of year. Someday it would be nice to just deal with ordinary holiday stress again instead of IEPs, medical issues & housing issues and the like. Apparently this is how life works and I just need to learn to enjoy the good and ride through the rough. Easier said than done. Sometimes it just seems like too much piles on at one time. All I really want to do is whine a bit but no one really wants to hear that, although that's completely understandable. Well, you poor souls that read this are going to be subjected to my laundry list of vents and whines. I'll try to keep it short, but apparently I'm emotionally repressed and I plan to use this blog as my mode to remedy that today. More on that emotionally repressed thing to follow - hahaha.

• We are in the thick of deciding what is best for Elise with the school district. As probably all parents who've been through the IEP process would agree, this is very stressful and often contentious. I have to give it to the school district. They are trying to successfully walk the thin line between not offering everything Elise needs but enough to keep us from going to due process again. It's not like we want to go through due process again. I mean, really, in the end all that got us was 8 months with no education for Elise, a bunch of compensatory hours we never were able to use and a 1:1 aide that was spotty in her appearances and spent half the time "fading" from Elise as support. Add to that months of stress. On the plus side, Elise has been happy with school and we've seen progress in the last two months. We've also learned that a class of 23, even with an aide, is probably not the best placement for Elise until her communication skills improve. I'm almost beat down enough on this round to just agree to avoid due process. However, I have to remind myself that it's not acceptable for Elise to receive less just because I'm worn down.
• We're going to be homeless in 53 days. Ok, that's an exaggeration. 7 days ago we received our 60 day notice to vacate because the owner has to sell the house due to divorce proceedings. I don't think it'll sell quickly and I don't think it's that easy to get rid of tenants. Either way, we need to get out of here yesterday. We've been talking about moving forever and this is the kick in the pants that we need. See, another positive to a bad situation. We're working to buy a home if we can get a loan. Otherwise, we'll have to move to another rental. We're definitely hoping for the former as I just want something of our own.
• The property manager is a very pushy woman. She actually has the nerve to ask us to clean the carpets in the home so that it'll show better. What? They were cleaned in July, just to clarify that we're not living in filth or anything. However, we do have a dog and 3 small children - 1 of whom is newly potty trained. Add to that multiple consultants traipsing through the house daily who may or may not be wearing shoes. It's cheap quality carpet and old so, well, it gets dirty quickly. Needless to say, we're not spending a couple of hundred dollars to help the house sell quicker. What's in it for us? This is a fight that I've latched onto because it's actually one where I know I'm right and I have some control, unlike the other stressors we're currently experiencing.
• I've been in continued periodic pain that is interfering with work and caring for the kids and our house - maybe that's why the carpet is dirty? :p It appears that my gallbladder was not the only culprit to my pain. The pain I have is happening more often now, last Sat, Mon, Tues & Fri. The pain is very sudden, intensifies quickly, lasts several hours, is not overly responsive to painkillers and basically, hurts like hell. When I'm in the thick of it, I am completely unable to focus. People talk to me and I hardly hear them. I went to the doctor Wednesday in search of help. He spent a grand total of maybe 3-4 minutes with me during which time he smirked, half-listened and told me to try a probiotic, cut out dairy, and that it was likely Irritable Bowel Syndrome. I asked whether it was possible to have IBS when you have no bowel symptoms. He responded that that would be unusual. Really? Could it just be a misdiagnosis since I literally have no symptoms of IBS except abdominal pain? Augh. The appointment was a waste of my time and energy.
• On Friday, the pain was really bad. I resorted to contacting my alternative medicine doctor for help. There is where I discovered that apparently I'm bitter, judgemental and emotionally repressed. Gee, thanks for clearing that up. While all of that may be true, I seriously doubt that one can experience that level of pain intensity due to emotional repression. At least this doctor is trying to help. However, the search for help is to be continued. At least I feel great in between pain episodes - that's my positive spin again.
• Elise has been acting weird again. This is perhaps the most disappointing thing of all. She has been having episodes of hilarity frequently again. This is where she falls into peels of laughter at God knows what. It's very bizarre looking and frankly resorts in more than a few stares when we're out and about. I know I shouldn't care about that, but I do. Interestingly, she hasn't had probiotic for 3 days and she's been having sugar treats still. I really think there's a link here. Tomorrow my mission is to purchase that probiotic. Apparently for both of us since according to idiot doctor on Wednesday this may magically heal my pain.

Well, that is my "short" vent. I actually feel better. I hope I haven't lost everyone as readers in the process. I swear that the next post will be more Elise-centric as that is the focal point of this blog. While she has been acting weird again, she has had the following positives:

• She is becoming increasingly spontaneously verbal. She's not really saying anything new, but she is more often using words to express herself without us prompting her to use her words. This is a huge first step for her.
• Elise has begun to laugh at her brothers and tease them. Last week, she kept putting her feet on A's shoulders while they sat on the couch together. This resulted in A whining and complaining. This seemed to inspire Elise to continue (such a normal sibling behavior - yea, Elise). It eventually resulted in A howling which Elise now thinks is hysterical. She laughs when A or B start crying loudly. It's actually quite amusing and makes it difficult for us to be serious and tell Elise that they are sad and she shouldn't laugh. When you look at it from an autistic brain perspective, their complaining crying must be riotous. What I mean is that Elise's sees things very literally and will likely only know empathy as something that she is specifically taught. Hence, the reason we have to explain that A and B are sad and that Elise shouldn't laugh at them. To imagine what it must look like to Elise is funny though. Imagine seeing how they make those funny screwed up faces, jump up and down, scream. Well, it would be funny if you didn't relate an emotion to it. Either way, it's showing an interest in her siblings instead of just ignoring them.

See, I managed to end on a positive note. Next week I'm on my own with the kiddos as hubby is going out of the country. We're attending a Thanksgiving dinner at my friend's house. There will be over 40 people there. Poor Elise! I'm insistent that we not alter our lives too much and become reclusive because social gatherings are overwhelming for her. Therefore, we're going and we'll have a good time. She will deal and it will be a learning experience for her.

Until next time.

Almost 4

So, Elise is turning 4 this Monday. It should be a day to celebrate, but instead it's really sent me into a deep funk. It feels like time is slipping away too fast without significant improvement. I try to focus on all the little improvements and stay positive, but when I step back and look at the big picture of overall development, I feel like I'm falling apart. It doesn't help that this birthday milestone coincides with a comprehensive evaluation by the school district. I've mentioned before how "well" Elise does on evaluations - not. Dismal is my expectation for those reports. I spent an hour (of work time, no less!) on the phone with the school psychologist who is observing and evaluating Elise. We went through the same old thing about her history. Nothing like bringing the tragedy of watching us lose her all back to the surface. Then, we get into what he's observed and more specifics of what we say she is doing developmentally. Of course, this is always where there is a vast disconnect. Elise does way more for us in the comfort of her own home and routine than she does for the strangers observing and evaluating her. We're not stupid though, we realize these differences are chalked up to the fact that we're madly in love with her and see it all through rose colored glasses. Probably the truth lies somewhere in between, but I believe it's much closer to our side.

I'm just really scared and worried about what the IEP will involve this time around. I just want the best for her and it's such a battle to not have her seen as cognitively impaired. Everyone, without exception, who has worked with her for any length of time recognizes that she is very intelligent. That intelligence is just locked really tight inside her right now. I don't want her sent down the wrong path because she's unable to demonstrate that intelligence. Sigh, it's just a hard time right now.

Elise has actually been stimming a lot lately and has been more irritable again. We think this could be related to the Sertraline she's taking every morning. The oral syringe we use to dose Elise has had the numbers and markings mostly worn away. We think it's possible we've sometimes given her .05 or even .1 ml too much Sertraline. We know that can make her irritable. We've been searching for a place to provide us with a 1 ml syringe. This is not as easy as it sounds. Our pharmacy says that they don't have one. When I asked how I was supposed to dose her .25ml properly when the first marking is .5ml, I was told that "Well, you just measure halfway to the .5ml marking." Duh.....as if I couldn't have figured that one out. Apparently it didn't occur to this pharmacy individual that this methodology wouldn't provide consistently accurate results. On to the internet search. We found 1 ml oral syringes on the internet, but we have to buy by the 100 and the cost with shipping is $35. I didn't get far enough along to see if lay people can order without doctor referral. I contacted Elise's pediatrician to find out if she had ideas what we could do. She told me that they have 1 ml syringes they use for TB tests and that we could just remove those needles to use as an oral syringe. She offered to mail us a couple but I told her we were going to be down the hall from her office for Elise's speech therapy the next day, so we would just stop by to pick them up. That day came and Elise's nanny stopped by the office. The office staff gave her two 5 ml oral syringes. The nanny knew these weren't correct and asked for the smaller ones. The staff told her that she'd have to wait until they could speak with the doctor. She was unable to wait because she has to get home to take care of the boys (hubby and I both take late lunches on Elise's speech day to cover childcare between us for the boys, so time is tight that day). To end this long story, I e-mailed the doctor again and she will supposedly have the correct syringes for us when Elise next goes to speech on Friday. Of course, this means we've gone yet another week without being certain that Elise is receiving the correct dose. Even the simple things are difficult lately. Last time, I obtained a 1 ml syringe from my dog's vet's office. They were very accomodating. I don't know why pharmacies and doctor offices are so guarded about sparing 2 of these. I mean, I wonder if I just said that I need them to ensure I shoot up with a clean needle, if I'd be issued them without question. Of course, child services might then show up the next day - there's a flip side to everything.

I guess this has been a big complaining post. We're just starting to skirt the downward slide again. I'd love to see some positive noticeable improvement from Elise again. However, the progress has leveled again and with the increased stimming, it seems like she's somewhat going backwards. That said, we have been asking a lot of her lately. We took her to a few different Halloween events that were crowded and crazy. I guess we're lucky that she can handle attending those things, even if it does overwhelm her and cause her to want to retreat into her own little autism world.

Oh yes, I'm fully recovered from surgery but I still have very similar debilitating pain 1-2 times per week. Seems as though it's still biliary colic. I should go visit the doctor again, but I'm managing to keep the pain at bay with the leftover painkillers from the surgery. When an attack suddenly starts, I take one and recover an hour later instead of continuing in pain for 3-4 hours. It's working for now.

All of these hassles and complaints pale in comparison to what my aunt is going through right now. I know you read this blog and I want you to know that I am thinking of you and praying for you.