Resolutions

Finally things are beginning to come together for us. Elise has had a fantastic week, despite being sick and missing two and a half days of school this week. It's just a cold and she's recovering well. She's been quite "on" lately. She's engaging easily with us and even with her brothers. She has been laughing with them now. The key word in that sentence is with. She had started laughing at them, but now it's become with them. This is a huge improvement and a significant development in my mind. She can test the waters of peer relationships with her brothers and hopefully then expand that to the wider set of other children she meets. She has also been expressing herself by attempting words much more frequently. She really has the idea of how to communicate, now she needs to work on the physical ability to do so.

The other resolution, hopefully, has been with my health. I had an ERCP performed Wednesday that removed a stone from my common bile duct. This was good timing as my liver function test was not good and the pain was becoming quite frequent and severe. I have had none of the same level of pain since the procedure. A stent was put into the duct and I'll have another ERCP to remove it in 3 months. I am still very fatigued and occassionally have a sharp quick pain that takes my breath away momentarily. I'll have a repeat liver function test next week and a doctor follow-up the following week. Hopefully this is the end of this chapter. The boys have been asking when I can race with them again. Right now my energy is sapped from walking to the car and back! However, having the extreme pain gone is a tremendous blessing.

The biggest resolution has been with Elise's IEP meeting. It's wonderful to have that weight off our shoulders. She will be starting in an aphasia classroom M-W-F from 8-12. She'll have transitional support of an aide for the first week. She'll also receive 40 hours of speech from a non-public agency for the next year. For occupational therapy, she'll have 1-2 hours per week (can't remember which one) that will occur at school in their gym. She'll also have an adult on the playground to facilitate her engaging with peers and for her safety. Not perfection of what we wanted, but budgets are tight and overall it's a decent deal. We're asking for a behavioral assessment to be performed in the new classroom setting. We're concerned about how she'll do with no dedicated aide and a 4 hour day of hard work. She may exhibit more problem behaviors in this setting.

Finally, we are fully into the process of looking for a home. We're waiting to obtain a pre-approval letter and then we will begin shopping. We met with our realtor today and have a bunch of listings to see. The prices look good right now and the interest rates are also good. It seems that we may have very good timing, even if we're only doing this because we'll possibly be homeless in a few weeks if we don't. We're excited to finally buy and have a home of our own. How refreshing it'll be to paint the walls a color of my choosing instead of the dreary dingy standard "white" of all our rentals. I'm not looking forward to having to be responsible for repairs, but the ownership side of things is appealing otherwise.

Anyway, while this is still a very stressful time, things are coming together nicely right now. It'll be nice to get some of our stressors temporarily resolved before the new stressors begin - hahaha.

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.

Big Day

Today we are going to a Halloween birthday party with all 3 kids. The mother has turned an entire unoccupied rental house of hers into a Halloween house theme, I think complete with fog machines, etc... It should be a lot of fun, but possibly very overwhelming for Elise. We're hoping that she does well. We had asked for a consultant to accompany us, the first time we've ever had a specific request like that. We have really bad timing because the agency decided to do a mandatory training session for its consultants today, so there is no one scheduled to help. We'll manage fine, it just means we won't be able to enjoy the fun with the boys as much because we'll be helping Elise cope.

My recovery has actually not been as easy as I anticipated. I returned to normal activity after about 5-6 days, but I think that my "normal" activity level is probably higher than most people since most people don't have the instense schedule that we have. Keeping up with almost 4 year old twins and a 5 1/2 year old, all in 3 different schools and 1 with 6-8 hours of therapy each day all while working full-time is probably not "normal" activity. Oh well, it's my normal, and I think returning to it has been more difficult than I thought it would be. I'm just so tired all the time. Yesterday, I took A to karate class. It's a parent-child class. I haven't done karate for 8 years now. I thought I would go and "bag" it. Well, I still have the karate bug and was incapable of doing a halfway effort. It was really fun to get back to it, but perhaps a bit early! I guess I've missed doing fun things like that for myself.

Elise had a doctor visit last week. We will be slowly doing the following:

1. Ensuring that she takes her Sertraline each day at the same dosage level by squirting it directly into her mouth. We used to mix it in orange juice and I think she didn't get it all everyday. Poor girl, the taste alone is pretty nasty based on the face she makes. I suspect this drug is not working well for her as we've noticed her more irritable since we began doing this and that's a side effect for Sertraline. We're going to watch it for a few more days.
2. Once we know how the Sertraline is going, we'll increase her Abilify to .4ml per day instead of .35ml. If all goes well, we'll up this to .5ml eventually. Abilify seems to be a wonder drug for her.
3. We'll add Vitamin E to her supplement regimen.
4. We'll add L-Carnitine to her supplement regimen. I believe this may help with her constipation issues.

We're also changing her probiotic brand as this is supposedly a good thing to do every few months. She now takes a full capsule of probiotic each day. We've been doing that for a couple of months now.

I finally received copies of Elise's medical records. I've been working on the paperwork for the appointment scheduling for Dr. Michael Goldberg. I just have to update her written medical history from the parent perspective before I can submit the packet. After the records are all received and reviewed, we'll be contacted for an appointment. I sure hope this doctor will have some other good ideas for her. It is so difficult to get someone to look for the medical cause behind Elise's autism because it's so pervasive and there's no obvious symptom in her, such as some children that are having seizures or others that have persistant diarrhea or obvious allergies. Elise basically seems healthy, but there are some weird things like the fact that she has never had diarrhea a day in her life. Not even close, not even when her brothers and hubby and I have all been sick with some nasty virus. Seems as though she has an amazing immune system, except that she's sick with colds much more often than a typical child. Food for thought. I just need someone who will try to put the pieces together with me since I certainly don't have a medical background to do so alone.

Well, I should get back to playing with the children, you know, the "normal" activity level to which I should have already returned post-surgery :-)

Ay yi yi yi yi...

Lots of happenings again in the last few weeks, never a dull moment. Elise has continued to do well with her new intense schedule. She is definitely improving. Her grandfather is visiting this week and she's really enjoying him being here. She was so excited the night he arrived that she was awake jumping in her bed from 1:30 am to almost 4:30 am. I refer to Grandpa as the eternal optimist. I do see this as a positive quality, but not one I inherited. Anyway, he thinks she is doing a lot better and in this case, I don't think he's just being the eternal optimist, I happen to agree. He's noted better eye contact and overall engagement. It's been between 10-11 months since he last saw her. He also notices that she's much happier. We're just thrilled with how she is doing.

Friday I had my gallbladder removed. I'm still feeling uncomfortable from that and am a little surprised. I thought I would be mostly better by now. Hmmm...maybe some of that eternal optimist quality did rub off on me.

Sweet Rewards

Things have been wonderful lately. After many months, Elise has finally made another leap forward in development. I've been trying so hard to be satisfied with the slow and steady progress she's been making since it IS progress. However, I couldn't help being disappointed that things weren't coming together faster. Well, no more disappointment. Elise has made really significant progress since she started school last week. I'm practically bursting with joy. Go Elise! All your hard work is paying off.

Here's a list of her new skills:

• Elise now uses the potty unprompted often. She still has accidents, particularly in the evening when she's tired, but she's learning to take care of herself and go on her own periodically.
• Elise now has an interest in helping with household tasks. She has been helping in the kitchen sometimes and feeding the dog. Of course, this means more work for us because she fills the dog's bowl with obscene amounts of food and protests when you tell her to give less. She also seems to think that the water bowl should be filled with dog food. Big messes with this.
• Elise is regularly seeking toys to play with and playing with toys. She's pulling back from obsessively doing puzzles and expanding her play. We've noticed her using more pretend play now. Her play is definitely maturing. She's also quite accepting of adult's joining her play. Not so accepting of sharing with her brothers and other peers yet, but that will come.
• Elise has been showing enjoyment about engaging in play with her brothers. The boys have to initiate the play, but Elise loves it. She is all smiles and giggles for sometimes as long as 15-20 minutes, all of this without adult assistance.
• Elise got out of bed on her own yesterday morning. I've always found it disturbing that Elise wakes and just stays alone in her room until we come and get her. I've dreamed of the day that she'll run to find us. Well, that day may not be a "dream" for too much longer. Ok, she got out of bed and went to play in our room yesterday, but we weren't there. At least she left her own room. However, last night she stayed up after we put her to bed and played with all sorts of toys in her room. Then, we were shocked when A came out to tell us that Elise was in his room. Apparently her room had become boring or something. When we told her she needed to be in bed, she protested and ran to our bedroom. She tried to turn on the computer. We took her back to bed despite her protests. About 15 minutes later, she came out to find us in the living room. She asked (non-verbally) for her pull-up to be changed as she had wet in it. After I did that, I told her she needed to go to bed. She went to the pantry, took out some canned fruit and told me "I want". Of course, I rewarded her by giving her a bowl of fruit. When she finished, I again told her it was bedtime. She then walked to the kitchen cabinet where we keep her cups and pointed. When I asked if she wanted a drink of juice, she said "Juice". Once I gave her the drink, she happily walked to her bed with me. I was overjoyed to have her engaging in such normal 3 year old behavior of working hard to stay up late. In another week or so, it may be irritating, but right now I'm just really proud of her.
• Elise's verbal and communication abilities are markedly improved. She is remembering to use sounds to express her desires and is attempting new vocabulary. She is working very hard to speak and obviously has a strong desire to communicate.
• Elise is engaging in parallel play in her classroom and is following the other children well. She has been assigned a boy from her class to help her follow in line and other things. It's been done to teach him responsibility and boost his confidence, but it has the side benefit of teaching Elise to interact with a peer and to follow a peer's lead. She seems to be doing great with this.

As you can tell, I am really excited by the progress Elise has made so recently. I don't know if it was coincidence that this has coincided with the start of school, but I suspect it's not. I think that Elise is thrilled to have more going on her life than just home based DTT and she feels great about being part of a "normal" activity of going to school.

Last weekend, we had a playdate with B's best friend and his little sister, who is 2 years, 3 months old. Elise did well and did not get overwhelmed. She was able to play in the same area with the other children with no problems. She actually displayed jealousy of the little girl. Hubby was playing with her. Elise watched this for a bit, then very determinably sat in hubby's lap. Later, the little girl picked up a stuffed animal that Elise virtually ignores all the time. Elise followed her around trying to gently take the stuffed animal from her. Again, not a great trait, but so perfectly "normal". I love it!

Tomorrow we have a meeting at Elise's school with her teacher, our at-home ABA/DTT parent trainer, her one-to-one classroom aide and that aide's program supervisor. It's necessary to ensure that everyone is working together and not confusing Elise with varying techniques and goals. It should be interesting. I attended her back to school night yesterday. We get the read from her teacher that she doesn't feel Elise belongs in her class. I tried to keep an open mind during the back to school night presentation to see her perspective. It was interesting because she discussed what her goals are to teach the children by the end of the school year. Well, Elise will not achieve those goals. I'm not selling her short, she just won't be there in that time frame. From that perspective, I can see why the teacher would question Elise's enrollment. However, we see it from the perspective of what she is gaining by being around typical peers and learning the structure of a school setting. The academic learning for Elise will still come more from her home based program due to her learning difficulties. At least that is how it'll work in the near future. I just hope that they all commit to doing their best for her and that we don't have to fight too hard to keep her in this classroom. I think our best argument, provided she is not a detriment to the other children in her classroom, is that she wouldn't do better or learn more in a more restrictive environment. She would face the same learning challenges and actually lose the opportunity to model typical peers. In addition, the more restrictive classrooms are actually more chaotic and less structured, an environment that is LESS conducive to Elise's learning. Time will tell, but we probably have many school battles remaining in our future. At least until Elise is much more healed.

Well, that is all that I can think to write for now. Things have just been wonderful lately. I'm looking for a bit of a backslide over the next few days because I can see that Elise has probably caught B's cold and is getting constipated again. This always backtracks her behavior. However, she rebounds when she is well and I believe she will rebound back to where she has been this past week.

Oh yes, I forgot to tell the funny and gross development progress for Elise. I should first add the caveat that, as the mother to 3 young children, I have a warped sense of bodily functions not being all that gross and also being worthy of conversation. Hopefully, I'll return to being the kind of person who doesn't discuss poop as part of regular conversation again someday, but I'm not there yet. Elise is scared to poop in the toilet. However, she knows that she is not supposed to poop in her pants and that poop goes in the potty. Her solution has been to poop in her pants and then clean it up all by herself. This cleaning consists of her taking off her pants in the bathroom, picking up the poop that drops out of her pants and onto the floor and then putting it into the potty to flush. Then, she'll run to her bedroom, pick out a new pair of underwear and put it on. Of course, the near pair of underwear is put on without having wiped her bottom and her hands are covered in poop from picking it up. Yes, it's a very charming habit. I'm mystified as to how to solve this problem. It's not only gross, it's really a health hazard. Plus, I'm getting really sick of cleaning up her and the bathroom each day. At least she's trying to do the right thing???

The second funny gross thing is that for some reason she has her evening pee accidents on our bed, but always on hubby's side of the bed and involving his pillows. Works for me, but he's wondering why it's always his side of the bed that she prefers. I have to watch out so that he doesn't start sneaking a pillow exchange with me!

We Were Right (well, probably)!

Elise started school on Monday. She likes it! Her aide seems good. She has 12 years experience doing this sort of thing. Handling Elise is no mystery to her. Elise is attempting to follow along with the class, but her communication skills, or lack thereof, get in the way. She's actively engaging in parallel play. Most of all, she seems to enjoy going to school. I've seen a change in her attitude at home. She's now playing with her brothers in the evening (when they initiate and sustain it) and going to the potty on her own. She's also smiling more and obviously proud of herself. She knows she's different, but she's loving being a part of something so normal. We knew this. I've come to doubt that this would be the right solution for her so many times because we've really received so little support from everyone about our desire to place her in a typical classroom. It now seems that our instincts were right. This is the best thing for her. It may be a fight to keep her there, but I think the way it makes her feel is worth any battle.