April already...

Time is going by so quickly. It's shocking to me that we've only been dealing with Elise's diagnosis for a little more than 7 months. It seems like a lifetime, even though time is flying. It's hard to remember life before autism invaded every aspect of everything.

Elise has had a rough week. It started going downhill last Sunday. She ate a lot of Easter candy, especially jelly beans. She became really irritable and, well, just addicted to the candy. She would point at the counter asking for the candy. When I'd tell her no more, she would drop to the floor and throw a tantrum. I guess this isn't all that unusual for a child her age, except that this continued for literally hours, endless hours. She would do nothing else but obsess about the candy. It was seriously disturbing. I have since confiscated all the kids candy and hidden it. I've told the boys that if they ask for it in front of Elise, the answer is no. I let them have some of it when she's not around. I've suspected for a long time that her behavior worsens when she has sugary things. After Easter, hubby has now bought into my theory on sugar also. She also spent some time when she was on her sugar high laughing inappropriately. We've been there before and sugar was big on those days also. A common link is finally discovered. Maybe diet will make a difference for her. We'll just have to try and see.

Since Sunday, Elise has been battling a cold. Therefore, she's returned to being very clingy with me and throwing big fits when I'm out of her sight. It's quite stifling and controlling. Augh! We've also discovered that she's becoming lazy about working. She tries hard to get away with doing the minimum required of her. Smart, but not helpful in continuing to push her development.

Elise is doing well in speech. She has a speech book where we've added pictures. She loves to look through it and practice the words. She seems to be trying really hard, but she's incredibly difficult to understand. For some reason, she has a super difficult time completing a word. For example, Ball is Ba, Cheese is Chi, Adam is Am, Me is Mm, Juice is Ju, you get the idea. She has a really hard time putting together two syllables. For example, Bubble is B unless you remind her to make two sounds. Then, she'll say B-B, but it's very disjointed. Same with Choo-choo (train is too hard for her to say). She'll say it, but the two syllables don't flow easily. I'm so proud of how hard she's trying but at the same time I'm so disappointed to see how difficult this is for her. It tears me apart to deal with the two strong emotions simultaneously without letting on to Elise that I feel any sort of disappointment. The disappointment is not in her, it's in the reality of seeing so plainly how impaired she truly is. Seeing her struggle in speech like that slams home the reality of how truly severe her situation can be.

Today was a really rough day for Elise. Her poor nanny. I think she was really upset by all the difficulties Elise had today. Her reaction to Elise's rough days is not much different than mine. It brings us both to tears. I know that she loves Elise because why else would she stay in such a difficult situation. When she told me about her upcoming surgery, her chief concern seemed to be how we would find someone who would be patient and supportive enough for Elise. She is an extraordinary person.

So today was rough primarily because Elise has such a hard time with changes in routine. I went into work late because I was taking Elise to visit a potential new preschool for her and Brendan. That broke her precious morning routine. On top of that, she shows up with her nanny, me & later her dad to sit in this strange school where everyone is talking about her. Then, she gets to go to a classroom where she meets lots of other grown ups and sees other kids and lots of fun toys. She sat down to have a snack with the other children and attempted to join in circle time (kind of, sort of). She was pretty much in her own world while we were there which drove the point home to me that she can only attend school with a 1:1 teacher student ratio. That includes the special education classroom settings. She threw a semi-tantrum about leaving a toy she was holding when we left and then threw a tantrum when we wouldn't let her play in the playground there. At least she showed her true self so the school knows how she really is.

We liked the school. The teachers seemed willing to work with her and include her in their classroom. We explained that she'll only attend if we have her behaviorist aide with her at all times. They appeared fine with that situation. The director seems willing to work with the situation also, although I don't think they're very experienced in handling a child like Elise. That makes sense though since that's not their job and we don't expect it to be. As long as it's a safe, nurturing environment that works to include her, we'll be very happy. I think Brendan would really like it there, but then Brendan likes it everywhere.

We're actually attempting to buy a house soon. We've finally gotten together all of our paperwork for the mortgage guy. We have a definite weakness in that we don't have enough savings right now, so probably we won't be able to buy for a few months. We were hoping to be under contract by 4/30 so that we wouldn't have to pay the exhorbitant taxes we owe on the 15th, but that's most likely not going to happen. We'll miss the federal first time homebuyers credit, but we should be able to get the state's credit and that'll help us a lot in the future. Either way, it's been a stressful week. Now, we have to figure out how we'll manage to pay our taxes next week with no money. I refuse to pay penalty and interest, so we'll scrounge around to make it happen somehow. I have to remind myself to stop throwing a pity party for myself and just be happy that we probably will be able to make this happen if we scrounge hard enough. It would be worse if we truly had no options. However, we're getting dangerously closer to that prospect. It cracks me up that we can't afford a home, but we can't afford not to have a home. I guess we're just the people who don't fit the mold and slip through the cracks of the tax code. Anyway, with taking care of all this home buying thing this week, we have managed to be extra stressed and less attentive to the kids. Not good for them, but a person can only do so much. This too shall pass. I seem to say that far too often.

Elise began taking GABA last Sunday night. It seems to be doing wonders for her insomnia. She's regularly sleeping the night now as far as we know. On the flip side, she's much more spacey and stimy during the day. My theory for this is that she used to take 2-3 hours each night to unwind and have her alone, down-time. Now that she's sleeping, she never has this opportunity, so she spaces more during the day. Still, it's more important to have her sleeping well. Hopefully as she adapts, she'll learn how to need less time to unwind and have alone, down-time.

Tomorrow I'm going to pick up B12 vitamin for her. We're hoping this will help with her expressive language skills. At this point, our number 1 concern is to help her develop expressive language. There's a lot more to tackle, but this is at the top of my list. Let's hope we're one of the lucky ones who see good results with B12. Some children apparently get very hyper and stimy on it and therefore can't use it.

After we spend a week on the B12, we'll start eliminating casein from her diet. Then, it'll be gluten. She'll spend at least 3 months on a gluten-free, casein-free diet. We'll then evaluate whether the diet helps her or not. If it does, it'll become a way of life. If it doesn't, well, we'll know that we tried it and we'll never have doubts that we missed something obvious like diet as a way to recover her.

Enough of this, I suppose that I should get some sleep now. Tomorrow I contact our new realtor & the advocate we plan to use. Elise has her IEP rescheduled for the Thursday after next. We need to have a game plan in place by that time so that we ensure we're on the right path to getting Elise the option we want of private preschool with a 1:1 aide.

Good night.