Same Sh** Different Day

Contrary to this title, I'm actually not as frustrated as it sounds. It's just the truth. I don't post as often because everyday is just more of the same. We're seeing steady progress, but no huge breakthrough. I'm happy that there is steady progress, but it sure would be great to fulfill the fantasy I have of waking up one day to having Elise no longer be autistic. The happiest dream I can even imagine is to have her come running into my room some morning, calling out my name and give me a big hug - all without prompting. I'm crying now thinking about that dream.

Elise had a fantastic week the week before this past week. We went casein free two weeks ago. Initially, it seemed that she may be benefitting from it. She was very alert, interactive & making significant speech progress. Her poops were also normalizing. We visited friends in San Diego on the weekend. We stayed in a hotel and did all kinds of things completely out of Elise's routine. She adapted beautifully. I have to admit that I was surprised at how well she did. Starting on Monday last week, things took a sharp turn in the wrong direction. Elise began stimming a lot. She started to seem very sensory sensitive again. A lot of the sensory issues she used to have seemed to return full force. She is back to squinting her eyes & pushing on them. She is bumping into all kinds of things. She's scared of sudden noises, like cars starting, again.

Worst of all, she started waking again at night. She woke on Monday night and was in the middle of a tantrum rage. I took her out of her room so that everyone else could continue to sleep. She began slapping my face, hard. She was completely out of control. I ignored her and she settled within a couple of hours. On Wednesday night, she awoke around midnight, again in a rage. We again took her to the playroom. She was completely out of control. I didn't provide her the opportunity to hit me again, but she was slapping her hands together very hard, threw over her play kitchen, almost overturned a very heavy train table and was thrashing & kicking wildly. Hubby came out to help me. We wrapped her in a big blanket super tight to restrict her movement so that she wouldn't hurt herself or anyone else. That enraged her further. B woke up and called for Daddy, so hubby went to be with him. I didn't want the boys to see Elise like that, so I put her in the car at 1:30 in the morning and went for a drive. We were gone for about 30 minutes. She was quiet as soon as we backed out of the driveway. When we returned, she began screaming as soon as we turned onto our home street. However, she was not in such a rage this time. We watched tv for a bit. Eventually, Elise got up and went to her favorite corner. She was whining a lot, but I ignored her and fell asleep on the couch. When I woke up, I realized that she was still standing in her corner, but was quiet. I called to her and asked her to come give me a hug. She came over to me, but when I tried to hug her, she began to cry again. She said "Up!", so I sat up. I tried to hug her again and she pulled away from me whining. I asked if she wanted to go to bed. She said "Bed" and held my hand as I took her to her room. She laid down in bed and fell asleep. It was 4am by this point. When she was so out of control, I became so scared. She's already strong. If we don't get this under control, we will not be able to handle her someday. Hubby realized this too. When we were wrapping her in the blanket, he looked at me and said "What are supposed to do?" It was exactly the way I was feeling and met more than what are we supposed to do in this particular moment. It was a horrible night.

She has slept well the last few nights. Let's hope that the worst is again over and this time will stay over forever. One thing to note is that on both Monday & Wednesday nights, she developed a stuffy nose during the night. When she sniffled, is when she would become further enraged.

We are very nearly gluten free now also. This week, I made GFCF chocolate chip cookies, bread & blueberry muffins. All turned out well. The bread was tasty, but was oddly shaped and HUGE. I definitely need to work on baking the bread. I may need to buy a breadmaker to get it right. However, it was a first try. I've only baked quick breads in the past, never a yeast bread. No longer eating out is difficult as is the lack of eating pizza. We didn't have pizza that often, but knowing that we can't have it is strangely difficult.

The babysitter is going on a leave for 3-6 weeks soon. Elise's therapist is working on putting together a social story with pictures to help explain to Elise that the sitter will be leaving for awhile but will return. I think that'll help Elise understand a lot. The grandparents are coming to help us care for the kids for 4 weeks. Otherwise, we wouldn't be able to keep working. It's not like a can just send Elise to a daycare setting or hire just anyone to watch her. She needs someone who cares about her, is patient & will work with her instead of just enjoying the fact that she will do her own thing and not ask for a lot of, or any, care.

I've called Elise's old chiropractor. I'm hoping to schedule a time to have her adjusted again. He used to be extremely helpful with her sensory problems in the past. I'm also going to get the name of a good homeopath from him. I trust him very much. He is extremely passionate about his work, but reasonable about where traditional western medicine is needed. He'll be good in helping us reach the balance between all the helpful options for Elise.

Elise's speech teacher began using a flute to work with Elise. Elise blows on the flute a prescribed number of times and then we ask her to speak. The words are often much clearer and stronger. It can sometimes be pretty amazing. Other times, I don't notice much difference. When it works, it's pretty remarkable to hear her speak so well. That little girl works so hard. Tonight, I was on the phone with my parents. She pointed at the phone. Hubby asked if she wanted to talk. She said "Talk" as she nodded her head. I gave her the phone and prompted her to say things. She said, Hi, mama, dada, Adam, apple & bye-bye. Her grandparents were very supportive of her and she looked really proud of herself.

One thing that has really been bothering me since Thursday is that her parent trainer is now going to begin to work with her on more oral motor skills. They will be working on teaching her to smile. I can't even explain how much it bothers me to hear that something as basic and essential as smiling needs to be taught to Elise. I hadn't noticed it before, but Elise no longer gives big smiles. Now, I'm crying again thinking of this. I'm starting to feel desperate about her again.