Good Day

We had a good week with Elise overall. She has settled nicely with her nanny's return and seems to be working really hard in her DTT (discrete trial training) sessions. On Weds, I took her to see her psychiatrist. Elise was actually quite "off" during the visit. She was fussy and fairly non-compliant. However, although she tantrumed, they were more whiny than full tantrums and she was easily comforted by me out of them. I noted that she wasn't feeling all that well, so her doctor suggested that we start using JuicePlus to boost her immune system. She also provided the name of someone doing a research study on boosting the immune system of kid's like Elise. I will be contacting this person to see if it is open for us to join. We decided to up her Abilify to .35 ml. We have seen really significant progress with the .25 ml which is a very miniscule dose. The dose she was using initially when she was falling asleep all the time was .5 ml. We're hoping that the .35 ml will really benefit her and not lead to increased side effects. We began the new dose tonight, so we'll see how it goes. Initially, the Abilify seemed to help her sleep through the night, to focus better and to improve her eye contact. We've seen a decline in these positive effects. They're still way better than they were, but not as great as after we first started using Abilify. Perhaps her body does need a bit more. We'll see. So far, I'm very pro-Abilify. It is making a huge difference for Elise and my hopes are really high for her.

On Thursday, I met with our parent trainer. She also had really positive things to say about Elise this time. She noted that Elise is verbalizing much more for them. She is recognizing and saying colors, her tantrums have declined and she is progressing well through most of her drills. They have decided to modify a couple of drills. One of these is to modify the non-verbal imitation drill where Elise is supposed to imitate two consecutive actions. Elise is not mastering this and becomes quite frustrated with it. I asked whether this was a motor planning issue. The trainer said that no, it was more of an executive planning problem. In my words, Elise's brain is just wired wrong - it's so sad. However, she's a really clever and determined girl, so I'm hopeful that we can re-wire some things since she's still so young. If not, I'm hopeful that Elise will teach herself work arounds for her "shortcomings". When I think of it this way, it bothers me less. I mean, we all have areas where we have to teach ourselves work-arounds because it's not where our talents lie. Elise's seem to be much more numerous than most, but I'm confident that she will be able to teach herself a lot, especially with all the support she is receiving while she is so young. The second modification is in teaching Elise how to play some of the preschool games, like tag. They've noticed that Elise just gets very stimulated when she runs and loses the object/purpose of running. Therefore, tag is pointless for her. She begins to chase someone and then gets excited and just aimlessly runs. They are going to have our nanny stand still and teach Elise how to "tag" her, rewarding her each time. Then, she will move some and Elise will "tag" her, and so on and so on.

Today Elise had a session with a fill-in consultant that she's never met. The woman was really excellent. We had her work with Elise for an hour in her room. Then, we went to a nearby indoor playground with her brothers. The consultant was awesome about gathering kids to play with Elise. We played duck-duck-goose, tag, ring around the rosies, follow-the-leader and other things. It was hard for Elise to wait her turn and follow along, but she was so HAPPY. It was such a joy to us to see how happy she was to be able to play with the other children. I've never seen her try so hard and enjoy herself so much in this situation. It's a beginning and hopefully a start to being able to develop some relationships with peers. During duck-duck-goose, she would get really smily and excited anticipating the "goose". I loved seeing her like this!

We finally received our letter from the school district about starting speech services. We have yet to receive anything about the OT services. I spoke with her current speech therapist and contacted the vendor she noted (she didn't "recommend" as I think she can't do that, but she did note one in particular). I am meeting with that provider at 9am on Tuesday. It's really far from where we live, like a 45 minute drive. I find it suspicious that there is no one closer. I also find it suspicious that we received the letter on 7/29 and the vendors close during the month of August. I think the school is working to ensure that we don't have the opportunity to use all of the hours we agreed to in mediation. I do sympathize with the situation that these school districts are facing. Federal mandates require much in regards to special needs children yet provide a very low actual percentage of the funding for these requirements. The state is broke and the county is also in bad shape. The number of autistic children is growing rapidly. The system is very stretched. While I understand this, I refuse to let Elise fall through the cracks. I battle the selfishness of how hard I'm working to ensure that Elise gets everything knowing that many other children like her are not receiving the same. However, if Elise gets less, it's not like those children will get more. There would just be that much less given. At least this is how I rationalize. This autism crisis is just bad. I have no answers. I just hope that there are others who are coming closer to having answers.