It's been a long time.

It's been a long time since I last posted. We spent a few weeks where I didn't have computer access in the evenings. Then, it had just been so long that writing a catch-up seemed an insurmountable task. I guess I'll just keep this to bullet points.

• Elise has overall continued steady improvement. Again, no major gains, but still moving upward. I'll take it.
• Elise had a follow-up research study assessment in June. She did great. I was really excited for the report and hoped to see vast improvement in her scoring. Well, I was bitterly disappointed to see that she still scores REALLY low. It's just frustrating to see that her language skills still score like a 15 month old. Really??? I know for an absolute fact that she understands much more than a typical 15 month old child. I hope that some day these awful assessments will reflect the truth. It seems that the assessments are really made for a typical child and one who processes information differently has a difficult time scoring well. That's my theory and I'm sticking to it.
• Elise has begun doing jigsaw puzzles and she is amazing at it. I mean, she pretty much does only the 25 piece ones. She has done a few 60 piece ones, but she needs help initially for those. We have this Dora puzzle that has a 3D image on it. Since the image changes depending on how you look at it, it takes me around 8 minutes to complete it, 5 minutes if I'm lucky. A couple of days ago, Elise started playing with it and I sat down with her to watch. No kidding, she had it completed in no more than 3 minutes. She has quite impressive visual perception skills in my opinion.
• Elise has been improving in the area of speech, but this is very slow. She now listens for the Give x AND y command and responds appropriately. She used to get very confused by a request for more than 1 item. She finished the flute easily and moved on to the harmonica. She finished the harmonica quickly and is now using a slide whistle. The force with which she attempts to speak is improving since she started using the instruments. It's wonderful to see her in speech therapy and see how hard she is trying. When she can't get a word out understandably (this would be most of the time), her therapist will instruct her to watch her. Elise will stop and study her therapist's mouth saying the word so intently. Often, she will then reproduce the word much better than before watching her therapist. Elise has a strong desire to speak and this is how I know without a doubt that she WILL speak one day.
• The school district has not complied with providing us information for beginning speech and occupational therapy. It's really frustrating, but seems to be par for the course. We have very low expectations of them at this point. However, we document all contact and all of these delays. At this point, it seems to me that they are not in compliance with the mediation agreement, but I unfortunately didn't see anything in writing in the agreement about how long it would take to get the letter with the agencies we could use for speech and occupational therapy. It's not explicit, but given the expirations of use and writing that this is to provide support during the summer months, it seems that the implication can easily be interpreted to be that we would not have waited until mid-summer before even receiving the D*#n letter.
• Elise has regressed slightly in one area. She has become much more fearful when we are out in public. She went through a long period recently of basically hiding in corners and jumping when we're out in public. She seems to be pulling through this a bit, but she still does not eagerly play like she used to do. Poor girl. It seems like her life would be so lonely. I don't believe that she wants to be so alone. I think that she would love to be included with the other children. She just has no tools to do so at this time.
• Elise did well with her grandparents. She threw some doozy of tantrums for her abuelos a handful of times and that was difficult. For the most part, she became attached to them and was happy. She was more thrown by my mom visiting because I think she was confused about why her abuelos and her babysitter had all left and because my mother was only in for 5 days with her. She didn't throw major tantrums for my mom, but she was kind of lost about what to do. She was also more lost than typical when her abuelos were visiting. She started looking through her cards from her ABA therapy all the time. Needless to say, she was beyond thrilled by her nanny's return. She does care for her grandparents, but she was super excited to have her routine back.

That's about it for now. Things have been relatively slow for the first time since last August. They are picking up again this week. She has a doctor appointment on Wednesday with her psychiatrist. Then, I have to firm up her schedule for the fall so that her ABA hours can be scheduled. This will be a challenging, time-consuming task since I don't even know her school hours and days yet or even who will be providing her speech and OT. Busy times are coming.

Before I forget to mention, the Abilify seems to be a wonder drug for Elise. She is much more even tempered and much more focused for learning. Her eye contact has improved dramatically. This may also be due to the fact that her ABA has been working on eye contact with her. I'll never know for sure why it's improving, but I'm staying the course with Abilify and with the therapy.

Until the next post which I promise will be sometime this week.