Decisions, decisions

This week hubby saw the other preschool that the school district listed for a selection for Elise. It was again ok, but apparently the same as the other recommendation in that it's not strict DTT / ABA and isn't one to one instruction. Elise needs both of these things right now. We sat down during the week and discussed what our goals were for Elise regarding school. We both agreed that we do not feel these are the right schools for her. However, we were having problems even identifying the goals of having her in preschool at all right now. Fortunately, we had a meeting today with someone from the ABA agency we are using who has a fair amount of expertise and experience with the various school options and goals. She explained that the goal of preschool for Elise at this stage is to teach her the structure of a school day. DTT may very well do several tasks in a 15-20 minute period. At a preschool, the day is pretty much broken up into 15-20 sessions of one task. This is very different for Elise, but very necessary for her to learn to help her succeed when it's time for kindergarten.

In discussing with her, we returned to what we originally had always wanted for Elise, but had kind of given up on obtaining. We want Elise to attend a private preschool with B & typically developing peers. We do not want her in a special education program. We want her to have a one to one aide from her ABA agency with her at school. We only want her to attend school for no more than 10 hours per week. We want speech services of 2 hours per week & occupational therapy sessions of 1 hour per week. This is a lot to ask, but it's the services that will benefit Elise the most. This is not something we will obtain on our own. We will be contacting an advocate this week. She was recommended by Elise's ABA agency. She has successfully helped many of their clients and her success rate is great. This advocate receives payment from the school district after mediation, not from us, so that's much more feasible for us than a lawyer with a retainer fee would be. It feels wonderful to have a plan of what we want finally in place, but scary to think of the fight we will have to obtain these services. I'm rather conflict adverse, but this is my child so I will be stepping out of my comfort zone.

One reason we have decided to push for this now is because our ultimate goal is to have Elise mainstreamed with her typically developing peers. We believe that Elise is very intelligent (don't most parents think this of their children?), although she doesn't easily show this to others. If she remains only in special education, my concern would be that she wouldn't be properly challenged. In addition, her quirks may not be as readily remedied. Elise has behavioral issues right now, but overall she tends to go with the flow when she's out on her own. Among other children with various behavioral problems, she may be overlooked. One example of a behavior that would likely be overlooked in a special education classroom would be her verbal stimming. She periodically will loudly say something like "Ah!". In a classroom where there are lots of behavioral type concerns, this may not quickly be addressed because it causes minimal disruption. The same behavior in a classroom of typically developing children will likely immediately be addressed as all the other children would likely turn and look at her and the teacher would then address the behavior. This will help Elise learn appropriate behaviors for life. Since our goal is to mainstream, it's better if we start that now. Once she's tracked one way, it may be difficult to change her direction. I also really want her to go to school with B and, eventually, A. They both miss her and want her with them and, in her own way, she misses being with them.

We discussed various private preschools that accept IEP students and work with one to one aides provided by the school district. Most were located too far from where we live. One thing I noted was that many seemed to be Presbyterian preschools. I looked up for a Presbyterian preschool closer to our home and found one. Coincidentally, it's one I've always been really curious about pursuing when I drive by it. I just shyed away because it wasn't super close to home and it was tied to a church of a different religion from ours. I plan on calling this school this week and feeling out whether they would be open to such an arrangement. If so, we'll tour it and get B and Elise on a waiting list there for the fall. If it seems that it would be a good school for us, we may see if someone from the ABA agency could speak with the school to help us ensure it would be a good fit for Elise.

On Wednesday, we returned to the university program for a 3 month follow-up on a research study in which Elise & I were participating. She went through some assessments and then we played together and were filmed for 10 minutes. I think she did great, although she refused to show her new language skills to them. That's so Elise! Just before the research assessments, we stopped by and said hello to the social worker with the program. She helped me a lot while we were there and it was great to see her again. Elise then participated in another quick research study that tracked her eyes for these two 1 minute video segments. After that, we went to lunch. From lunch, we stopped by Elise's old classroom. She recognized it immediately and made a beeline straight for the toys. She remembered precisely which toys she preferred. We said hi to each of her old teachers. The other children in the class seemed to be handling us being there ok, so we were allowed to stay and participate in a sensory activity (playing with beans). We also did circle time with the other children. I think Elise had a great time with that. She refused to say hi or bye to anyone, other than to wave. She says those so easily now, it's like she made up her mind that she doesn't speak when she's there and that's how it's going to be. Unfortunately, her main classroom teacher was not there that afternoon, so we didn't get to see her. It was nice to see how far Elise had come. She no longer belonged in that classroom, although she still needs lots of help.

Immediately after leaving the classroom, we went to an appointment with her psychiatrist. I was thrilled to see that Elise showed her how well she can understand now. She pointed out background items in a picture book when requested and identified all requested colors. The doctor was very impressed with the progress Elise has made in her receptive language skills. She asked what our primary concerns now were and we told her first and foremost, developing her expressive language skills. After that, resolving her sleep problems. She suggested we try GABA for her sleep & Vitamin B12 to help with her expressive language. We also decided to attempt the GFCF diet with her for 3 months to see if it benefits her. We're first going to add GABA for a week. Then, we'll add the Vitamin B12. After we note the effects of that, we'll eliminate casein from her diet. Then, we'll remove the gluten. We'll give it 3 months and then assess whether it's helped her. It'll be really difficult, but I don't want to wonder whether we missed a key solution for her when all it involves is following what is a healthy diet.

Elise also began speech services this week. She speaks! I couldn't believe how much she'll speak for the speech therapist (SLP). I loved it! The SLP prepared a speech book for us to practice with Elise each day. We then bring it to Elise's sessions to work on those words. I think we hit a great time to begin speech with Elise because she's finally ready to work on it. I expect the words to become easier for her in the coming months. This is a super challenging area for Elise, but obviously essential for her continued development.

This weekend, Elise's ABA behaviorist accompanied us to the park for Elise's session. We were having a playdate with a child from Adam's class. She is 5 and very outgoing. The behaviorist managed to involve Elise in much of the play. I was really impressed. It was hard for Elise, but great to see. I'm once again filled with hope.

We have a path to follow again. It always feels great to have a plan in place. Let's hope that the plan we have in place pans out and that we see tremendous progress from Elise.