Educational Solution?

We had Elise's reconvened IEP with the school district last Thursday. We are returning the signed paperwork tomorrow morning. We are signing in disagreement to the instructional setting & the services. Our reason for disagreeing with the instructional setting is that we want her in the least restrictive environment. Our reason for disagreeing with the services is that Elise needs 1:1 BII/BID services with a non-public agency (her ABA provider) in order to support this placement. We are consenting to the implementation of speech and occupational therapy services. The best news we have is that the lawyer contact we had has agreed to take Elise's case. She works on a contingency basis, so she only takes cases that she feels she can win. I take that as a good sign. She feels we have a very strong case and we seriously hope that she is right. We really want Elise to benefit from being around typically developing peers. I strongly feel that the options presented for her education to this point are really just warehousing her and are not the best thing for her future.

This week has been ok with Elise. The weeks are just really difficult because the only time I spend with her is in the evenings when she's tired. When Elise is tired, her autism symptoms are exacerbated. It's just hard. I wish that I was able to spend more time with her when she's on so that I can feel that hope more often. It's just such an endless tunnel right now and we don't know when we'll see the light at the end, or if they'll ever be an end.

I read Elise's IEP report and I think that's what has turned my positive outlook a bit more negative lately. It's so tough to read assessments of where she is developmentally and see right there in front of me statements like "Deficits in cognitive ability will impact her ability to access the general preschool curriculum" and this doozy of a paragraph: "Elise's social development is estimated in the well below average range. Elise's academic skills are estimated within the well below average range. Overall adaptive skills appear within the well below average range." I really fail to see her "deficits" as so poor. She has so many strengths that are just overlooked. Yes, she's very autistic, but I really don't believe she has cognitive deficits. Her autism and lack of compliance often keep her from being able to demonstrate her vast abilities. This has improved dramatically with therapy. No one who has worked with her for an extended period of time seems to think that she is suffering from any mental retardation. On the other hand, no one will commit to saying that she isn't mentally retarded because she's so young, but we regularly hear that she shows lots of good signs. I know I'm her mother, but I think that she's actually really smart. Given how isolated she has been in her own world and the vast amount of time she spent with little to no receptive language skills, I am astounded by how many skills she has essentially self-taught. That takes a lot of intelligence. She is coming along, we just need to keep unlocking the chambers in her mind to open her up to the rest of the world and let us all in to take a look.

One huge positive is that she prefers to be with people rather than alone. She is actually quite social, she just needs to be taught how to interact because that learning is not innate for her. God, I love her so much. It kills me to read these kind of things about my baby.

On Sunday, Elise became really upset when hubby was leaving to take the dog out while the rest of the family was putting on shoes and getting ready to go to the car for a trip to the store. Those moments are always chaotic and stressful for all of us and she didn't understand what was happening. She left the house with me (she was screaming) and got into her car seat. As I was buckling her in to her seat, she began to calm. I looked at her and told her that I think it must be really hard for her not to understand what's happening. I asked her if it would help her if I always first showed her pictures of what we are planning to do next. To my surprise, she looked me in the eyes, nodded her head and attempted to say yes. I acted nonchalant about her response and just told her that I would start to do that. However, I was really stunned because I think she knew exactly what we were discussing. I'm also pretty sure that no one believes me when I tell this story, but I was there and I know there was a very clear moment of connection between us. These odd moments are what keep me fighting and striving for any possible way to help her.

I went out this week and bought lots of staples for our new gluten-free, casein-free (GFCF) pantry. Surprisingly, it has only so far amounted to $100 to stock up on all the various flours, starches, baking powder, bread mixes, etc... Now the real test begins this weekend when I actually attempt to test bake some recipes. We have GFCF Chicken Nuggets on the menu for Friday night and GFCF chocolate cake with GFCF chocolate frosting for Friday afternoon to celebrate the nanny's birthday. It should be interesting. Thank goodness I actually enjoy baking. A part of me is excited to get to make everything from scratch. It'll be an adventure. We have found good substitutes to a lot of the foods with gluten and casein that she currently eats, but we still have to find more. For instance, pizza & macaroni and cheese will be a challenge. She'll manage, it's her brothers that will have the more difficult time. However, I can't serve it to them because if it's in the house, Elise will definitely want it. We're also very dependent on bread for things like sandwiches. Hopefully some of the bread mixes I have and the recipe for GFCF bread made from scratch will be tasty. I've not been at all impressed with the store bought GFCF breads, but I've heard tales that the homemade are much better. Let's hope that's true.

We'll just continue plodding through the next few weeks and hope for the best. The bottom line is that Elise is steadily improving and, even though there's been no huge breakthrough like I dream about, the progress is continuous. Who cares if she gets there in one huge burst or slow and steady like a turtle? As long as she gets there.