Sometimes All One Can Do Is Laugh

The school district has managed to exceed my exceedingly low expectations by coming in even lower. Yesterday late morning, we learned that Elise will begin school on Monday in the 10:40-1:00 class. We have worked for the last two months to set her schedule with all 4 of her outside therapies around the fact that she will be in school from 8:00 to 10:20. Sometimes there is nothing to do but laugh.

While hubby then spent time in the afternoon meeting with Elise's new teacher and the vice principal and searching for the correct documentation to enroll Elise, I spent the afternoon trying to determine which schedules are now conflicting and resolving the conflict. Fortunately, it "only" effected 2 of the 4 therapies. The DTT/ABA agency was quick to respond and completely revamp Elise's schedule. Yea for them! The speech therapist is not so able to work things out for us. It's not for a lack of trying, it's just that she's also a mom with young children and her schedule was already set with all of her clients for the fall. The times she's offered aren't great because it requires B going along to speech with the babysitter. I'll have to figure out a different arrangement there.

Work has continued to be very stressful. I now have no great options but to pick up A from school each afternoon and return him home. This takes 1 hour door to door, basically a lunch hour. However, it's a very late lunch and, based on last week, work is not really all that accomodating to the schedule. It's doubtful that somewhere new would be accomodating either as I'd be a new employee. I understand that this isn't ideal, but I just don't know what else to do. I could pay for the after-school care program for A, but I hate the idea of having him in school from 8-5 each day when he's only 5, especially when I'm already paying for childcare at home. At some point, working becomes cost prohibitive, especially now that I'm looking at needing to send B to his school for longer days on Elise's afternoon therapy days. Top that off with the fact that we're being hammered by taxes and I'm not sure that I'm really making any money working. The bonuses to working are that I get something for myself that isn't entirely focused around the children and that it keeps our wonderful nanny employed. Frankly, with the challenges we face and having no family and few friends in the area to help us, losing her is very scary. Plus, she's awesome with Elise, cares greatly about all the childen and has been a tremendous help to us all throughout these difficult years. She's a single mom herself, the economy is tough right now and I wouldn't feel right "kicking her to the curb". I also fear that I'd go crazy being home alone with the kids and the therapists all day every day. It's just a really tough decision. I also feel super guilty about how little extra I can do for the boys because of my work schedule and stress and primarily because of Elise's therapies. They give up so much because of their sister's problems and now, they'll possibly have to start spending long days in school/day care before they're ready. It's a real conundrum, my word of the day.

These are the things in my head today. Given that it's only 5:00 am, it's pretty heavy material to digest.

I found a doctor very close to us who sees autistic children and examines all their issues. He works with a theory of neuro-immune problems in these children and off the fact that autism is a medical problem, not a psychiatric condition. I definitely agree with this and am hopeful that he can help us identify and possibly resolve some root medical conditions that Elise is suffering. He has not found a "cause" for autism, but has found clues and is a huge proponent/advocate of treating autism as a disease of epidemic proportions and funding research for it as such. I pray that the funding places are listening, but all signs point to the fact that they are not listening enough. In CA, autism spectrum disorder now strikes 1 in 91 children. Does it need to become 1 in 25 before it's addressed properly? Who's going to support these children in the future? I also find so much ignorance from people about this statistic. I've heard, "Yes, but how many of those children are high-functioning or 'just' Aspergers?" Wake up people, high functioning is an arbitrary label and both high functioning and Aspergers individuals can also face significant impairments in their abilities to function independently in society. Conversely moderate autistics can be taught to function independently with lots of help and finding a niche for themselves. It just depends on how the disorder manfiests. Look at Temple Grandin. I'm no doctor or diagnostician, but she certainly does not sound as though she was high functioning as a young child and she still shows obvious autistic issues. But she's amazing and a heroine. Maybe this is just the chip on my shoulder because Elise does not fit the high functioning or Aspergers label. My point is that the labels are arbitrary and somewhat meaningless. It's the individuals and the particular symptoms and behaviors that they experience. Elise is incapable of obtaining the "better" labels because of her speech difficulties. She is perpetually boxed as lower functioning because she doesn't talk. However, she has some other fantastic points above and beyond verbose autistics, who by the way may just be echolalic. For crying out loud, I wasn't very intelligible until 5 and I'm not a low-functioning autistic.

Sorry, I went off on a tangent there. This is stemming from hubby's discussion with Elise's teacher and vice principal yesterday. They both wanted to know what box she fit into and their questions seemed a bit biased to him. I fear that she is being set up to fail before she even begins and it makes me ache for her. Just give her a chance as an individual. She needs to be exposed to typical children even though she can't talk yet. How the heck is she supposed to learn to function in society and live independently someday if she's only with other very impaired children? The speech will come someday. I know it will. I just need to protect her until that time to make sure that she isn't labeled as low-functioning or mentally retarded until that happens.

This is our mission. We didn't chose to accept it, it was thrust upon us. We're not backing down. She will succeed. She has the determination and desire and parents willing and able to provide every opportunity to her and the power of that cannot be underestimated.