Love and the Necessity of Hope

I dreamed about a love story just before waking today. The details are fading now, but there were two sisters and one man. He was remarkable. Strong, handsome, caring, spiritual, funny, absolutely perfect. In the end, he dies. The dream ended like a movie, with the credits running. The title of the dream/movie: Yearning. I woke up with that word in my head.

It was an interesting wee hours dream for Valentine's Day. It left me feeling very melancholy. Perfect love has died. Two sisters are heartbroken. Traditional dream interpretation tells me that the three are aspects of myself.

My energy is returning. I can lift Daniel again. I can eat just about everything, after a long period of only tolerating bland food. The depression is still lingering, though. I read once that depression is the impression left by fear. I was out of my mind with cancer-fueled fear and worry throughout November, December and January. It's going to take awhile to bounce back, and maybe I will be a different me when I land. Will my sister-self emerge, wounded but walking? Has my masculine side withered? I've always held it together, but now...

One of my students said to me today, "You're not the same since you came back." I asked how I'm different, and she said I'm not as cool. I'll second that. Sometimes the blues are uncool.

There are things to be grateful for. I'm thankful that I have insurance that paid for the majority of my surgery and hospital costs. Still, my 20% is raining on my plans for paying property and income taxes this year. I think financial fear ranks right up there with health scares. I also want to take Daniel to Austin, Texas this summer for a communication camp that uses the Rapid Prompting Method. It's not free, however, and I may not be able to make this happen. Do I put down a non-refundable deposit next month and trust that the rest will come? I am unsure. I was so excited about it just a few months ago.

A newsletter came yesterday from a holistic doctor in my area. She writes about the necessity of hope in regaining health. I know this to be true. Without a sense of hope and expectation, life feels flat. I've been fortunate enough to have always been able to rustle up some hope for the future. Lately, not so much. All I can do is try to be hopeful that I'll regain hope. I miss my optimism.

Last night in the middle of journaling about my sense of broken dreams, I did a gratitude list. Midway through the list of disappointments I was writing down, I realized I needed to switch gears. Next to the  negatives about money and loneliness, were my list of things that are good. I've also been saying 40 day prayers since the school year began. From Jesus' 40 days in the desert, 40 days of rain for Noah,  to the Israelites 40 years of wandering in the wilderness, this number is often in the spotlight. I'm putting my energy out there and affirming that specific things in my life are going to get better.

I see the results. My first prayer was focused on finding the right school/people/program/community for Daniel and our family. I always end the prayer with the caveat "according to Thy Will", because I know that I'm not in the know about all the options out there, and I might not have even conceived of the best for us, or what's needed for our growth. Not long into the prayer, our physical therapist told me that she's interested in a therapy school similar to the one in the corners of my mind. She connected me with a family who are also interested. Last week our caregiver went on an interview and met a mom who uses the Rapid Prompting Method that I've been researching and learning. I have her number.

There are interesting, positive connections happening, but still my hopes are not high. Not in this moment, anyway. To say they are just to avoid dark feelings would not be authentic, and wouldn't force a shift in my overall sense of well-being. I'm open to unexpected good. I want to believe. I'm willing for a change to come. I guess in times like these, that's all I can hope for.

Formal Diagnosis, and with it...decisions

We saw the developmental pediatrician at CARD (Center for Autism and Related Disorders) last week and he did a very thorough assessment of Dan. When he was five our geneticist wrote that he "fits the behaviors consistent with autism". We didn't really run with that, though. Now we have a formal autism diagnosis from a specialist in that area.

What now?

For years I've struggled with the school system over communication services for Daniel. In 2004 I attended workshops that the school SLP suggested to learn Every Move Counts, a program for kids with severe disabilities. I was on board. It's a long somewhat tedious story, but in the end, the school was not able to implement the program (the SLP who originally suggested it nixed it shortly after being the one to get me interested. Thanks.)  Every year I've had the same conversations, the same fruitless efforts to have his daily school life include hard hitting communication work.

So, now he has a diagnosis that's characterized as a language disorder. Me thinks they must step up to the plate.

Is a setting that's geared towards autism going to work for him? ABA is the gold standard. I've thought about the rewards that motivate Daniel. He doesn't like food. Praise? Sort of. Plus I've read a lot of books over the years by people with autism who are not happy with their early ABA training.

I tend to be attracted to the methods that aren't mainstream. Facilitated communication is one of them. I've been helping Daniel at home with a letter board and his ipad by supporting his arm so that he can point effectively. It's slow going, but it's working. I saw a documentary and read the book on Rapid Prompting, and I like the ideas the author presents. I don't do the paper tearing, but I present Daniel with two objects, tell him what they are, then ask him to point to the appropriate answer. Example: "This is an orange. This is a pencil. Now, show me the pencil." You get the idea. I just want to know how well he can answer correctly. I don't want to insult or bore him, though, and I've told him as much.

In August I'll meet with "The Team." Teachers, therapists, psychologist, etc. I have to be clear and sure about what I want for Daniel, and I'm not there yet. I'm using this time when both of us are off for the summer to get clear...or at least clearer.

Yesterday my daughter worked with him on identifying letters. He responds well to her because she's stricter with him than I am (she wants to be a teacher, and she's the granddaughter of a very good one. I think she has the touch.). The choice of teacher in the new year is going to be critical, but I don't know how much control I have over that.

So, I'm praying and musing and working with him to get an idea, a vision for what's possible. That's where we are right now.

Autism is a world. That's what the title of the movie says, anyway. Time to open up Daniel's world a little (or a lot) more.