It's one of those trite little sayings that people say to you when your reserves are empty, and the general idea is for you to have "faith" that things are going to work out somehow. It's a convenient little thing for the people who on their feet to say to the people who are not.
I still wish I could put into words the despair I feel about my son not talking. It's not like a one time slam of hopelessness. Instead it's like someone's put a little hole in my tank. So it just leaks hope, slowly, steadily, agonizingly, during every moment of every day. It must be what it feels like to bleed to death, only I never seem to die. I just keep draining and draining.
I can hardly stand to participate in my son's therapies anymore. It's just means one more hour of watching a therapist fail miserably with my son, one more hour of him fighting and screaming and fighting and screaming, one more hour wasted. Every moment that he doesn't talk past the age of four years old is a moment closer to him never being able to talk at all. And every day is filled with an endless number of these moments. Every time I look at my son, he's still not talking. And I don't know how to, deep down, make that okay with me. It makes me resent the therapists. It makes me resent God. And, worst of all, it makes me resent my son. It's enough to kill a mother.
Shane and I, and Cale's psychiatrist, have actually reached the point where our biggest hope is to medicate Cale heavily enough to keep the pain he experiences, by not being able to communicate, to a minimum. He gets incredibly frustrated by not being able to communicate, and he screams and screams and self-harms and screams. But if he's sedated enough, he's not as disturbed by it. Then he at least seems happier. It's a horrible, horrible thing to have your biggest hope become proper sedation. It's what should happen for a person just before they die, to keep them comfortable. It's not what should happen for a child who's just starting out in life.
Well, we've recently had a spark of hope. We found out, a couple of months ago, that the cut-off age for the early invention program in Montana is five years old. The cut-off age for the same program here in Arizona is three years old. What that means is that Cale is too old to enter the program here, but he's not yet too old to enter it in Montana.
The state early intervention programs provide ABA therapy for children with Autism, which is a behavior therapy that, when provided 20+ hours per week, has an 85% to 90% success rate in helping children with Autism learn how to talk. The way it works in Montana goes like this - you put your child's name on the list and, once every three years, they randomly pick fifty kids (yes, out of the entire state) off of the list. The fifty kids who are picked get 20+ hours of ABA therapy per week, and the rest of the kids in the state don't get any. The disgusting fact is that they actually call it a "lottery."
We've always thought it was too late for Cale to get ABA therapy through a state program. And since Shane's insurance company doesn't cover anything at all for Autism, and ABA therapy is impossibly expensive to pay for one privately, I had resigned myself to believing that Cale might never learn to talk. But this news brought us some hope again. If he did win this "lottery" then he would get 20+ hours of ABA therapy per week until he was eight years old.
The problem, of course, is that in order to put your child's name on the list, you must be a resident of the state of Montana before your child turns five (which, for Cale, is on Sept. 8th of this year). So we decided that we needed to move back to Montana and that we needed to do it fast.
There were other reasons to move back as well. I could afford to go back to school and work on my doctorate in Montana. And, our entire family lives in Montana. And, we've reached the point, financially, where we can't make our house payment here in Arizona anymore.
When we bought our house here, we didn't yet know that we had two disabled children who would require someone to be around for countless, useless therapy sessions every day. We also always assumed that Cale would go to all day kindergarten this year, freeing me up to go back to work about the same time our students loan payments came due. However, as it turns out, he misses the kindergarten cut-off age here by one week. Therefore, he has to do another year of pre-school (which is only two hours per day, four days per week). I tried to fight this, playing the special ed. card and everything. But they still won't let him into kindergarten this year. So I have to stay home with him for another year, and our student loans have come due, and they've made it painfully clear that we can't defer them any longer. In a nut-shell, we're losing our house.
My grandma wants us to move back to Montana and get Cale on this list so badly that she offered to help us buy my mom's old house in Montana. It's only a two bedroom with an unfinished basement. But we figured it would be worth it for our three kids to share a room until we could get the basement finished, especially if it meant Cale could get on this list. So we devised a plan of attack, and tackled several things simultaneously.
We went back to Montana for six weeks and rented my mom's house so that we could get it ready to move into. At the same time, Shane worked virtually. The idea was for him to show the company that he works for that he could do his job virtually. That way, they might be okay with him working from Montana on a permanent basis. He put in extra hours and took business calls at all hours of the day and night (of course, these are things he always does anyway), and he did such a good job that they complimented him on no one noticing that he was in another state. And since other employees from this company work virtually, Shane thought it was a no-brainer that they'd let him do it too.
At the end of the six weeks, once we'd really gotten all of the information and had finalized the decision, Shane called and asked his boss about staying in Montana permanently. He explained the early invention program and what it might mean for Cale, and he asked his boss to support him. His boss did support him, which meant that it was a go. However, the boss informed Shane that it could be a bit of a process to get it finalized. So we came back to Arizona and began the "process."
I have to say, I almost felt like I was coming back to life again. It was like someone had plugged the hole and my tank was filling up again all by itself. It had been so long since I'd felt that way. And I kept repeating to myself and to anyone else who would listen, "There's still hope of Cale learning to talk. Can you believe there's still hope of Cale learning to talk?" I can't tell you how it nourished me to have that kind of hope again. My sweet, sweet boy, would have a chance. And we would be able to give him that chance. And we were already devising ways to get him off the medication. Because our boy might have a chance of learning how to talk.
I was also excited that I'd be able to go back to school and begin work on my doctorate. You see, Cale doesn't miss the kindergarten cut-off in Montana. He'd go to kindergarten all day there, and I'd be freed up during the day to begin school again myself. We'd have a little house that was our very own, which took a great deal of the sting out of losing our house here. And we'd be with family and friends again. Wow. With all that we've been through in the last few years, it was finally all going to be worth it. With all that we've been through, we were finally going to be able to pick up our poor, old, brutalized hearts, and go home. Where our son would have a chance at learning how to talk. God. It all just seemed too unbelievably good to be true.
Well, it was of course. The company said, "No."
The decision didn't come from Shane's boss. The decision came from upper levels, levels high enough to be completely detached from Cale and whether or not he learns how to talk. And the whole thing has left my poor husband, my otherwise unusually optimist, cheerful husband, utterly and indescribably down. He hasn't actually been back to work since he got the news.
The question for us, at this point, is what exact lengths are we willing to go to to get Cale on this list? I've already sacrificed my career for the sake of our kids. Are we willing to sacrifice Shane's as well? Are we willing to sacrifice the security of all of our children? Are we really supposed to gut ourselves completely so that Cale might have place on Montana's Wheel of Fortune? If not, then I guess we stay here. Where we'll lose our house and hope we can find something to rent with shitty credit. Where I can't go to school because I have to stay at home to participate in pointless therapies. And where my son is medicated. Heavily. Because he isn't learning how to talk.
I keep trying to find something good in this situation, some little nugget of wisdom to give you here. But I guess I just don't know what to call this besides, "Dropped on your ass." And the question for me personally has become - how can a person continue to function when the God that is personal to them, who is supposed to love them and take care of them, lifts them up so high and then drops them with such entirety? And the answer to that, I'm afraid, is that I really don't know. Seeing an old camp friend this week isn't even cheering me out of this one. And seeing an old friend from camp is something, I must confess, I would ordinarily call a miracle. But this time I'm going to call it a coincidence.
