I am constantly blown away by this experience. "See the truth," I keep saying to myself, "That God is here and is as concerned with our human affairs as we are." That doesn't mean that he can (or should) make things go the way I think they should go. Nope. It just means that I'm a small part of a very big picture that I can't see all of with my tiny little perspective on things.
ALTCs (Arizona Long Term Care=Medicaid) has LOST all of the information from Isabel's interview. You know? The interview we prepared for. The one we put Isabel back on gluten (and made her very sick) for so that "they could see what Isabel is REALLY like." The one we went through HELL to prepare for and then finally did, spending two and a half hours answering grueling questions about every single detail of Isabel's functioning (during which Isabel sat under the table and cried). Then we waited five long weeks for the results (whether or not she'd get therapy), only to find out that they LOST it all.
Whoops. "Sorry Mrs. Spears, the information from the last interview isn't available to me. The paperwork has been LOST. We'll have to do it all over again. When is a good time for another interview?" This is a brand new person. I have to convince a brand new person of Isabel needs. Are they conspiring against Isabel so they don't have to come up with the money to help her? Or are they really just stupid? It's difficult to tell.
AND the ABA class we registered for, mysteriously shrunk. Suddenly, they cannot accommodate Shane and I during the month of April-May. We can try to get into the class again May-June. The only problem with May-June is that I HAVE NO HELP WITH MY OTHER TWO KIDS IN MAY-JUNE for two mornings a week for five weeks. And, no, we cannot ALL attend.
So, there went THAT chance. I am looking into other options. I feel like the universe is saying, "Oh...did you want to actually help your kids? Oh, well, good luck slamming your head into THAT brick wall."
You know? My kids have a CHANCE at becoming productive and self-supporting future citizens, IF they receive the therapies they need to achieve that end. And the younger they are when they receive those therapies, the more of a chance they'll have. Neither of them are currently getting therapy.
I know it doesn't seem like it should be the state's responsibility to help Autistic kids. It should be the parents. I agree completely. However, the average cost of raising one child with Autism is three and a half million dollars. We have two of them (so that would be $7 million for us).
Shane's income is good, but it's not THAT good. If I could get an ordinary daycare to take my kids, I could go work. But two of my kids have "special needs" which translates to "I'll have to pay more than I could make for "special" child care."
The two BASIC therapies (the bare minimum) that Isabel needs right now (speech and occupational) will cost our family about $1200. per month out of our own pocket. Even if we walked away from our house, we couldn't afford that. And even if we could make that work somehow, what about Cale? Cale needs more than two basic therapies.
The therapies either need to be affordable for the families OR companies shouldn't be able to pass these things off onto the tax payers. Unfortunately, neither of those is necessarily the reality. So, the burden (of us anyways) currently remains on the state. And I believe the states have two choices here.
The bottom line is that one out of every one hundred children are being born Autistic. That's not a small percentage. The states are frightened, and for good reason. We have to decide who we want to be in relationship to this. Do we want to end up with self-supporting Autistic adults OR do we want to end up with Autistic adults WE (the state) have to support? Because that will depend ENTIRELY on the actions we choose to take NOW. Do we want to help them now or do we want to take care of them later? I'm afraid those are the choices.
There's another thing to look at here. A more immediate concern for my own personal family. We always hear, "It takes a village to raise a child." Well, it takes THE WHOLE village to raise a child with Autism. And we have no family here most of the year. My in laws pop in and out of town. They have a daughter with two Autistic children in Montana and they have a son (Shane) with two Autistic children in Arizona. So they go back and forth, and frankly, I'm surprised they aren't living in, like...Zimbabwe by now.
It's quickly reaching the point where I alone cannot take proper care of my Cale. He is continuing to get bigger, but since he's not receiving therapy, he isn't getting better. In fact, he has stopped developing altogether. We're in the middle of the six month process of applying for state help for him too. But, you can see how this goes. We've been at it for Isabel for a year now to no avail.
He's getting so big. What happens when it gets to the point that I'm not strong enough to physically force him to do things? I wouldn't be able to bath him, dress him, or contain him. And if he doesn't get therapy in time, he may never be able to do any of these things for himself. So if HE can't do it and I can't do it, then these things won't get done. Then I become a neglectful careful even though I've been begging for help for months. I'm learning what I can on my own with "all the desperation of a drowning man" at this point. But still, he needs professional help.
Sometimes I can't keep him safe. I try really hard to. As long as I can get him to his room then I can lock him in there. Yes, I have a lock on the outside of his door and I lock him in. This I have to do anytime I want to take a shower or pay attention to something. Why? Well, because he has brain of a baby and the body of a big three and a half year old. And he will escape from the house if I'm not paying attention.
We accidentally left the door unlocked a few weeks ago. So, he opened it and ran away! He has no separation anxiety or safety awareness, so he just ran away! And I didn't notice right away (I have ANOTHER Autistic child that requires a lot of attention).
One of my neighbors found him in her yard and brought him back home to me (THANK YOU GOD!!!!). And I found myself thinking, "How can I do the things I'm learning to do, when I have TWO of them who need me AT THE SAME TIME?" My Autistic kids are VERY different from each other and both need very different things. It's not like I can "play" with BOTH of them together. Each of them REQUIRES a lot of one on one attention. And poor Alden. He rarely gets my attention.
Cale's lucky he didn't get hit by a car. So, should I leave him locked in his room every time I need to pay attention to Isabel or make dinner? And at what point does this type of thing become inappropriate? The good mother vs. bad mother thing went out the window a very long time ago. Now it's a matter of are my kids safe? And I do the best I can.
So, once Cale gets so big that I can't physically take care of him anymore, and a decent income isn't enough to get help with, then what? At what point will I be arrested for neglect? Will it be the next time he escapes? Maybe if he does get hit by a car or drowns in some one's pool? And how will Shane manage to work and care for Cale while I'm in jail (sitting on my duff reading books...hmmmm. I think I could fit in just fine in jail). Where am I going to find a VILLAGE?
All of this thinking has brought me to my knees. It's so dark. And it needs to stop. I could drown in these thoughts.
If it's true that God doesn't give us more than we can handle, then obviously he thinks I can handle this. Even if I don't. And what has occurred to me, once again, is that there is a big picture here that I can't see and that I am not in charge of. God has a glorious plan.
I keep saying to myself, "Be a joyous, active, and loving little atom in the body of the whole, doing MY part so that the body has a chance of being a joyous, active, and loving whole. All I can and should do is recognize that I'm an atom, and be a fantastic atom. I have to do MY ABSOLUTE best to do my little part to take care of the body, and let the others do their part (even if they suck at it).
I'll use the story of The Actor as an example. We are ALL in this huge play (raising our kids). And everyone has their part in the big production. I'm the actor (and ONLY the actor) and it's my job to perform my part with all the passion I can muster. It is NOT my job (or my business), however, to direct the whole play. Directing the play is the director's (God's) job.
Now, being an actor ( a mother), I do need some awareness of what the director is trying to do. I need to follow his guidance like my very breathing depends on it. And I have to act on that guidance.
I also need to let the stage hand take care of the stage (the developmental pediatrician and/or the psychologist), let the light guy take care of the lights (DDD and Medicaid and/or insurance company), let the ballet people take care of the ballet (therapists), let the scenery people take care of the scenery (the schools), and for God's SAKE, let the director be the director (let God be God). He's the one who has to get all these things to come together the right way.
The play has a CHANCE of being a huge hit, IF I do my part and let everyone else to theirs. I cannot possibly know how it should all go. But I can do my part with the hope of all the blue in the sky! I can act my glorious part with every bit of my being, with all of my love, and with all of my undivided attention. It's a gift straight from heaven itself, to be given such an opportunity.
So, I need to do MY part and DO IT WELL. I have to be a present actor and do all the footwork. I need to find out what the stage is like so I know how to dance. I need to know when and how the lights are coming on so I'll be able to see what I'm doing. I need to coordinate with the ballet and the scenery people so I know how, when, and where to do my part.
And once the show begins, I have to let the others DO their part, whether they do it well or not. And my judgment on whether or not they do it well, doesn't actually count for much in light of the whole play. Why should it? I can't SEE the play because I'm IN it. Only the director can SEE the whole play. So, I'd better keep looking to him for guidance.
Okay. So what if the stage hand is an idiot and waxes the floor at the wrong time (the doctor misses the Autism the first time through), causing me (and my kid) to slip and fall? Does that mean he's evil? Nope. It just means he's a human being and made a mistake. I don't even get the satisfaction of believing he's evil.
And, what if the light guy is kind of lazy and slow by nature (the state and insurance companies are so damn slow)? What if he forgets to turn on the light during an important scene, sending me twirling aimlessly through the dark until I (and my kids) fall again?
And what if the ballet tramples me while I'm down (the therapists charge so much money that if the insurance or Medicaid isn't in place it will break us fast)? What if, after this, the scenery people had missed a few bolts and a heavy piece of scenery falls on top of me (the school neglects something really important)?
What if I break a leg? Worse than that, what if I feel betrayed and neglected and uncared for (How could you not LOVE my kids!?)? Where will the passion come from then? How can I keep doing my part? What about my hope? What about my being, my love, my attention? How is that I could give my all, only to be dropped on my head?
What if I get really, REALLY hurt? Is it their fault? Maybe. Again, they are human beings that sometimes do the best they can, and sometimes don't.
So, do I blame the director? It's tempting. In fact, it's really tempting to fire the director and try to take over the whole play at this point. Because, obviously, no one can do their jobs and I'm (me AND my kids are) getting hurt! The director should've made sure the others did their jobs correctly! He should've seen this coming! He should've warned me at least! He should've taken care of me!! After all I am really hurt here, and he should've been doing his job better!
Well...he WAS doing his job PERFECTLY. And if everyone else had been doing theirs (if everyone in the play had always chosen God in every moment of every day throughout all of time, and had taken his guidance), the play would've been very different. It still probably wouldn't have been done MY way, but it would've been different. But people don't always follow the director's guidance. And the important thing for me to remember is that the director NEVER promised me a perfect play.
So do I get to blame the stage hand? The light guy? The ballet and the scenery people? Do I get to scream and yell and cuss and beat them up? I'd really kind of like to. But, honestly, what would that do for the play?
I do have some choices here. I can try to anticipate what will happen during the next show and be careful. But, if I'm spending all of my time trying to anticipate everything about the play, how will I pay attention to my acting? How will I do MY part well?
I can quit and leave the play, throwing away my part altogether. This is the ultimate act of selfishness and self-centeredness. It would leave the play without an actor (my kids without a mom). Hmm. Not an option for me.
I can always just try to see the truth. Maybe the stage hand had a fight with his wife and couldn't concentrate. Maybe there are things going on in the lives of all these people that only the director knows about, that are affecting their ability to do their parts. And maybe not. Maybe they really are just idiots.
In reality, it is probably a combination of things. Sometimes I'll get a good stage hand to work with, and sometimes I won't. Sometimes the ballet will be fantastic, and sometimes it won't be. And maybe my damage has taught them some things about the play, or about themselves. And maybe is hasn't. Maybe my hurting is for a reason and maybe it's not. I don't get to know because I'm just an actor. I'm one small part of the whole play. Only the director can SEE IT ALL.
So what am I going to do? Well, if I care about the play (which I do), then I have no choice but to act my part with a broken leg. The only thing that the director ever promised me is that he'll give me enough strength that I can keep on acting, even when it hurts a lot. Pain avoidance is NOT what it's all about.
I also know that the hurt probably won't last forever. This hurt will heal and then there will be another hurt in the future. And it will heal, then hurt, then heal, etc. And all along, the director will personally give me his strength. I can use all of this to become bitter OR I can use it to become wise and love with a love that isn't conditional on how I'm treated or on how I think the play is going.
Maybe I can use some of this hurt to do my part better OR maybe I can use the experience later on to help another actor with their hurting. Maybe HUGE gifts will blossom from the middle of all this hurt.
Maybe, in the end, I'll realize that the play was actually perfect all along. Maybe the director knew exactly what he was doing. Maybe everyone actually did exactly what they were supposed to do and I just couldn't see it that way. And maybe my hurting was a part of the perfection of it. Maybe the play just gets bigger and better, little by little, decade by decade, etc. And I get to be a part of it! I get to experience every second of it. Maybe THAT is what it is all about.
