Some people say that God has a sense of humor. I wouldn't call it that. I don't think that God is trying to be funny at all. He does however, know just what I need, when I need it, even if I don't agree with him on what that might be.
Medicaid officially denied Isabel for the second time. I got the letter late in the afternoon last Thursday. I guess that autism, head banging, feeding disorder, and failure to thrive physically, aren't really that bad after all.
Instead of helping her now while she still has a chance of becoming a self-supporting adult some day, they've decided to wait, possibly until she's an adult and can't work because she didn't get early intervention as a child. Lovely. Then they can take care of her for the rest of her life. What an utterly fascinating decision. I apologize for the sarcasm. It's really not a pretty color on me.
It's left me with a sense that another piece has fallen out of the bottom of my support structure. I've got quite a few holes in this thing these days. Not only has it become down right rickety, but there's a big heavy ugly chunk sitting on top of it.
Isabel sits in that odd place on the autism spectrum. The center, the gray area, that spot right in between too sick for regular school and too well for state help. The professionals are screaming at me to get her therapy, but the state doesn't think she's that bad. My sweet girl. What am I going to do with her?
Alden (my dramatic one) spent the night at his Grandma and Grandpa's motor home on Friday night. He always screams, "MOOOOMMM!!!" if anyone goes near the front door. But he was gone and I forgot. I ran upstairs for five minutes, and Isabel opened the front door and let Cale out. Now, Cale doesn't sit in the middle of the spectrum. He sits on the bottom.
The neighbor almost hit him driving up to her house on her way home from work. She parked, got out, picked him up, and wrestled him to my front door (he fights hard when he's interrupted from doing what he wants to be doing, in this case - running around in the street).
She looked half traumatized as she handed him back to me saying, "He was running back and forth in the middle of the street! He took his pants off while he was in middle of the street! They were already off when I got to him! I didn't hurt him, I just didn't think I should leave him out there!!"
I actually kind of laughed. Isn't that terrible? It was such a horrible experience (and it's the second time it's happened in the last month) that I just get to where all I can do is laugh. I suppose my old "I should be a better mother" feeling rolled around in my stomach for a second, but my nerves are so fried I really struggle to muster up the appropriate guilt.
"It's okay," I said, "I know you didn't hurt him. He's autistic, needs behavior therapy, and doesn't leave his clothes on. I really appreciate you getting him out of the street and bringing him back."
She did not look happy. I might actually have CPS called on me for the first time. That's okay. Maybe if someone besides me starts crying, "WOLF" I'll actually get some support.
I looked at Isabel and said, "Sweetie, you cannot let Cale out of that door." "Okay!" she replied. This is her catch all phrase for when she doesn't fully comprehend what you've just asked of her.
Cale did qualify for Medicaid, but the soonest DDD could do an appointment with us was two weeks from the date he qualified (they move at the speed of a small snail). They're coming this Friday to figure out how many hours of therapy per week he'll qualify for. I just have to wait. I'll get help with him soon and I'm holding my breath.
I wish I could describe the anger I felt towards God and this state after I read Medicaid's denial letter for Isabel. I wish I could weave it into some glorious combination of words, giving the feeling a beautiful expression. But I've never read a beautiful description of anger, nor do I have the power to turn the black sludge into something it just isn't.
I'm afraid I'm in danger of becoming a deeply embittered, crotchety old woman in a black dress, back humped, and hacking unintelligible smoker's noises at people as they walk by. Do I want to turn into someone that no one can stand to be around? Maybe. Then I could move to Paris by myself and wander the Louvre all day every d... oh wait. No, I don't:)
I'm not a person who can afford to be angry (at God especially). If I throw scraps into that fire it'll just grow. It's already being fed with the pieces falling out the bottom of my support structure. I must focus on the remaining nails and wood, in spite of the fact that the pieces keep falling off.
When anger surfaces I have to pray immediately for it to be removed. Now, I can't expect it to dissolve like Alka-Seltzer just because I ask for it to. But if I'm willing to set it aside and ask for God to show me the truth, typically the truth comes which heals the anger from it's source. It took me a few days this time but the truth finally came.
The idea that God and this beautiful state with it's blooming cacti couldn't care less about my daughter, left me staring straight into a flaw in my thinking. I don't much like addressing flaws in my thinking but this particular one harasses me to death, much like my son trying to con me out of a glass of chocolate milk. The flaw is a "perpetual problem." This is what my counselor calls it. A perpetual problem is one that doesn't go away and must be addressed again and again as it surfaces in each new situation.
The flaw in my thinking is this: If God cared about me then he'd... (fill in the blank). If he, she, they, it, cared about me then they'd... (fill in the blank). If... (fill in the blank) happens, then I'll be okay. And if it doesn't then I won't.
I was driving down the road the other day to go meet Shane for lunch. Cale was quiet so I got thinking about a friend. This got me thinking about my relationship with God which is usually a good thing, but I was feeling really mad at God. And the problem with being mad at God is that I need him. Bad. I need to believe that he loves me and that he has a plan for my kids. So, I decided to try to view my relationship with God as a friendship for a moment.
I started thinking about my friendships in general and I realized that I'm such an all or nothing kind of person. If a friend treats me the way I want them to then I feel important and loved, but if they don't then I don't. Yeah. And what's really broken about this, is that this is how I have tried to function in my friendships for a very, very long time.
I think that people must either love me or not care for me at all (in my human relationships it's probably, realistically, somewhere in between) and I base this love or not on my perception of how I'm being treated.
The problem with this is that I've never been very good at figuring out what's an appropriate amount of love in a friendship. I tend to try to make it too big or too small, when it should really be the just the right size. I (my ego) should be the right size. It's not all about me (and it's not all about MY kids). It's my perception of God's love that's off, that it has anything whatsoever to do with whether or not things are going my way. The way I see things is often so limited.
If I say, "If God cared about me then he'd make Medicaid give Isabel therapy," it's a bit like my son saying that if I cared about him, I'd buy him the candy bar. I do care about my son AND I'm not going to buy him the candy bar AND he doesn't necessarily get to understand why.
This thinking flaw makes a couple of assumptions that just aren't true. The first, of course, is that things need to go the way I think they should in order for me to be okay. That people, places, and things need to line up in a particular way, in order for me to be okay. They don't, and ironically, I'm still okay. The second assumption is the REALLY self-centered part; that it's personal when they don't.
The physician that reviewed Isabel's case and rejected her, didn't know Isabel at all. Whether or not he/she "cared" about her is completely irrelevant. He/she wasn't rejecting her personally. It hurts, and I don't know what it will mean for my family, so I want to take it personally. But why do I have to make it some one's fault when I've been damaged? Damn it! I really, really want to make it that physician's fault!
The same type of thing occurred with a group of my friends recently. I asked them for help with my kids and they said, "No." I'll spare you the details but, to make a long complicated story short, it was going to be too hard to help me.
It wasn't personal and that I quickly came to understand and accept (sort of), but afterward no one ever called to see if I was okay. That part felt personal. They knew I had just found out my kids are autistic, that my friends couldn't help me with it, and that I had to be feeling hurt and alone. But, not one of them ever called.
In a state of self-pity, I called a friend of mine in Montana and told her about it. I remember saying to her, "I've been hanging out with these people for almost four years. Do you suppose that I made them mad? Do they hate me? Or do they just not care about me? I know I shouldn't separate myself from people, but how can I NOT?"
She sighed and said something like, "I wish so badly I was there with you and I love you very much, but it isn't their fault. You know their decision wasn't personal. As far as them not calling, well, I'm sure it's neither that they hate you or that they don't care about you. They probably think you're mad, which you are, and they probably don't know what to do with that. People don't always know what to do for a friend who is hurting, especially when that hurt is coming out sideways all over the place. I wish they did, but they don't."
That group did me a favor actually. It's taught me to deeply value the love and support that I do have in my life.
I had someone tell me recently that when you have special needs kids, that's when you find out who your friends are. I do find that to be true. Later on a few of the people out of this group of friends decided to help me after all. It wasn't in the way I had originally planned, but it has turned out to be a very precious piece of my support structure. I've come to discover that no matter how hostile the world feels sometimes, there are always a few big hearts with a capacity to love giant love at the toughest possible time. When it's inconvenient.
Things will not necessarily go the way I think they should even when it looks really, really important to me that they do. And it isn't God's fault. The other day, I was watching my children fight viciously over who had more happy meal toys. It was clear to me that I had nothing to do with their argument and I thought it was a stupid thing to fight over. I said to my kids, "No matter the outcome of your argument, I will still be here make sure you both have enough happy meal toys:)"
Suddenly I could picture God as this parent figure watching me fight with Medicaid over therapy funds, and I realized that I'm not fighting with God. I'm fighting with siblings. People I have to share this planet with. I also realized that no matter the outcome of my argument with the state, God will still make sure that I (and my children) are taken care of somehow. Oh thank God I don't have to be mad at God. I'm still working on not resenting the state.
The biggest gift in all of this, of course, has been the shift in my thinking. I'm still trying to grasp fully that my faith needs to be in God, not people or circumstances. Maybe my support structure needed to loose it's weakest pieces so that I can focus on the pieces that are working and strong and growing into something that can support this time in my life.
Shane got the job at the community college. He'll be working his usual ten hour days and IN ADDITION he'll be teaching from 6-10pm three nights a week. God that's a lot of hours. But it'll pay for Isabel's therapy. And I've got to make a more serious effort at getting stuff published. I've started ABA training for Cale and will be able to implement that round the clock for him and Isabel in the home. I'll have to write after the kids go to bed from now on. Pray for us. It's going to be a long and happy year.
