Hey there!

I forgot I even had a Blogger account. How embarrassing. I don't have time at the moment, but I will get on here, share some things, and hope to generate some reader interest again. Happy New Year!

The Summer Countdown

The summer is on. Only one week in, and I'm already a screeching mess. It's almost, pretty nearly, impossible to take both of my children anywhere together, when I'm alone. On rare occassions, I can take them both to the grocery store. I can stuff my boy in the cart, with a snack and a cup, and hold my daughter's hand on the cart handle under my hand. I have to keep an iron grip on her, because she'll take off down the aisles to dance, spin, and flap to the muzak, and sometimes feel up the other customers. One poor man got his butt patted lovingly by my daughter. I had to grab her, apologize, and move on. Luckily, he was amused and didn't seem to care. I figured he must have kids of his own and gets that they're a little freer with their affections. These trips mean I can only buy what fits in the "seat" area of the cart, or my son will start tossing things out. Other than this, we're stranded here at home and my shifts are about 17 to 18 hours at a time. My husband leaves for work, and I'm here, holding on for dear life. I do get my respite caregivers coming once or twice a week. And instead of just holing up in my room, and getting away, I try to clean the HIDEOUSNESS of the house. It's all just getting so...well, a hamster cage comes to mind.

We did go to the beach on Friday night. It's been hot and humid in San Diego, for us anyway, and we didn't get there until 6:30 pm. And it was still busy. My husband and I stood guard as the kids just kept walking deeper and deeper into the ocean. The nice thing about this beach is there's rarely any rip currents, and the tide was coming in, so no matter how hard they tried to go in, the waves would just pick them up and push them back up to the shallows. They've learned to jump over the waves, and hold their breath, and bob up when they get bowled over. It's a relief.. We used to have to keep an iron grip on their arms while the waves pummeled us. The only downside is they scream and cry when it's time to leave. And they usually fall asleep on the way home. I hope to repeat the trip this week. It was lovely, and it was fun for them. And they slept really well...

The things we can and can't do

So I went up to see my father. I flew to Portland, stopped and got my cousin whom I hadn't seen in 20 years, and we drove the rest of the way to Walla Walla, Washington. This is the little town where I did most of my growing up years, where most of my grandparents are buried, and where a large portion of my father's family still lives. My father is the black sheep of the family. He played in a band of his making from his younger days until I was about 11 or 12. That's when my mother put her foot down and decided that we wouldn't travel around for the band's sake any longer. This was the beginning of the end of their marriage. My father has zero education, no real ability to learn, and pretty much believes whatever he sees on television if presented in a credible fashion. He is the quintessential white trash guy. Because of his lack of education, the jobs he has held since quitting music have been mostly as a laborer, but he's always had some scheme in his head of how to make "easy" money. He did have a kind of successful stint off and on as salesperson, with one organization or another. He has the ability to bullshit with complete belief in everything he's telling you. Because of the complete disintegration of my parents' marriage, and because he elected to remain an alcoholic and not do a thing to try to save his relationships with his children or his wife, my mother eventually relocated my brother and myself to Southern California, and he remained in Walla Walla for the rest of his. Because of this, my brother and I were estranged from a large portion of our family, and there is a lot of awkwardness in trying to be close to these people now. From the time he moved back to Walla Walla, his slide downhill was at times gradual, at times avalanching, and at times it almost appeared he would pull up just a tiny bit. But the truth is he's in poverty, the worst kind that any of us imagine our elderly population to be forced to exist within. Utterly dependent on the State and Medicare for his housing, food, medicines, and medical care, without options, and pretty much limited to just staying within his own dwelling all the time. Because of the way he behaved and the stupid things he did, most of his family who do live near him have had little to do with him. I cannot blame them in the slightest. I too would choose to have nothing to do with him if all I allowed to be in my heart is the bitterness, resentment, and anger that he deserves. But the energy to maintain that attitude is more than I am willing to give, and far more than I have at my disposal. It has been life changing and incredibly easy to forgive and allow all that God will do with that forgiveness to enter my heart and change my spirit.

I went up to Walla Walla with several goals in mind: to get power of attorney over his bank account, to get his Living Will organized, and to share Jesus Christ with him. And I did do these things. But my Spiritual gifts are not evangelism. I might be able to point to Christ, share the Gospel, and kind of shove someone in that direction. But I don't have what it takes to "close the deal" as it were. I never actually offered to pray with my father, though the opportunity came up briefly. I wish now that I had. Not just pray with him, but pray for him in his presence. I think he did come to some understanding that his time is nearly up, and he spent some time making up with some people he hadn't been on good terms with prior to his surgery. But he didn't make it to church with his neighbor, and he hasn't actually asked Jesus to be his Saviour. And I feel I let him down, and let Him down. Oh, I know, I'm not responsible for someone taking that step, you can lead the horse to water, but you can't make him drink, and all that. I know that. But my heart knows what God knows--that I didn't do absolutely all that I could have done to help him spiritually. I chose what to do in the financial and housing realm of his life, and I purposely did not do all I could. But I wish I had been more willing to humble myself, be more willing to cry in front of him and anyone else who might have been there, been more willing to be the Fool for Christ, as Paul described himself. I know too that God forgives me for not having the guts and for not being utterly confident that He would have given me all the words and whatever I needed. I pray for my dad all the time, and I pray he will have the chance to take Christ's hand before he actually departs this world. I think he'd be amazed at meeting up with his mother again in heaven, and learn she doesn't hold anything against him now, how could she? That he'd be welcomed and rejoiced over by many he thought didn't love him in this life.

He still has a long way to go. He had surgery, needs to recover from this, have radiation, probably be moved into assisted living and be rid of all his debris and junk from his life. I don't know how much longer he'll have. I know I have some help still to give. And I pray God gives me another time to be with him, bow my head, and offer up a prayer that moves my dad to walk into the forgiveness and grace that Jesus died to give us.

Abandonment Issues

I haven't wanted to blog for the last few weeks, because all of my regular routines have been off. I travelled to Walla Walla, Washington to see my father who was diagnosed with cancer and who has recently had surgery. I'll blog on this some time later.

Yesterday was my children's last day of summer school. I'm trying to figure out how to embed a countdown clock on my blog til the first day of school. It's not that I don't want to be with my children or be with them during the summer. I do. I just don't want to be with them the way they're going to be all summer long. I just don't want the endless streams of screeching and flailing of arms and frustration and crying. And their behaviour isn't so good, either. (Ha ha.) It's so frustrating, because for months out of the year, I'll gather videos, games, toys, crafts, and hoard them until this lull between school years. Then, bit by bit, out they'll come, and I anticipate the fun we'll have in making our own T-shirts, and creating a "circus tent" out of old sheets, and finger painting, and planting sunflower seeds, and making Flubber (find the recipe here http://www.recipezaar.com/129414). But instead, I end up playing referee between my two kids, keeping them from eating nothing but snack foods all day, and struggling to keep the house in any kind of order, and by the end of the given week day, I'm a mess, and prepared to lynch my husband upon arrival home, duct-taping him to the recliner in the family room, put those eyelid openers on him from A Clockwork Orange, and force him to watch hours of Blue's Clues or Teletubbies while I escape, my diabolical laughter echoing behind me...

It doesn't help that I'm emotionally fragile just now. I'm worrying about my dad endlessly, but forced to admit and deal with the fact that I can't do anything to change or alter what he's going through. I'm frustrated that I don't have wads of cash to throw at his situation and alleviate the family who live up there near him from all they're going to have to do to help him. And on top of all this, I'm losing people who've been in our lives for a long time, people who just have to move on.

Our son's teacher in his SEEC (Special Education Early Childhood) class for the last two years won't be his teacher any longer. I have a hard time with separations from people I care about. It is a great struggle for me. It is one of the reasons why I don't work very hard to make new friends. I'll hurt so badly when they have to leave me, or I leave them. I have valued the input and the enormous effort made by his teacher these past two years in ways I just can't begin to put into words. I have felt peace and calm and have been comforted by the assurances she was able to give me in regards to his progress and abilities. She had been willing to tolerate my absolute indifference (nay, deliberate flouting) of the bureaucracy of school district policy. Any time it meant she wouldn't be directly in trouble for my actions, she really didn't give me any hassle. But when her butt would be on the line, she let me know, and I gladly backed off when I could. When I couldn't, I let her know but made sure the powers that be knew it was my own actions, not hers, that were responsible. And instead of trying to change my attitude, she understood it and tried to be a liaison between my raging independence and the school's need to do paperwork. I had wanted to go to school for the last day of summer school, to take pictures, to participate in the last day festivities. But I knew if I did, I'd end up bawling. I'd end up needing pity and solace and comfort. That's not what I wanted. I wanted to be brave, cavalier, generous, and fun. I simply didn't have it in me. I'd been bottling it up for weeks, and was fortunate enough to have my dad's cancer to deflect me from curling up in the black corner of reality that I won't see this woman and have her humor and caring as a part of my daily arsenal against the deep well of autism in my family's life. Plus, the wonderful aides in the classroom who have also been our respite caregivers. I won't see them every day, though I'll see them on occasion because they're graciously allowing time in their schedules to keep doing respite for me so I don't have to try to find someone. I almost said "score" someone. It kind of feels that way--the desperation in trying to just get one or two hours, just a little taste of freedom....

So I was doing okay, until the one aide I have on Fridays brought my son home from school, for what I imagine is the last time. THEN I burst into tears. While I recovered from this emotional moment, the phone rang. It was my social worker from the Regional Center. I've had her with my family for almost 4 years. Since my daughter turned 3, and they put me from the Early Childhood worker to the whatever they're called division. She called to tell me that Friday (yesterday) was her last day. That she's moving back to Texas, and to give me the name of her replacement. She only had the first name... I had to ask a few times for the last name.

Why does everyone leave me at once?? I have issues already with this, and now with my kids' loving care givers, teachers, and social workers involved, it becomes an even larger, more emotional undertow. I emote for my kids, I think, at times. I'm just expressing what I imagine they would, if they could understand. Which they can't, exactly. And I think this is what makes me even sadder.

So now I can hear back from you

I have changed settings, as some people have checked this out and reported back they couldn't comment. I hope you can now. I do want to hear back from people. That's kind of the whole idea!

So my father had his biopsy, and I spoke with his doctor who described the lesion as being inoperable, but possibly shrinkable with radiation. He mentioned chemo, and I went on about how his health is already wretched, and I doubt that he's willing to change his lifestyle as it is, how can he start chemo? He'll end up having to leave his apartment and go into a nursing home and not have anyone there to hold his hand while he dies. I have to just let go of some of this. There's nothing I am able to do. I can't abandon my kids who need me, and leave my husband who needs my help, for weeks at a time to sit and hold my dad's hand, because he so alienated his family and friends all these years when he was alcohol soaked and did nothing to prepare his life for this stage. I love him, I will help him, but my friend Rodger gave me the BEST advice about dealing with this. Do what I can because he's human and deserves the dignity of being human, but I won't give him preferences that are not his to have because of how he chose to live his life. I'm not saying it right, but hopefully you get the idea.

So school ends next week, and I'll be going away the day after summer school starts. I hope it isn't going to be too hard for my husband to get the little buggers in the car and to their separate summer schools on time. I'll have 2 1/2 precious hours per day to myself until July 20th. Then they're out til after Labor Day. So I need to make a note on the calendar: "RENEW VALIUM RX."

When Duty Calls

My father is in the process of dealing with what I believe will turn out to be a terminal illness. This is not surprising, and has been on the horizon of our family's expectations for years now. From as long as 10 years ago, when his first colonic polyp was found, the grave discussions (via phone) of what they might find would begin. Never did this cause him to cease smoking the 2 packs of unfiltered Camel cigarettes per day. Or adjust his eating habits from high fat, cholesterol, and low fiber to, you know, opposite that. Any time he would come down with bronchitis and have to have a chest X-ray, we'd hear that perhaps they had found a shadow or a mass. But so far none of those came to pass. Suddenly, when he went in for dentures, the dentist refused to pull his teeth due to a massive sore in his throat. Turns out it is quite likely cancer. And a biopsy is planned, lymph nodes are due to be removed, and there are spots on his thyroid. It's all kind of winding up, and bowling down, and the pins no doubt will be falling.

Being the eldest child, I feel somewhat obligated to go and see him, help arrange what I can for now, talk about final wishes, and then wait. There's no property to be dispersed--he is a pauper and on Medicare, Medicaid, welfare, and so on. There's no fabulous relationship between us. For almost all of his adult life, and most of my entire life, he was an alcoholic. He cheated rampantly on my mother, was absent from my life, and left my brother an emotional train wreck that is still proving to be nearly impossible to put back on track. The blessing of diabetes in his life meant he could no longer drink, and upon his diagnosis a few years ago, we were able to begin speaking to one another. A few brutally honest discussions here and there, but mostly the same bullshit he always spewed. But they were still pretty nice. Nicer than what I had growing up. He's a grandfather, and he loves his autistic grandchildren, and is always amazed to hear of their remarkable abilities and gives sincere sympathy when I tell him of their limitations. He tells me I'm a good mother, and I like hearing that from him.

So many of my friends and family are remarking that my making the effort to go see him (he's about 1200 miles away) and begin the process of settling his life is more than he deserves. And that my duty lies in taking care of my husband and kids and not leaving them for some guy who didn't even have the decency to pay child support. That no amount of money spent on my part, time devoted to travel, seeing him in his misery, will fix the past. That it won't make up for anything. That I can't change it now. I remind them: the fixing would have been on his part. He's the one to make up for things. And things are long past changing. Nothing will change now. But he's still human, he deserves dignity and decency in his dying and if my going up there to talk to those who watch over him now to see to these, then I've done my daughterly duty and I will know God will take care of the rest. I will know I did do what I could, to the point that I should, and it's not based on what he deserves, it's based on being decent to someone who, had he the chances to do some things over, I have no doubt he would.

I only wish I could take the kids. I know he would love to see them, and if time and cash allowed, I might. But my son, bless his little obstinate heart, is a runner and has no desire to do what he's told. And while I would love to take my daughter, and I think she'd do very well on a plane and stuff, I just simply have to get things settled too quickly for this kind of thing. I think she'd be a total hit with everyone. This is one of those things that we deal with--how to travel to deal with dying parents when you've got autistic kids. No Uncle Buck to call and see to them. Instead of just arranging for the birthday party, it would be, "You know, Maisy screams if she hears Elmo, but Miles insists on watching it...maybe let her spin in the kitchen while he watches that..." Man, I could remake that movie...

Why do I think my own care is a waste of time?

I'm finally getting a CT scan today that I was supposed to have a few months ago. There was fasting bloodwork I was supposed to get done in February; I just finally got that done on Wednesday. Taking the time to do these medical things seemed wrong to me. I had way too much going on with both of my kids at the time, and I didn't feel right about diverting my time and energy to myself. Why do I feel guilty about spending time on myself? I frequently will make appointments for a doctor's visit, or to get my hair cut, or to go see a movie, and will have to reschedule it two or three times before it sticks. I gave up trying to have Tupperware or candle parties...the ladies who do these as businesses just got sick of my constant rescheduling needs.

Taking time for myself is something EVERYONE says I am "supposed" to do. Making it an imperative doesn't mean I'll actually accomplish it. Making it a "supposed to" just makes sure that I'll feel guilt for not having done it. Guilt--my own family's legacy. We still feel guilty for things my great-grandmother used to say. We still try to make up to each other things said, unsaid, done, undone, overdone, undercooked... And I am still feeling guilty for the way my kids were neglected two summers ago, or because I didn't spend a full 30 minutes reading to them yesterday. Do autism parents feel more guilt than typical parents? Maybe. Especially working autism moms. They get the double whammy of being a working mother (what mother ISN'T a working mother? Trust me, what I do is work!) and being a special needs mom who isn't hovering over their child for every possible chance to make the difference. But I think the autism parents feel a greater yank of guilt for what we choose not to do. The stories we hear of a family that sold their house, quit their jobs, and devoted each and every waking moment to their autistic child seem to shoot arrows into the hearts of us who don't have homes to sell or jobs to quit. And yet, shouldn't we be doing more and more? But at what cost to the rest of the family? So, I can use this kind of logic to force me to go to the doctor. If I am not well, if my health is neglected, how much less of me is there to devote to working on my family's needs? And giving my children all they can for their continued progress?

I have to start drinking barium in a few minutes. I'll stop posting now so I don't feel compelled to write about the texture and flavor of the goop. No one needs THAT.