Today my son's occupational therapist (OT), special instructor (SI) and case manager all met at his the daycare he goes to for 2.5 hours, three days a week. They are going to start giving him some services while he's there, to help him adapt his skills to different environments.
There is something both heartbreaking and touching about the idea that these three women drove in their respective cars, from their respective locations, to converge in this one place in order to help one small boy have the best chance he can at a normal life. All these people--and there are now six on his "team", not counting his parents, all working to help one little kid. It's really beautiful, in a way. It shows how good people can be. And what I want for my boy is that he is able to feel connected enough to other people to want to help them in the way that he is being helped. I don't know if he'll ever get as far as that-- that level of empathy. I sure hope so.
Friday, March 23, 2012
Thursday, March 22, 2012
God, give me respite
I have a work conference in California, am leaving a week from Sunday and will be gone for four days. I made it so that I am there for as little time as possible, so I don't have to be away from the kid. Still, because of the way the flights work, I'll have most of the first day to do nothing in San Diego. Time to myself 3,000 miles from the kid.
I'm afraid of this trip. I'm afraid that when I get four days away from the grueling, relentless, often-joyless grind of my daily life, I am not going to want to go back. Even before the diagnosis, it was a bit of a bummer to go back, because life was pretty hectic even then. But now...I don't know. I honestly think I'll be praying for the plane to crash. I do have those thoughts these days. Yesterday, I got an ache in my side and though, "oh good, my appendix, I can rest in the hospital"
Everything would be easier if one of us could quit our jobs, or if we had family nearby to help us, to just give us a goddamn break once a week. Or, now that we're really dreaming, if we were filthy rich and could hire tons of therapists to work with him around the clock. Someday, when I've energy, I'll write down for posterity a typical couple days in the life of a working parent of an autistic kid. I'm too tired right now.
Lately the kid refuses to go to sleep. Last night we put him in bed at 8pm and he kicked and yelled and sang loudly and talked loudly and jumped until 10:20. At which time, it was time for me to go to bed. This means we literally get NO BREAK from him. Not even a fucking hour of peace and quiet. Since I work from home 3 days a week, I'm immersed in him all the time anyway; I hear everything that goes on with the sitter, and my husband, even while working. Something has got to change. I'm going to lose my mind, I really am.
I'm afraid of this trip. I'm afraid that when I get four days away from the grueling, relentless, often-joyless grind of my daily life, I am not going to want to go back. Even before the diagnosis, it was a bit of a bummer to go back, because life was pretty hectic even then. But now...I don't know. I honestly think I'll be praying for the plane to crash. I do have those thoughts these days. Yesterday, I got an ache in my side and though, "oh good, my appendix, I can rest in the hospital"
Everything would be easier if one of us could quit our jobs, or if we had family nearby to help us, to just give us a goddamn break once a week. Or, now that we're really dreaming, if we were filthy rich and could hire tons of therapists to work with him around the clock. Someday, when I've energy, I'll write down for posterity a typical couple days in the life of a working parent of an autistic kid. I'm too tired right now.
Lately the kid refuses to go to sleep. Last night we put him in bed at 8pm and he kicked and yelled and sang loudly and talked loudly and jumped until 10:20. At which time, it was time for me to go to bed. This means we literally get NO BREAK from him. Not even a fucking hour of peace and quiet. Since I work from home 3 days a week, I'm immersed in him all the time anyway; I hear everything that goes on with the sitter, and my husband, even while working. Something has got to change. I'm going to lose my mind, I really am.
Thursday, March 8, 2012
The inconsequential friend
I so, so, so want to end my friendship with someone who I feel has been extremely unsupportive. She is supposed to be, by her own account, one of my very closest friends (and I, one of hers), and yet, I barely hear from her and she's unresponsive to texts and emails. This, despite my having shared the full extent of just how horrible I feel much of the time about this stuff with M. Oh, the times I talked for hours with her on the phone when she was miserable and going through a divorce and a tumultuous relationship. Yes, she's busy, but I'm usually busy, too, and I found time to talk her through it and listen for hours to her problems. But when I need her? Nowhere to be found. I've had issues with her in the past over this, and I've had just about enough of feeling hurt and disappointed by her. She's one of these people who loves swooping in with dramatic gestures-- offering a place to stay to someone who is down and out, for eg, or throwing an elaborate party-- but the unglamorous work of being a good friend, the checking in and the listening...not so much. I think in the past I would confront her on it, but it makes me feel weak and pathetic to do so, and she gets angry and confrontational and starts blaming me instead. She sees no significance to the fact that I've been to her house a 100 time and she' been to mine maybe....12? Doesn't believe that I call her more, reach out to her more...she doesn't see it. She thinks of herself as a good friend to those she is close to, and I think at one time she used to be, but I think those days are over. She's a shitty friend. And instead of raising a stink, I am going to casually write her off. I wish I could let go of the anger of it, though, and just do it without looking back.
Wednesday, March 7, 2012
The results
So, the recommendation is for three days/week of OT, two days a week of special instruction and ST every other week. I think he probably needs more ST, but I'm extremely happy with the other reccs. One of the OT sessions is going to be with his best buddy, M2, to teach them how to play well together, and the other might be at his daycare. So the third will be at home, then he'll already have the one we take him to privately. I feel very good about that. The sensory and gross motor stuff is huge for him.
I feel hopeful and excited about this plan for him--presuming all his therapists are good. The woman who is in charge of coordinating all the therapists seems very competent, and seemed to be recommending specific people. She characterized him several times in her report as a "sweet" and "bright" child. And he is, both of those things. My sensitive little sweetheart. She also said he's very into the music part of daycare, which only confirms his long-observed love of music at home. I hope he'll be able to get enough control of his motor function to make music himself some day, if that's what he wants. Or, he could be an afficianado. You don't have to make it to love it.
I feel hopeful and excited about this plan for him--presuming all his therapists are good. The woman who is in charge of coordinating all the therapists seems very competent, and seemed to be recommending specific people. She characterized him several times in her report as a "sweet" and "bright" child. And he is, both of those things. My sensitive little sweetheart. She also said he's very into the music part of daycare, which only confirms his long-observed love of music at home. I hope he'll be able to get enough control of his motor function to make music himself some day, if that's what he wants. Or, he could be an afficianado. You don't have to make it to love it.
IEP
Finally, after several sesions of evaluation, EI is going to tell us their plan for his treatment today. I feel a little nervous. Seems like every evaluation report brings more news that he's deficient in an area we hadn't considered. I would like him to get, at minimum, one/week ST, one/week OT and a special instructor to go to his afternoon daycare with him. We already pay for his 1/week private OT and his private psychologist, whom I consider the "team leader".
It's weird...some days I'll be humming along feeling all right, and then the truth of all this hits me again as if for the first time. I guess it's like any piece of bad news that changes your life forever-- relationship break-up, death. It's that experience of being able to forget about it for just a moment, then it all comes flooding back as if brand new.
It's weird...some days I'll be humming along feeling all right, and then the truth of all this hits me again as if for the first time. I guess it's like any piece of bad news that changes your life forever-- relationship break-up, death. It's that experience of being able to forget about it for just a moment, then it all comes flooding back as if brand new.
Tuesday, March 6, 2012
Weird coffee shop guy
There is this sort of lonely old guy who comes into the coffee shop where I work on the three days a week while M. is in his afternoon daycare. He's disheveled and sort of hard to understand, and shuffles in every day to get a coffee. Sometimes he gets a cup of ice and goes outside and throws it, piece by piece, into the street. What amazes me is how many of the coffee shop patrons take time out to talk to him. Most of the people at this cafe are young, professional types who are doing work, but they take 15-30 minutes to chat with this weird, sad dude. It restores my faith in people a little bit.
Rant.
Yesterday was a hard day, and in a moment of desparation, I Googled all sorts of alternative diagnoses, hoping I would find one that explained my son's symptoms better than autism. Didn't find it. But, in the course of Googling "autism overdiagnosis" I stumbled across a comment to an article in which a man basically accused parents of autistic kids of being lazy and wanting "the system" to care for their kids (through social services) rather than doing the work of parenting. Then more comments like this from people who agreed with him.
It boiled my blood to read this. All the parents of autistic kids I know work their asses off every second they spend with their kids, and much of the time they aren't with their kids, too. The endless research and wrangling with insurance companies and therapy agencies, the numerous therapy appointments, the evaluations, setting and re-setting goals. And then the biggest part--functioning as your child's full-time therapist during all his waking hours with you. By necessity, we pay much, much more attention to our kids than do parents of typical kids. At playgroups, other parents have the luxury of sitting and chatting with each other while their children play. We, on the other hand, have to be eternally vigilant in order to redirect our kid from over-stimulating, repetitive activities, or to encourage them to interact with typical peers. I could go on and on about how being a parent to an autistic kid is much more labor-intensive than is being a parent to a typical kid.
I wish there were some sort of show, like Wife Swap, where assholes like that guy could have the experience of parenting an autistic child for one week. Except I wouldn't trust my kid to get within 20 feet of a monster like that, who is angry about--what, exactly? His tax dollars going to public services that he doesn't benefit directly and immediately from? You live in a society, bud. Accept it.
Another attitude that irks me is one a friend w/o kids actually voiced to me. "I don't know how I feel about diagnosing kids." It's a convenient attitude to take if you don't have kids, or don't have a kid who is acting in really disturbing ways. If you do, you are desperate for someone to tell you what the hell is going on, and to try to figure out a way to help your kid at a time when his brain is still developing and there may be a chance of changing those neural pathways toward the good. Labels are helpful because they give you some sense of direction, and because insurance won't pay unless you have a label. So, yeah. I'm all about diagnosing kids. For me it's not an abstract or philosophical issue.
It boiled my blood to read this. All the parents of autistic kids I know work their asses off every second they spend with their kids, and much of the time they aren't with their kids, too. The endless research and wrangling with insurance companies and therapy agencies, the numerous therapy appointments, the evaluations, setting and re-setting goals. And then the biggest part--functioning as your child's full-time therapist during all his waking hours with you. By necessity, we pay much, much more attention to our kids than do parents of typical kids. At playgroups, other parents have the luxury of sitting and chatting with each other while their children play. We, on the other hand, have to be eternally vigilant in order to redirect our kid from over-stimulating, repetitive activities, or to encourage them to interact with typical peers. I could go on and on about how being a parent to an autistic kid is much more labor-intensive than is being a parent to a typical kid.
I wish there were some sort of show, like Wife Swap, where assholes like that guy could have the experience of parenting an autistic child for one week. Except I wouldn't trust my kid to get within 20 feet of a monster like that, who is angry about--what, exactly? His tax dollars going to public services that he doesn't benefit directly and immediately from? You live in a society, bud. Accept it.
Another attitude that irks me is one a friend w/o kids actually voiced to me. "I don't know how I feel about diagnosing kids." It's a convenient attitude to take if you don't have kids, or don't have a kid who is acting in really disturbing ways. If you do, you are desperate for someone to tell you what the hell is going on, and to try to figure out a way to help your kid at a time when his brain is still developing and there may be a chance of changing those neural pathways toward the good. Labels are helpful because they give you some sense of direction, and because insurance won't pay unless you have a label. So, yeah. I'm all about diagnosing kids. For me it's not an abstract or philosophical issue.
Support
An issue I've struggled with lately is not feeling supported by my friends.
I have many good, genuine friends whom I know care a great deal about me. And yet, there have been many times during this two months since the diagnosis that I've felt isolated, alone and unsupported by many of them. I think part of the problem is that I have always put a little too much emotional emphasis on friendships. Over the years, I have realized that my devotion to friends tends to be disproportionate to that of most other people. I view my closest friends as family members, truly. I go to great lengths to help friends during dark times. While I like this aspect about myself, I'm not trying to brag. I think there is probably some deep-seated personal need I fulfill by holding friendship so dearly, so it's not like I'm a martyr.
So, the struggle I have lately is in expecting friends to act toward me in the way I would act toward them, if I found out their child had autism. But this is not fair, or right. I have friends who have gone through some very tough times--parents dying, siblings with serious mental illness, divorce. Sometimes I was a good friend during those times, sometimes I wasn't as supportive as I should have been. Everyone is in a different place at different times. I try, very hard, to remember this. It's especially hard for me to grant this grace toward friends whom I was very supportive of at a hard time in their lives, and who I feel now are not supporting me as much. But I am trying, I am trying.
I think, too, that I have so much sadness and anger about all this happening that it spills over to feeling upset with my friends, and that's not really fair, either. This anger did, however, help me to deal with some very long-standing issues with my mom. Buried, festering stuff that was 25 years old and was preventing me from feeling fully that she actually cared about me. I do feel she does, now. Yesterday, when I had a down day, it was her that I called.
I have many good, genuine friends whom I know care a great deal about me. And yet, there have been many times during this two months since the diagnosis that I've felt isolated, alone and unsupported by many of them. I think part of the problem is that I have always put a little too much emotional emphasis on friendships. Over the years, I have realized that my devotion to friends tends to be disproportionate to that of most other people. I view my closest friends as family members, truly. I go to great lengths to help friends during dark times. While I like this aspect about myself, I'm not trying to brag. I think there is probably some deep-seated personal need I fulfill by holding friendship so dearly, so it's not like I'm a martyr.
So, the struggle I have lately is in expecting friends to act toward me in the way I would act toward them, if I found out their child had autism. But this is not fair, or right. I have friends who have gone through some very tough times--parents dying, siblings with serious mental illness, divorce. Sometimes I was a good friend during those times, sometimes I wasn't as supportive as I should have been. Everyone is in a different place at different times. I try, very hard, to remember this. It's especially hard for me to grant this grace toward friends whom I was very supportive of at a hard time in their lives, and who I feel now are not supporting me as much. But I am trying, I am trying.
I think, too, that I have so much sadness and anger about all this happening that it spills over to feeling upset with my friends, and that's not really fair, either. This anger did, however, help me to deal with some very long-standing issues with my mom. Buried, festering stuff that was 25 years old and was preventing me from feeling fully that she actually cared about me. I do feel she does, now. Yesterday, when I had a down day, it was her that I called.
The name of this blog
The name of this blog comes from a song on one of my son's CDs. He loves music, and Ella Jenkins in particular. At the end of one of her albums she sings this old gospel song with a man, sort of randomly for a kids' CD. And, although I am not Christian or religious, something about this song speaks to me and comforts me and strengthens me in a way I can't explain. Especially the part about loving everybody when you come out of the wilderness. Because that is what I want. To emerge from this present period, which feels like a living hell, an emotional wilderness, with a greater sense of compassion and connectedness to other humans, all of whom have struggles of their own. To turn this rage and hatred inside to pure love and empathy. That's my hope and desire, and I started this blog to help me with that.
Here are the lyrics:
Tell me how did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
Leaning, leaning on the Lord.
Well I looked at my hands and my hands looked new
Looked at my feet and they did too
Started to walk--I had a brand new walk
Started to talk--I had a brand new talk
Started to sing--I had a brand new song
And everybody wondered just what was wrong
Tell me how did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
Leaning, leaning on the Lord.
Well my soul was new when I came out the wilderness.
My heart was too when I came out the wilderness.
Well I loved everybody when I came out the wilderness.
Leaning, leaning on the Lord
Here are the lyrics:
Tell me how did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
Leaning, leaning on the Lord.
Well I looked at my hands and my hands looked new
Looked at my feet and they did too
Started to walk--I had a brand new walk
Started to talk--I had a brand new talk
Started to sing--I had a brand new song
And everybody wondered just what was wrong
Tell me how did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
How did you feel when you came out the wilderness?
Leaning, leaning on the Lord.
Well my soul was new when I came out the wilderness.
My heart was too when I came out the wilderness.
Well I loved everybody when I came out the wilderness.
Leaning, leaning on the Lord
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