If there are six degrees of separation between you and a person with an austim spectral disorder (ASD) than you need to watch Temple Grandin.
I watched the movie with the kids' bioaunt who is schlepping at our house during the busy season for us window cleaners. We laughed, giggled, cried, got frustrated for Temple and haven't stopped talking about it. The first ten minutes of the movie I was riveted, it was like watching AB! So amazing.
Things I've taken from the movie as a mom of ASD kiddos:
1. "different, not less" a quote from Temple and her mom. I believe this about my children and exude this philosophy but I don't verbalize it publicly which is just the same as saying out loud, "different AND less". I need to be even more vocal about it.
2. Never stop telling your kids the truth, never stop teaching, never stop being honest and fair, never stop advocating, never take second best. When you think your child isn't soaking it up, they are. And one day, your child may come back around and repay you by acknowledging your efforts or even better, pay it forward. But don't hang your hat on that outcome. It's the exception to the rule. Keep plugging away because it's what is right as a parent of a challenged child.
3. Even though Sissy has PDD-NOS on her charts, she's still VERY different from AB and Temple Grandin's issues,so much so that I am still ready to fight and say that she's not PDD-NOS after all. She's just never had the same concerns as AB, ever. Even AB doesn't match up to Temple Grandin's autism. He does not have that level of intellect in addition, when I score him on psychometric evals, he always scores as HFA (high functioning autism) but the docs list him as Asperger's because he's so verbal. Why is he so verbal? Because of the F-G syndrome. See, it's puzzling. There are too many variables to make a succinct Dx and then make therapy plans based on said Dx.
That said, it's time the mental health community began to acknowledge that all our different levels of Autism just need to be thrown out. It's a spectral disorder, just like FASD. ASD should be the final Dx for EVERYONE on the spectrum. In fact, the kids' pdoc said this what is coming down the road in the next few years for the DSM.
3. Most importantly, how does ASD connect to RAD? Ah... the meat of the blog. Yes, eventually it all comes back to Sissy, doesn't it? Story of my life, of OUR life.
In the 50's, when Temple was first diagnosed, the psychiatrist told her mother that the autism was actually infantile schizophrenia and that it was thought that it was early developmental bonding issues between the infant and the mother. Of course, Temple's mom was on that like white on rice. She hadn't been disconnected from Temple, her daughter simply wasn't connecting back in like kind. Temple didn't hug her mother until she was an adult working on her masters. RAD. RAD! my friends.
Here's a little nugget that I uncovered a few weeks back when I was going through records to take to the pdoc for AB. The initial psychology report I did, including the 500 insane pages of pyschometric evaluations (ok, more like 45 but felt like 500) was a RADQ. I remember being annoyed. Sissy was the RAD, not AB. In that instant, as I poured over the file of documents I have for AB, I recalled the whole scenario.
I did the RADQ for AB, he scored 8 out of 50, not diagnosable for RAD. I asked the psychologist about it at the review and the good doctor told me that it's standard procedure to check developmentally delayed (DD) kids for RAD, that many DD score as RAD because their challenges make it difficult for them to understand social constructs, human relationship and may have sensory issues that prevent them from being able to be touched. Of course, AB hasn't got those concerns. He's got attachment in spades, maybe my most attached kiddo, even over WG (who has always had some anxiety issues when I'm not around that started at birth - but I can manage it, talk her through it and it's never been an impediment to her well being or our relationship.)
So as I watched the movie, I was astonished. Of course Temple would have been perceived as a RAD, even though she wasn't dissociated from her mother. She admits herself as an adult in the movie that she doesn't understand how people relate and that touch is painful and that she can't be fixed.
Enter Sissy's recent confounding Dx of PDD-NOS (currently presumed to be the highest functioning form of ASDs) and the fact that whenever she is discharged from RTC we are on our butts for mental health resources because she no longer qualifies for those services and I had an AHA! moment. Perhaps a portion of Sissy's RAD is her ASD. To quote the staff from the psych floor at her last stay in December, "She's a tough case. We can't figure out where the RAD stops and the PDD-NOS begins."
So why is Sissy so tough? Because with or without an ASD issue, she's still a class 5 RAD. Seeing her for the first time today after three weeks of hospitalization, we had minimal touch, she rarely gave me her eyes, we sat at opposite sides of the therapy room, isolating ourselves from each other, she didn't notice my drastically different haircut (I've cropped it!) and she was aloof and distant emotionally, an altogether flat affect regarding me.
Of course, that means we have a snafu when she discharges. With no more access to mental health resources, she'll come home unsupported and I'll still have a RADish with dual diagnoses. Where does RAD stop and DD begin? Does anyone know? I don't think that's a quantifiable answer. Can Sissy be healed of her RAD? Again, with DD confounding her issues, the answer has to be, No. not entirely.
Right now the plan is to get in with LIPT and hopefully get both AB and Sissy on a DD waiver which is simply a different funnel of resources that are billed to medicaid. Think of Plinko on "The Price is Right" You drop a coin from the top and it trickles down to the bottom and to whatever prize category it lands in but the catch is all the pegs in the middle of the board bounce the coin around helter skelter. This is how resources for challenged kids work. There are lots of funnels for resources for every category of need but you have to drop a bunch of Plinko coins down the medicaid shoot before you land in the prize category you're searching for.
How do you avoid this nonsense? You can't. And even as I type this I know it's still a crap shoot as to whether or not LIPT will benefit Sissy's case or if we can get both AB and Sissy to qualify for the DD waiver. The one thing I HAVE learned in all of this is that when it comes to waivers, you aren't going to have your child's needs adequately served until you have the right Dx. And getting the right Dx often takes years because it takes that long for your child's needs to fully emerge as they progress (or don't) through development and puberty. It's all easy to say but not easy to live with, especially if you have a class 5 raging RADish to contend with. We want answers NOW. TODAY. INSTANTLY. With DD, MH, RAD and ASDs, there's no "instant".
I am the mother of a class 5 RAD with dual diagnoses that will never be healed. I can wear this hat with confidence for as long as Sissy can be in our home without raging. If only all the world of challenged people was made up of highly motivated and confident persons like Temple Grandin.
Wednesday, March 30, 2011
Monday, March 28, 2011
My Aspie-sized life
"Mom? Mom. Mom I was ..." This is how AB starts every conversation, usually from another room and in a quick, rapid-fire speech that is either too loud or too quiet and includes a speech impediment to boot. Once he finally makes it to the room of the house that I'm in, he will be wrapping up whatever thought he was attempting to convey, assuming I've not only heard every word but UNDERSTOOD every word. And all I'll get is the tail end of it, "... so can I Mom? Mom? MOM. MOM!!!!" Of course, none of that is said without *bump bump bump bump bump* of his belly or legs against whatever furniture or obstruction he can bump and *swing, swing, swing, swing snap* of his arms past his warm-up pants finished off with a touch to the top of his head and a jerk to the side like he's trying to crack his neck.
"Mom? Can I?"
And I'll sigh and look him in the eye and say, "Son. I have NO idea what you are talking about." Usually, that's the truth but sometimes it's not. Sometimes I've caught wind of the whole bit but I refuse to be spoken to from across rooms. I'm not his maid or his servant. And furthermore, such social cues are oddities for people with ASDs to begin with so the last thing I want to do is reinforce these behaviors by allowing them. "Stand still. Look at me. Please start from the beginning, slowly."
Half the time he'll get agitated or angry and say something like, "ugh! I said it already!" or the one that makes me snicker, "you heard me, I know you did!" especially when I DID indeed hear him. That's not the point. The point is that he needs to learn how to communicate properly.
The other half of the time he is pacing, swinging, mumbling, looking one hundred other directions, scratching his head, talking quickly and trying to ask for what he wants. The best part? If I agree to what he wants, he skips and says very quickly, a staccato beat, "YAY!" If it's something he thinks is REALLY awesome, he hugs and kisses me.
I love it when he hugs and kisses me. *big, warm grin*
His YAYs are so catchy that I find myself doing them. Most recently I was at the pharmacy (ok, back up. when am I NOT at the pharmacy getting meds for my kids? It's a joke now. The pharmacists, ALL of the staff at CVS, know me by first name. geez.)
Back to the story. Medicaid likes to block us out from refills until we only have 3 pills left but sometimes that means I'm making five trips a week to the pharmacy (thus you know the reason why they all know me so well.) Recently, in desperation, I showed up with a bunch of nearly empty vials in hand and said, "please see if medicaid will process all of these ..." and the pharmacist finished my sentence.
"... So you only have to come back once?"
"uh. yeah." i rolled my eyes. She processed it in the computer and assured me that they all went through. "YAY!" I shouted with glee and hopped,just like AB. She looked at me funny. "um. yeah. Ok. sorry. That was, uh, very autistic of me, wasn't it?" She laughed. I love that my pharmacists know that I'm the weird mom with the ASD kids (among other issues.)
Every morning AB dons his AFOs. I think we're on pair five? It's time to fit him for another pair, his toes are hanging off the ends. I used to let AB put his AFOs on by himself but they became a bone of contention for him so now I help. I help because I use it as leverage. "AB, if you put your dirty clothes in the laundry, I will put on your AFOs for you." I do something like this every morning. It's not because I WON'T do it for him (he knows I'm going to help him either way.) It's because he needs a little motivation. He's not a sticker-chart kid. Could give a flying flip. But dangle a little carrot that he can easily snatch up in two minutes worth of minimal effort and VOILA! I have complete compliance. And when it comes to those dang AFOs, I NEED compliance. He wears them for toe-walking but at this point, it's for prevention and not correction. No. AB will toe-walk regardless, it's a sensory issue. What I'm trying to prevent is arthritis and wear and tear on his hip, back and knee joints.
Today, AB was Captain Sensitive. This is what I call it when no one can breathe around him. Or move. Or wiggle. Or giggle. Or sing or talk or bump. Or anything. "AB. That's not the rule." is what I say first. For instance, WG has little legs and will push on the back of the middle bench seat in the van so she can scoot her bootie all the way into the seat. AB screams that she's kicking the seat. Literally, screams it and often cries about it. "AB. That's not the van rule. WG is getting into her seat." *more screaming and crying from AB* "No son. The rule is WG can't kick it while the van is driving."
But when it's Captain Sensitive day, forget it. Rules or no rules, he's gonna be a grumpy Gus. How do we fix Captain Sensitive? input, input, input. Today, adaptive swim fixed it and when he emerged from the pool he was Captain Pizza Man. Literally, he got out of the pool and walked into the waiting towel I'd held out for him with, "Momdowehavepepperonipizzaohwaitwedoit'sinthefreezerthethreeminuteonemomcanI?"
"yes."
"yay" kiss, hug.
*sigh*
Other days he's "Captain First". He has to be first. Period. Out of the van first, into a building first, onto the next lane in the grocery store first, into an elevator first. First, first, first. It used to drive me nuts. I used to try to curb this behavior. Now I only correct if he's not holding a door open for the person following him or if he pushes another person out of his way (which he'll deny, btw.) I'm not sure why he's Captain First. I just know that if I don't let him be first, it's going to be bad. Bad as in knock-down-drag-out-require-a-full-body-restraint-in-public-and-the-store-manager-is-going-to-come-and-check-on-us. That kind of bad.
We were going to the hospital recently (ok, back up. we're always "going to the hospital" for some thing or another - it's a fact of life for our family so we're over it now). Anyway, AB knew his way through the maze of corridors to get to the geneticist's office. WG was annoyed because he pushed past her and was first, again, his hand trailing the wall because duh, he has to be touching something. WG said, "ugh. mom. why does he always get to be first?"
"sorry kiddo. It's his thing."
"But it's not fair."
"yup. you're right. but go ahead and try to stop him."
"mom. you know I can't. He'll get mad."
"yup. he's Captain First."
She giggled and shrugged her shoulders then sighed, "yeah, that's just AB alright. Captain first."
Other "input" we use or have used:
(by "input" I mean sensory input - AB needs lots of stimulation and deep input)
1. desensitization brushing
2. swinging
3. vibrator chair
4. compressions
5. hippotherapy
6. marbles in putty
7. rice tray
8. trampoline
9. swimming
10. rubbing his head
11. weighted vest
Many people assume that persons with Aspergers have a higher IQ. This is true for some but isn't true in AB's case. It makes me frustrated that with all the media about ASDs, there are still so many stereotypes. I'll tell people that AB has Aspergers and they'll begin telling me all about the high-paying jobs he'll be able to do because he's so smart.
AB's IQ is marginally below average. At one point we thought it was just above MR (mental retardation) but a later IQ showed a composite in the 90s. AB is a puzzle because he is actually symptomatic for his ASD. His true Dx is the F-G syndrome, a sex-linked genetic abnormality, in addition to his chromosome 19 duplications. AB's development is altered, including severe (but currently mild thanks to medications) GI issues. Of course, right now we're in the wait-and-see game about his rapidly advancing, early-onset puberty and whether or not he'll end up with seizures too. He has lesions on his chest that can only be seen with a black light, he has very definite mood swings and he has learning impairments. AB's future will likely be group home or assisted living or home with mom and dad helping us out with the business in some capacity.
I don't get to talk about the challenges we have with AB because Sissy's challenges overshadow his. Suffice it to say, all on his own, AB can be a tough one but honestly, I don't mind. I'd raise more like him if I thought we could adopt again. I wish for all the world that Sissy's issues were more like AB's. Dual diagnoses? No problem. I'm on that.
But RAD?
Sinks me in a skinny minute.
Here's to my totally awesome son who,at the moment is doing just fine. If you have any questions or concerns about your own ASD kids, ask away! I love to help and share what has worked for us in the past. And now, after a very long time, I'm finally going to watch the movie about Temple Grandin.
"Mom? Can I?"
And I'll sigh and look him in the eye and say, "Son. I have NO idea what you are talking about." Usually, that's the truth but sometimes it's not. Sometimes I've caught wind of the whole bit but I refuse to be spoken to from across rooms. I'm not his maid or his servant. And furthermore, such social cues are oddities for people with ASDs to begin with so the last thing I want to do is reinforce these behaviors by allowing them. "Stand still. Look at me. Please start from the beginning, slowly."
Half the time he'll get agitated or angry and say something like, "ugh! I said it already!" or the one that makes me snicker, "you heard me, I know you did!" especially when I DID indeed hear him. That's not the point. The point is that he needs to learn how to communicate properly.
The other half of the time he is pacing, swinging, mumbling, looking one hundred other directions, scratching his head, talking quickly and trying to ask for what he wants. The best part? If I agree to what he wants, he skips and says very quickly, a staccato beat, "YAY!" If it's something he thinks is REALLY awesome, he hugs and kisses me.
I love it when he hugs and kisses me. *big, warm grin*
His YAYs are so catchy that I find myself doing them. Most recently I was at the pharmacy (ok, back up. when am I NOT at the pharmacy getting meds for my kids? It's a joke now. The pharmacists, ALL of the staff at CVS, know me by first name. geez.)
Back to the story. Medicaid likes to block us out from refills until we only have 3 pills left but sometimes that means I'm making five trips a week to the pharmacy (thus you know the reason why they all know me so well.) Recently, in desperation, I showed up with a bunch of nearly empty vials in hand and said, "please see if medicaid will process all of these ..." and the pharmacist finished my sentence.
"... So you only have to come back once?"
"uh. yeah." i rolled my eyes. She processed it in the computer and assured me that they all went through. "YAY!" I shouted with glee and hopped,just like AB. She looked at me funny. "um. yeah. Ok. sorry. That was, uh, very autistic of me, wasn't it?" She laughed. I love that my pharmacists know that I'm the weird mom with the ASD kids (among other issues.)
Every morning AB dons his AFOs. I think we're on pair five? It's time to fit him for another pair, his toes are hanging off the ends. I used to let AB put his AFOs on by himself but they became a bone of contention for him so now I help. I help because I use it as leverage. "AB, if you put your dirty clothes in the laundry, I will put on your AFOs for you." I do something like this every morning. It's not because I WON'T do it for him (he knows I'm going to help him either way.) It's because he needs a little motivation. He's not a sticker-chart kid. Could give a flying flip. But dangle a little carrot that he can easily snatch up in two minutes worth of minimal effort and VOILA! I have complete compliance. And when it comes to those dang AFOs, I NEED compliance. He wears them for toe-walking but at this point, it's for prevention and not correction. No. AB will toe-walk regardless, it's a sensory issue. What I'm trying to prevent is arthritis and wear and tear on his hip, back and knee joints.
Today, AB was Captain Sensitive. This is what I call it when no one can breathe around him. Or move. Or wiggle. Or giggle. Or sing or talk or bump. Or anything. "AB. That's not the rule." is what I say first. For instance, WG has little legs and will push on the back of the middle bench seat in the van so she can scoot her bootie all the way into the seat. AB screams that she's kicking the seat. Literally, screams it and often cries about it. "AB. That's not the van rule. WG is getting into her seat." *more screaming and crying from AB* "No son. The rule is WG can't kick it while the van is driving."
But when it's Captain Sensitive day, forget it. Rules or no rules, he's gonna be a grumpy Gus. How do we fix Captain Sensitive? input, input, input. Today, adaptive swim fixed it and when he emerged from the pool he was Captain Pizza Man. Literally, he got out of the pool and walked into the waiting towel I'd held out for him with, "Momdowehavepepperonipizzaohwaitwedoit'sinthefreezerthethreeminuteonemomcanI?"
"yes."
"yay" kiss, hug.
*sigh*
Other days he's "Captain First". He has to be first. Period. Out of the van first, into a building first, onto the next lane in the grocery store first, into an elevator first. First, first, first. It used to drive me nuts. I used to try to curb this behavior. Now I only correct if he's not holding a door open for the person following him or if he pushes another person out of his way (which he'll deny, btw.) I'm not sure why he's Captain First. I just know that if I don't let him be first, it's going to be bad. Bad as in knock-down-drag-out-require-a-full-body-restraint-in-public-and-the-store-manager-is-going-to-come-and-check-on-us. That kind of bad.
We were going to the hospital recently (ok, back up. we're always "going to the hospital" for some thing or another - it's a fact of life for our family so we're over it now). Anyway, AB knew his way through the maze of corridors to get to the geneticist's office. WG was annoyed because he pushed past her and was first, again, his hand trailing the wall because duh, he has to be touching something. WG said, "ugh. mom. why does he always get to be first?"
"sorry kiddo. It's his thing."
"But it's not fair."
"yup. you're right. but go ahead and try to stop him."
"mom. you know I can't. He'll get mad."
"yup. he's Captain First."
She giggled and shrugged her shoulders then sighed, "yeah, that's just AB alright. Captain first."
Other "input" we use or have used:
(by "input" I mean sensory input - AB needs lots of stimulation and deep input)
1. desensitization brushing
2. swinging
3. vibrator chair
4. compressions
5. hippotherapy
6. marbles in putty
7. rice tray
8. trampoline
9. swimming
10. rubbing his head
11. weighted vest
Many people assume that persons with Aspergers have a higher IQ. This is true for some but isn't true in AB's case. It makes me frustrated that with all the media about ASDs, there are still so many stereotypes. I'll tell people that AB has Aspergers and they'll begin telling me all about the high-paying jobs he'll be able to do because he's so smart.
AB's IQ is marginally below average. At one point we thought it was just above MR (mental retardation) but a later IQ showed a composite in the 90s. AB is a puzzle because he is actually symptomatic for his ASD. His true Dx is the F-G syndrome, a sex-linked genetic abnormality, in addition to his chromosome 19 duplications. AB's development is altered, including severe (but currently mild thanks to medications) GI issues. Of course, right now we're in the wait-and-see game about his rapidly advancing, early-onset puberty and whether or not he'll end up with seizures too. He has lesions on his chest that can only be seen with a black light, he has very definite mood swings and he has learning impairments. AB's future will likely be group home or assisted living or home with mom and dad helping us out with the business in some capacity.
I don't get to talk about the challenges we have with AB because Sissy's challenges overshadow his. Suffice it to say, all on his own, AB can be a tough one but honestly, I don't mind. I'd raise more like him if I thought we could adopt again. I wish for all the world that Sissy's issues were more like AB's. Dual diagnoses? No problem. I'm on that.
But RAD?
Sinks me in a skinny minute.
Here's to my totally awesome son who,at the moment is doing just fine. If you have any questions or concerns about your own ASD kids, ask away! I love to help and share what has worked for us in the past. And now, after a very long time, I'm finally going to watch the movie about Temple Grandin.
Saturday, March 26, 2011
love is ...
I have stewed on this. Wilted cabbage simmering in a pot with peeled tomatoes. That kind of stewing. Smells a little funky, tastes a little odd, nourishes somewhat, gives you the trots in 2 hours flat. That kind of stewing.
In my head it has rumbled and bumbled, rattled and battled, shimmy-shaked and baked.
Just what IS love anyway?
Tevye and Golde have some thoughts:
The Bible has some words:
1 Corinthians 13: 4-8a (NIV) 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails.
Karyn Purvis weighs in on a sister of love:
"Compassion doesn't have a shelf life. Our kids from the hard places always need it."
Music, TV, Movies and books have LOTS of ideas about love. I think they'd all be wrong with the exception of country music because we all know country music is ALWAYS on the money about love:
but maybe you prefer the Beatles' version of love:
Then there's the OTHER side of love. The unconditional side. The until-death-we-do-part, in-sickness, for-worse part about love. Some christian theologians refer to Agape love. There's the love languages. (mine is "acts of service" btw) And of course, there's tough love
Regarding Sissy and perhaps other RAD kids (but I won't generalize because I have NO clue how it goes for other people in their love journey when parenting challenged kids), finding how to love in this capacity isn't written or sung or expressed anywhere. No, to love a child that refuses to be loved, you have to write your own book on the matter.
Do I love her?
I weep when I think of what would have become of her if we'd chosen not to adopt her.
I know what she likes, sometimes better than she does.
I can tell by the way she breathes if she's not feeling well.
I know the moment I see her if she's happy.
I gave her favorite store my email address so they could send me spam about their sales.
I have picked up her room for her, without even mentioning to her that I've done so, just because I want it to be a quiet, comfortable place for her.
I have spent the equivalent of four straight months, 24/7, in therapy sessions with her.
I never let her run out of her meds.
I get angry when the school doesn't seem to understand that YES, she IS indeed learning challenged, even if it is only an emotional impediment to her learning ability. It's still a challenge for her.
I've read the books she likes to read, just so I know what she's reading and can have something to talk about with her.
I've read stacks of books about parenting so I can help her.
I've spent hundreds of sleepless nights worrying about her.
I've spent hundreds of nights dreaming about trying to help her.
I've spent hundreds of nights waking up from nightmares about her.
I've spent hundreds of nights crying myself to sleep because I haven't known how to help her.
I've spent hundreds of nights crying myself to sleep because I have felt like I've failed her.
I've spent hundreds of days crying and talking and trying to convince her how much I love her.
I've crocheted sweaters for her, mended torn stuffed doggie ears for her, hand-stitched worn blankets for her, replaced lost items, glued broken toys, spent hours searching for the "perfect" gifts, baked beautiful cakes, made her favorite foods, stocked the fridge with her favorite snacks, held compresses on her neck while she's vomited, washed out favorite blankets at 3 am that were covered in vomit because she couldn't sleep without them, driven back to school with lunch boxes and book bags because she'd forgotten them, brushed her hair, combed her hair, braided her hair, washed her hair, cut her hair ...
I've gotten her emergency medical attention when she was suicidal and stood my ground with hound-dogging professionals to make sure she'd gotten a bed on the psych floor. I've gone to the ER when she was suicidal and been irate when we were turned away.
I can list the meds she takes without thinking, even though it changes almost monthly.
I hold her hand when she gets her lab work done to make sure her liver enzymes are within normal range despite all the meds she takes. I gently reassure her that the weight she's gained with the meds is worth it because the meds help her mind be quiet.
I've made her wash two more times when she stank so bad you could smell her from four feet away and she raged and faked us out and pretended and still stank. I made her wash even though she raged. Occasionally I put on a swimsuit and got in with her.
She has wanted for nothing. I have provided her with everything she needs and many things she has wanted.
There isn't a stone I've not turned over trying to get her the help she needs.
After all she's done to herself and to her family, I still love her. I still have compassion for her. I still grieve for her. I'll still fight for her. I'll still want her home. And actually, after all this pondering, it has surprised me that I've come to this conclusion. I thought I had nothing left for her. I was wrong.
I'm also not wrong when I realize I just can't do this anymore if it's going to continue on the same course for destruction.
And that is love too.
It's no easy thing to admit as a parent that sometimes love is being able to say,
"no more."
And in saying so, will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?
props to my oldest sis who gave me this link eons ago and as it turns out, likes the country life too
In my head it has rumbled and bumbled, rattled and battled, shimmy-shaked and baked.
Just what IS love anyway?
Tevye and Golde have some thoughts:
The Bible has some words:
1 Corinthians 13: 4-8a (NIV) 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails.
Karyn Purvis weighs in on a sister of love:
"Compassion doesn't have a shelf life. Our kids from the hard places always need it."
Music, TV, Movies and books have LOTS of ideas about love. I think they'd all be wrong with the exception of country music because we all know country music is ALWAYS on the money about love:
but maybe you prefer the Beatles' version of love:
Then there's the OTHER side of love. The unconditional side. The until-death-we-do-part, in-sickness, for-worse part about love. Some christian theologians refer to Agape love. There's the love languages. (mine is "acts of service" btw) And of course, there's tough love
Regarding Sissy and perhaps other RAD kids (but I won't generalize because I have NO clue how it goes for other people in their love journey when parenting challenged kids), finding how to love in this capacity isn't written or sung or expressed anywhere. No, to love a child that refuses to be loved, you have to write your own book on the matter.
Do I love her?
I weep when I think of what would have become of her if we'd chosen not to adopt her.
I know what she likes, sometimes better than she does.
I can tell by the way she breathes if she's not feeling well.
I know the moment I see her if she's happy.
I gave her favorite store my email address so they could send me spam about their sales.
I have picked up her room for her, without even mentioning to her that I've done so, just because I want it to be a quiet, comfortable place for her.
I have spent the equivalent of four straight months, 24/7, in therapy sessions with her.
I never let her run out of her meds.
I get angry when the school doesn't seem to understand that YES, she IS indeed learning challenged, even if it is only an emotional impediment to her learning ability. It's still a challenge for her.
I've read the books she likes to read, just so I know what she's reading and can have something to talk about with her.
I've read stacks of books about parenting so I can help her.
I've spent hundreds of sleepless nights worrying about her.
I've spent hundreds of nights dreaming about trying to help her.
I've spent hundreds of nights waking up from nightmares about her.
I've spent hundreds of nights crying myself to sleep because I haven't known how to help her.
I've spent hundreds of nights crying myself to sleep because I have felt like I've failed her.
I've spent hundreds of days crying and talking and trying to convince her how much I love her.
I've crocheted sweaters for her, mended torn stuffed doggie ears for her, hand-stitched worn blankets for her, replaced lost items, glued broken toys, spent hours searching for the "perfect" gifts, baked beautiful cakes, made her favorite foods, stocked the fridge with her favorite snacks, held compresses on her neck while she's vomited, washed out favorite blankets at 3 am that were covered in vomit because she couldn't sleep without them, driven back to school with lunch boxes and book bags because she'd forgotten them, brushed her hair, combed her hair, braided her hair, washed her hair, cut her hair ...
I've gotten her emergency medical attention when she was suicidal and stood my ground with hound-dogging professionals to make sure she'd gotten a bed on the psych floor. I've gone to the ER when she was suicidal and been irate when we were turned away.
I can list the meds she takes without thinking, even though it changes almost monthly.
I hold her hand when she gets her lab work done to make sure her liver enzymes are within normal range despite all the meds she takes. I gently reassure her that the weight she's gained with the meds is worth it because the meds help her mind be quiet.
I've made her wash two more times when she stank so bad you could smell her from four feet away and she raged and faked us out and pretended and still stank. I made her wash even though she raged. Occasionally I put on a swimsuit and got in with her.
She has wanted for nothing. I have provided her with everything she needs and many things she has wanted.
There isn't a stone I've not turned over trying to get her the help she needs.
After all she's done to herself and to her family, I still love her. I still have compassion for her. I still grieve for her. I'll still fight for her. I'll still want her home. And actually, after all this pondering, it has surprised me that I've come to this conclusion. I thought I had nothing left for her. I was wrong.
I'm also not wrong when I realize I just can't do this anymore if it's going to continue on the same course for destruction.
And that is love too.
It's no easy thing to admit as a parent that sometimes love is being able to say,
And in saying so, will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?
props to my oldest sis who gave me this link eons ago and as it turns out, likes the country life too
Thursday, March 24, 2011
Stars
My mom and sis-in-law live in the country. I like it there. A lot. I'd move in a skinny minute if we didn't need to have access to resources like pdocs and therapies and such. I've always been a country gal at heart which is funny because my sisters prefer the city life.
Not me. Give me green. OK, not pine pollen green, but anything green and living and photosynthesizing. Give it to me. And give me big open spaces and wide vistas. And sky! Lawdy, I need me some SKY! Huge fluffy clouds or evil, brooding storm clouds, I don't care. Just give me sky that meets the earth in a 180 degree panoramic view and I'm happy as a clam. Just slap-my-fanny-and-call-me-nanny happy. LOVE it.
The best part about sky? Stars.
Oh.my.stars. In the country there are stars. The kind of stars where you go outside and your eyes adjust to the night light and you look up into the black of the night and at first only a few stars pop out and twinkle. Then you breathe deep and let out a slow exhale all while gazing at the sky and five hundred more stars appear and they have depth and dimension, color and variation. If you stay out there long enough you'll hear some bats and an owl, see the glowing eyes of some possums and you'll see even more stars. So many stars that the sky seems bright, heavy and almost crushing because it is so full of STARS!
And if you like to do some existential thinking (which i do), you can look up at those stars while you get a little goose-pimply chill from the cool night breeze and maybe an absentminded slap on the left arm to whap the thirsty mosquito that has considered you as his dinner and you can ponder life. Hundreds of thousands of solar systems in hundreds of thousands of galaxies in hundreds of thousands of universes all hanging among those stars. And you're sitting on a stoop, very much alive, very much surrounded by other living things so much so that the air is heavy with the scent of green and life and you think there just HAS to be more to this life than this stoop in the country. Those stars. Just look at all those stars!
Then a dog will bark you out of your reverie and someone will come looking for you because they need something and you'll snap back to reality, shuffle your aching, stiff bum off the stairs and go back in, in to life.
Sissy being gone is like sitting on that stoop in the country, gazing at the stars and thinking grandiose, existential thoughts. I feel so huge and so tiny, so capable and strong yet so frail, so full of life and also so empty. I feel like everything is out there for the taking, nothing is unavailable to me, the world is my oyster and I can accomplish anything. I feel so alive, so energized, so safe, so free.
Eventually, I'll have to go back inside.
I wish it was possible to have this vitality with Sissy as part of the picture. I wish she wanted that reality for herself. For now, I'll just enjoy the stars.
my favorite poem - which I have also sung with my college choir in what now seems like another lifetime. Ever since, I've not been able to read this poem without hearing the tune we sang it to. eight part a capella chamber music. amazing.
Choose Something Like a Star
by Robert Frost - 1947
O Star (the fairest one in sight),
We grant your loftiness the right
To some obscurity of cloud --
It will not do to say of night,
Since dark is what brings out your light.
Some mystery becomes the proud.
But to be wholly taciturn
In your reserve is not allowed.
Say something to us we can learn
By heart and when alone repeat.
Say something! And it says "I burn."
But say with what degree of heat.
Talk Fahrenheit, talk Centigrade.
Use language we can comprehend.
Tell us what elements you blend.
It gives us strangely little aid,
But does tell something in the end.
And steadfast as Keats' Eremite,
Not even stooping from its sphere,
It asks a little of us here.
It asks of us a certain height,
So when at times the mob is swayed
To carry praise or blame too far,
We may choose something like a star
To stay our minds on and be staid.
Not me. Give me green. OK, not pine pollen green, but anything green and living and photosynthesizing. Give it to me. And give me big open spaces and wide vistas. And sky! Lawdy, I need me some SKY! Huge fluffy clouds or evil, brooding storm clouds, I don't care. Just give me sky that meets the earth in a 180 degree panoramic view and I'm happy as a clam. Just slap-my-fanny-and-call-me-nanny happy. LOVE it.
The best part about sky? Stars.
Oh.my.stars. In the country there are stars. The kind of stars where you go outside and your eyes adjust to the night light and you look up into the black of the night and at first only a few stars pop out and twinkle. Then you breathe deep and let out a slow exhale all while gazing at the sky and five hundred more stars appear and they have depth and dimension, color and variation. If you stay out there long enough you'll hear some bats and an owl, see the glowing eyes of some possums and you'll see even more stars. So many stars that the sky seems bright, heavy and almost crushing because it is so full of STARS!
And if you like to do some existential thinking (which i do), you can look up at those stars while you get a little goose-pimply chill from the cool night breeze and maybe an absentminded slap on the left arm to whap the thirsty mosquito that has considered you as his dinner and you can ponder life. Hundreds of thousands of solar systems in hundreds of thousands of galaxies in hundreds of thousands of universes all hanging among those stars. And you're sitting on a stoop, very much alive, very much surrounded by other living things so much so that the air is heavy with the scent of green and life and you think there just HAS to be more to this life than this stoop in the country. Those stars. Just look at all those stars!
Then a dog will bark you out of your reverie and someone will come looking for you because they need something and you'll snap back to reality, shuffle your aching, stiff bum off the stairs and go back in, in to life.
Sissy being gone is like sitting on that stoop in the country, gazing at the stars and thinking grandiose, existential thoughts. I feel so huge and so tiny, so capable and strong yet so frail, so full of life and also so empty. I feel like everything is out there for the taking, nothing is unavailable to me, the world is my oyster and I can accomplish anything. I feel so alive, so energized, so safe, so free.
Eventually, I'll have to go back inside.
I wish it was possible to have this vitality with Sissy as part of the picture. I wish she wanted that reality for herself. For now, I'll just enjoy the stars.
my favorite poem - which I have also sung with my college choir in what now seems like another lifetime. Ever since, I've not been able to read this poem without hearing the tune we sang it to. eight part a capella chamber music. amazing.
Choose Something Like a Star
by Robert Frost - 1947
O Star (the fairest one in sight),
We grant your loftiness the right
To some obscurity of cloud --
It will not do to say of night,
Since dark is what brings out your light.
Some mystery becomes the proud.
But to be wholly taciturn
In your reserve is not allowed.
Say something to us we can learn
By heart and when alone repeat.
Say something! And it says "I burn."
But say with what degree of heat.
Talk Fahrenheit, talk Centigrade.
Use language we can comprehend.
Tell us what elements you blend.
It gives us strangely little aid,
But does tell something in the end.
And steadfast as Keats' Eremite,
Not even stooping from its sphere,
It asks a little of us here.
It asks of us a certain height,
So when at times the mob is swayed
To carry praise or blame too far,
We may choose something like a star
To stay our minds on and be staid.
Wednesday, March 23, 2011
Stealing Every Drop from Everyone
AB bounced back to baseline with a snap of the fingers, or in his case, swing,snap, flap, hop, skip, table bump. Or something along those lines. He had wanted a mohawk for some time so he grew out his hair and Sunday night I cut it for him and by Monday morning he was angry and practically in tears fretting about it and wanting it buzzed off. I asked him to give it a day. By Monday night I was buying a trial size spiking glue. He refused to let me take a picture of it spiked up but my son looks cool and is happy once again. Good golly if this cycling isn't completely different than Sissy's! I don't know how I'm going to be able to keep up with it. Maybe I just won't; maybe I'll take a "let it be" kind of approach.
WG passed the first half of the testing for the accelerated learning program but not the second half so they'll test again. She's got big things coming up. This Sunday is the cantate musical at church that she's been rehearsing for what seems like a decade. In April she'll be the dinosaur for the school play and in May she has a dance recital. She kept a secret for a week about that one. A few weeks back her dance teacher told me that if she kept working hard she'd get moved to the front line for ballet. Currently she's front and center for tap. I told WG to work hard. That was the last we'd heard about it until this Saturday morning, as we're going out the door for dance, WG just nonchalantly throws out, "oh yeah, mom. I'm on the front row for ballet too."
"What? Really?" She chuckled a little and waved her hand like it was no big deal. "When did you find out?" I begged.
Still cool as a cucumber, "oh, last week. I just didn't tell you."
The business is running hard right now, our busiest time of year as most of our clients are preparing to rent homes for a certain extremely important and prestigious golf tournament. It's kind of funny to watch rich people come all undone and get all flustered and fidgety. Toss in the green rain, AKA: pine pollen, and it's just gross out there. I mean GROSS. I'm hoping The Dad doesn't get the notion to start taking pictures anytime soon because I'm standing on ladders with a face mask so I can breathe. Stupid pollen. I'm miserable!
Thinks are looking up, actually.
I don't miss the point that things look up when Sissy's not here.
It makes me so angry that her issues cause that much drama and chaos that 300 posts and I talk about the other four people in this family maybe 10% of the time. It makes me sad that she has to manipulate that much, so much so that she makes our family completely dysfunctional. It makes my heart ache when I realize how much pain, trauma and anxiety she's made us all endure. It causes my head to spin when I realize that she's not showing behaviors at the hospital and will get herself a green card to come home and ... do it all again. Which makes me angry all over again.
I can't go back to hell. I just can't. At what point does the good of the four out weigh the marginally better for the one? And truthfully, there is no "better" for Sissy. She doesn't want it. Isn't seeking it. Can not even try to motivate herself to be better. It's too much damn fun for her to make us all miserable. I won't have it anymore.
It's so different this time, with her being gone. Last time my emotions were so tied into whether or not I'd been an adequate parent, done enough, tried different tactics, used the right therapies, gone to the right doctors and therapists, juggled the right med cocktail. This time I KNOW I've done it all. All of it. There is no stone I've not turned over looking for a solution for healing for Sissy. This time it is glaringly obvious that I'm adequately parenting another disabled child and a very bright, vivacious child - two children with diametrically opposed needs - with flair. We had one upset last week and 25 minutes of tantrum from both of them while The Dad and I held our ground (and giggled a little at their silly pleas for absolution) and we bought a week of good behavior, hugs, love, politeness and unrequested assistance. That wouldn't be possible if we were bad parents.
No, it's not The Dad or me or the business or AB's issues or WG's mad-skills. It's Sissy. She'll either choose to change, or not. I actually have a lot to say on this issue but I'll save it for another post. Today, it's about the four of us: healing, resting, enjoying peace and quiet, playing, giggling, hugging, loving, and discovering that we have gobs and gobs and oh.my.goodness. insane amounts of time and energy because Sissy's not stealing every drop from everyone.
WG passed the first half of the testing for the accelerated learning program but not the second half so they'll test again. She's got big things coming up. This Sunday is the cantate musical at church that she's been rehearsing for what seems like a decade. In April she'll be the dinosaur for the school play and in May she has a dance recital. She kept a secret for a week about that one. A few weeks back her dance teacher told me that if she kept working hard she'd get moved to the front line for ballet. Currently she's front and center for tap. I told WG to work hard. That was the last we'd heard about it until this Saturday morning, as we're going out the door for dance, WG just nonchalantly throws out, "oh yeah, mom. I'm on the front row for ballet too."
"What? Really?" She chuckled a little and waved her hand like it was no big deal. "When did you find out?" I begged.
Still cool as a cucumber, "oh, last week. I just didn't tell you."
The business is running hard right now, our busiest time of year as most of our clients are preparing to rent homes for a certain extremely important and prestigious golf tournament. It's kind of funny to watch rich people come all undone and get all flustered and fidgety. Toss in the green rain, AKA: pine pollen, and it's just gross out there. I mean GROSS. I'm hoping The Dad doesn't get the notion to start taking pictures anytime soon because I'm standing on ladders with a face mask so I can breathe. Stupid pollen. I'm miserable!
Thinks are looking up, actually.
I don't miss the point that things look up when Sissy's not here.
It makes me so angry that her issues cause that much drama and chaos that 300 posts and I talk about the other four people in this family maybe 10% of the time. It makes me sad that she has to manipulate that much, so much so that she makes our family completely dysfunctional. It makes my heart ache when I realize how much pain, trauma and anxiety she's made us all endure. It causes my head to spin when I realize that she's not showing behaviors at the hospital and will get herself a green card to come home and ... do it all again. Which makes me angry all over again.
I can't go back to hell. I just can't. At what point does the good of the four out weigh the marginally better for the one? And truthfully, there is no "better" for Sissy. She doesn't want it. Isn't seeking it. Can not even try to motivate herself to be better. It's too much damn fun for her to make us all miserable. I won't have it anymore.
It's so different this time, with her being gone. Last time my emotions were so tied into whether or not I'd been an adequate parent, done enough, tried different tactics, used the right therapies, gone to the right doctors and therapists, juggled the right med cocktail. This time I KNOW I've done it all. All of it. There is no stone I've not turned over looking for a solution for healing for Sissy. This time it is glaringly obvious that I'm adequately parenting another disabled child and a very bright, vivacious child - two children with diametrically opposed needs - with flair. We had one upset last week and 25 minutes of tantrum from both of them while The Dad and I held our ground (and giggled a little at their silly pleas for absolution) and we bought a week of good behavior, hugs, love, politeness and unrequested assistance. That wouldn't be possible if we were bad parents.
No, it's not The Dad or me or the business or AB's issues or WG's mad-skills. It's Sissy. She'll either choose to change, or not. I actually have a lot to say on this issue but I'll save it for another post. Today, it's about the four of us: healing, resting, enjoying peace and quiet, playing, giggling, hugging, loving, and discovering that we have gobs and gobs and oh.my.goodness. insane amounts of time and energy because Sissy's not stealing every drop from everyone.
Sunday, March 20, 2011
Seeking Serenity
I'm actively attempting to decompress. Today is day X since Sissy went to the hospital. I say Day "X" because I don't want to take the effort to count it. I don't want to make the effort to count it because then I'll be thinking about Sissy. I don't want to think about Sissy because I'm desperately trying to decompress.
The thing is, she's just going to come home and go right back to her crap so instead of thinking about how she's going to come home and go right back to her crap, I'm thinking about other things, on purpose. Every time Sissy comes to my brain, I forcibly change the thought in my head. I have to. I must decompress or I won't survive her return.
The best way to explain it is we've been in a tempest with 30 foot waves crashing on us for years on end. Even the last time she was RTC wasn't a respite because we had non stop phone calls and face-to-face therapy which meant 6 hour round trips in a day ... no respite. In addition, we hadn't gotten to the place emotionally where we could say, she's going to do what she's going to do and we are not responsible for her choices anymore.
Can I just say, it was very hard to get to that emotional point? It was extremely difficult to put aside the fact that she's an adorable, short, chubby 11 year old and get to the heart of her issues. She's not well, will never be well, can not understand the dynamics of a home environment and will be on a crash course for destruction in this environment no matter what we say or do.
It's freeing to be on this side of the fence. However, it is impossible to prevent the 30 foot waves of her tempest from crashing down on us when she's here. So that means I have to make every effort to float on a placid lake every second she is away. I have to close my eyes and concentrate on the smell of the air and the way it sounds as it whistles past my ears. I have to breathe slowly and deeply and take in the green earth around me. I have to train my thoughts on the sounds of birds and bugs, slowing time to a stand still so I can reach out and touch every particle of serenity. I must be a sloth, hanging from a tree for hours on end without moving a muscle and just be without excuse, without purpose, without plan.
I pulled back from the virtual world so I could capture the essence of calm, peace and serenity and attempt to retrain my cells to function without 24/7 high alert adrenaline surges. My cells have screamed for it, given me headaches beseeching the intense psychological impulses of emergency. I have denied them and gone to bed early or taken naps or quilted. Oh, how I have quilted! Just look and see ...
Making progress
the two blocks
12" finished nine-patch square: jacob's ladder with opposing directionality
alternating the rows of blocks after assembly creates a basket weave pattern
Here's a face we've not seen much of lately. Before I left for Orlando, AB was in a manic phase. Now he seems to be in a depressive phase. We've done the lab work for his hormones and see the pdoc again next Thursday. I'm hoping we can make some alterations to his meds and get to the bottom of this early-onset puberty because boy oh boy do I miss this face. I think I prefer manic over depressive. NOT fun.
The thing is, she's just going to come home and go right back to her crap so instead of thinking about how she's going to come home and go right back to her crap, I'm thinking about other things, on purpose. Every time Sissy comes to my brain, I forcibly change the thought in my head. I have to. I must decompress or I won't survive her return.
The best way to explain it is we've been in a tempest with 30 foot waves crashing on us for years on end. Even the last time she was RTC wasn't a respite because we had non stop phone calls and face-to-face therapy which meant 6 hour round trips in a day ... no respite. In addition, we hadn't gotten to the place emotionally where we could say, she's going to do what she's going to do and we are not responsible for her choices anymore.
Can I just say, it was very hard to get to that emotional point? It was extremely difficult to put aside the fact that she's an adorable, short, chubby 11 year old and get to the heart of her issues. She's not well, will never be well, can not understand the dynamics of a home environment and will be on a crash course for destruction in this environment no matter what we say or do.
It's freeing to be on this side of the fence. However, it is impossible to prevent the 30 foot waves of her tempest from crashing down on us when she's here. So that means I have to make every effort to float on a placid lake every second she is away. I have to close my eyes and concentrate on the smell of the air and the way it sounds as it whistles past my ears. I have to breathe slowly and deeply and take in the green earth around me. I have to train my thoughts on the sounds of birds and bugs, slowing time to a stand still so I can reach out and touch every particle of serenity. I must be a sloth, hanging from a tree for hours on end without moving a muscle and just be without excuse, without purpose, without plan.
I pulled back from the virtual world so I could capture the essence of calm, peace and serenity and attempt to retrain my cells to function without 24/7 high alert adrenaline surges. My cells have screamed for it, given me headaches beseeching the intense psychological impulses of emergency. I have denied them and gone to bed early or taken naps or quilted. Oh, how I have quilted! Just look and see ...
Coasters - prize for my 100th follower: Mommy needs therapy!
Getting started on the March Panel
Making progress
the two blocks
12" finished nine-patch square: jacob's ladder with opposing directionality
alternating the rows of blocks after assembly creates a basket weave pattern
design is original
Here's a face we've not seen much of lately. Before I left for Orlando, AB was in a manic phase. Now he seems to be in a depressive phase. We've done the lab work for his hormones and see the pdoc again next Thursday. I'm hoping we can make some alterations to his meds and get to the bottom of this early-onset puberty because boy oh boy do I miss this face. I think I prefer manic over depressive. NOT fun.
Wednesday, March 16, 2011
So very different.
I had no idea that the post "Layers of Loss" would be so huge. And by huge I mean colossal. My inbox has been jammed with positive affirmations. Some readers are blessing me with packages just because. The article has been picked up by ATTACh.org and has been recommended to a few other parenting trauma agencies.
In short, I'm overwhelmed.
When I wrote that post I wasn't thinking I know, I'll write something poignant that will get straight to the heart of my readers and generate a limelight that I can bask in but that is exactly what I've done. It's as though I've extended the bliss of Orlando for an extra week.
I just can't hug you all.
*attempts to hug the laptop*
Nope. Not the same.
The irony of all this attention and praise is that because parenting trauma is so challenging and in-your-face everyday, it is incredibly difficult to receive compliments. There are a few nuggets I've picked up from all the years of attending therapy sessions with Sissy. One of which is that it takes six positives to undo one negative.
Well, I've had ten years of incessant negative from Sissy. Doing some math with that therapeutic postulate, it will take sixty years to undo the damage to my psyche. And when I put it that way, it helps me absolve myself of guilt. Yes. I feel guilty that I can't absorb these accolades.
Really. I can't.
It's like people are trying to throw waded up, water-soaked napkins at me while I dance on a table... they won't stick. They just bounce off. I guess I can consider it one more layer of loss then: the inability to accept that I'm a cool person, despite what my child does or says.
Sissy figuratively shouts in a bullhorn all day you suck! you suck! you suck!
I guess I simultaneously need a cheering section on the other side shouting back through bullhorns you rock! you rock! you rock!. And then if ya'll could just go ahead and do that all day, every day like she does, I might begin to believe that I rock, not suck.
Sunday, I filled in for Sissy at her cookie booth. Her girl scout troop had snagged the last day for cookie sales at one of the busiest grocery stores in our community. Fortuitously, I stuck the I am not alone rock in my pocket. Good choice. The other moms and daughters were so cheery and plucky and ... blech. nauseating.
*enter vomit sounds here*
I just kept rubbing my rock in my pocket so I could feel the engraving on my thumb. Inconspicuously of course. I accept that I'd look a bit like Gollum from LOTR, obsessing over the ring if I'd held the rock up under my nose and rubbed and rubbed while chanting in a gravely moan, my precious even though that's exactly what it felt like I was doing. I took big cleansing breaths and smiled. Even said, "how nice" a few times. Two hours with NT moms and their NT kids. Oye.
After so many layers of loss, life and humanity looks indelibly different.
So very different.
In short, I'm overwhelmed.
When I wrote that post I wasn't thinking I know, I'll write something poignant that will get straight to the heart of my readers and generate a limelight that I can bask in but that is exactly what I've done. It's as though I've extended the bliss of Orlando for an extra week.
I just can't hug you all.
*attempts to hug the laptop*
Nope. Not the same.
The irony of all this attention and praise is that because parenting trauma is so challenging and in-your-face everyday, it is incredibly difficult to receive compliments. There are a few nuggets I've picked up from all the years of attending therapy sessions with Sissy. One of which is that it takes six positives to undo one negative.
Well, I've had ten years of incessant negative from Sissy. Doing some math with that therapeutic postulate, it will take sixty years to undo the damage to my psyche. And when I put it that way, it helps me absolve myself of guilt. Yes. I feel guilty that I can't absorb these accolades.
Really. I can't.
It's like people are trying to throw waded up, water-soaked napkins at me while I dance on a table... they won't stick. They just bounce off. I guess I can consider it one more layer of loss then: the inability to accept that I'm a cool person, despite what my child does or says.
Sissy figuratively shouts in a bullhorn all day you suck! you suck! you suck!
I guess I simultaneously need a cheering section on the other side shouting back through bullhorns you rock! you rock! you rock!. And then if ya'll could just go ahead and do that all day, every day like she does, I might begin to believe that I rock, not suck.
Sunday, I filled in for Sissy at her cookie booth. Her girl scout troop had snagged the last day for cookie sales at one of the busiest grocery stores in our community. Fortuitously, I stuck the I am not alone rock in my pocket. Good choice. The other moms and daughters were so cheery and plucky and ... blech. nauseating.
*enter vomit sounds here*
I just kept rubbing my rock in my pocket so I could feel the engraving on my thumb. Inconspicuously of course. I accept that I'd look a bit like Gollum from LOTR, obsessing over the ring if I'd held the rock up under my nose and rubbed and rubbed while chanting in a gravely moan, my precious even though that's exactly what it felt like I was doing. I took big cleansing breaths and smiled. Even said, "how nice" a few times. Two hours with NT moms and their NT kids. Oye.
After so many layers of loss, life and humanity looks indelibly different.
So very different.
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