I received a message from one of the online autism groups I am a member of about a mother of four-year-old twin boys; both who have autism.
Last week she dropped the boys at school, walked out to her car, and died of a brain aneurysm.
The words have haunted me over the past 24 hours. I know that anyone can have an aneurysm, but did the stress of parenting her boys ultimately lead to her death?
I am sure I am not alone in this world of special needs parenting when I say that I have thought many times that I am slowly killing myself by not getting my stress managed to a more controlled level.
This is an eye-opener for me. One more reason to top many for getting our family into a more stable situation.
Say a prayer for those boys, okay?
Tuesday, January 26, 2010
Sunday, January 24, 2010
Seven Minutes In The Life Of M
I was originally thinking of doing a very short entry that read as follows:
Thanks for calling. We're sorry we're not home right now...we've all gone stark-raving mad!
And then I was going to leave you with a short video of my boy making THE.SOUNDS he makes 99.7% of every single day lately that have us all loony, nervous-like wrecks.
But I'm not really good at sticking to my plans. And I'm certainly not very good at being concise and to the point. So when I began shooting my little video on my sweet new, Mino high definition Flip video camera, well, let's just say it turned into a seven-minute documentary that you may or may not feel the need to watch after reading all of this.
I questioned myself for a moment when considering putting this here for such public viewing, but because I know it has helped me numerous times to see videos of other children like M, (whose name I totally spill in the video-doh!), I thought it might be beneficial for some of you readers as well. Not only might you feel oddly reassured that someone else's child has similar mannerisms or sounds to your child, but my close friends and family who don't necessarily see this side of M--or who don't really see M in person at all--can get a little better vantage point of what life can be like around here.
That said, I do feel the need to let you know that M most definitely is more than the sounds, flapping arms, and pacing that you'll see in this 7-minute clip. There are moments of clarity and quiet where he surprises us with a few longed-for words or his amazing, dimply smile. But it seems like with the regression we've seen over the past almost-two-years, our boy offers less and less of what I know is lurking somewhere deep inside him still. He doesn't seem to find much pleasure in any activity other than the occasional book and, of course, movies. We did have a relatively sound-free couple of hours hunting sea glass and pretty rocks at the beach yesterday, but he actually freaked us out a little with his calmness. At one point he was so, so very calm that he just laid on his side in the sand--in a strange s-shape--looking nearly catatonic with his eyes open, but his body frozen. And no, I don't believe he was having any sort of seizure here, (because someone will inevitably ask), but the possibility that some sort of seizures may be occurring completely without our notice is starting to nip at my awareness.
*If any of you readers have discovered that your child is/was having seizures that you were unaware of, please, please let me know. I am very aware of what 'absent seizures' look like and know that M has never had one of these...but what if there are other types of seizures that have slowly damaged his brain over the last two years without any of us realizing it?
Well, before I start heading off on another tangent, here is the video from this evening...and the reason that the other half and I just might be a tiny bit more tense than usual lately...
Thanks for calling. We're sorry we're not home right now...we've all gone stark-raving mad!
And then I was going to leave you with a short video of my boy making THE.SOUNDS he makes 99.7% of every single day lately that have us all loony, nervous-like wrecks.
But I'm not really good at sticking to my plans. And I'm certainly not very good at being concise and to the point. So when I began shooting my little video on my sweet new, Mino high definition Flip video camera, well, let's just say it turned into a seven-minute documentary that you may or may not feel the need to watch after reading all of this.
I questioned myself for a moment when considering putting this here for such public viewing, but because I know it has helped me numerous times to see videos of other children like M, (whose name I totally spill in the video-doh!), I thought it might be beneficial for some of you readers as well. Not only might you feel oddly reassured that someone else's child has similar mannerisms or sounds to your child, but my close friends and family who don't necessarily see this side of M--or who don't really see M in person at all--can get a little better vantage point of what life can be like around here.
That said, I do feel the need to let you know that M most definitely is more than the sounds, flapping arms, and pacing that you'll see in this 7-minute clip. There are moments of clarity and quiet where he surprises us with a few longed-for words or his amazing, dimply smile. But it seems like with the regression we've seen over the past almost-two-years, our boy offers less and less of what I know is lurking somewhere deep inside him still. He doesn't seem to find much pleasure in any activity other than the occasional book and, of course, movies. We did have a relatively sound-free couple of hours hunting sea glass and pretty rocks at the beach yesterday, but he actually freaked us out a little with his calmness. At one point he was so, so very calm that he just laid on his side in the sand--in a strange s-shape--looking nearly catatonic with his eyes open, but his body frozen. And no, I don't believe he was having any sort of seizure here, (because someone will inevitably ask), but the possibility that some sort of seizures may be occurring completely without our notice is starting to nip at my awareness.
*If any of you readers have discovered that your child is/was having seizures that you were unaware of, please, please let me know. I am very aware of what 'absent seizures' look like and know that M has never had one of these...but what if there are other types of seizures that have slowly damaged his brain over the last two years without any of us realizing it?
Well, before I start heading off on another tangent, here is the video from this evening...and the reason that the other half and I just might be a tiny bit more tense than usual lately...
Wednesday, January 13, 2010
Diary Of A Guilt-Ridden Mom
I'm sick. Like can't breathe out of my nose, or swallow the pins in my throat sick.
I'm a tiny bit claustrophobic and have a history of sinus issues, so not being able to breathe out of my nose sort of sends me into a tailspin.
And where did I get the latest sickness? M. M who won't stop putting his hands in his mouth or stop chewing on germy things. We get sick way too often around here and yesterday I got really angry about it.
I'm solo parenting until I take M back to the mother ship tomorrow where the other half and B already are. Solo parenting a kid who doesn't feel well while I also don't feel well is not a very good recipe. Add to that the fact that M would not go to sleep on Monday night until he finally crashed (with me in bed beside him) at 11 pm.
He must have gotten out of his own bed four times before I finally gave up any chance of alone-time and went to bed with him. So when he decided to play the same game last night even though I thought I was being wise by starting him in my bed, I blew up. I was a mean Mommy. I talked loudly to him in complicated strings of emotional blubber that I know he never could have totally understood. I made him cry when I yelled at him to JUST STOP MAKING THOSE SOUNDS FOR ONE MINUTE! How horrifying to not be in control of those sounds and then to also not be in control of someone twice your size getting angry at you because of them.
I feel absolutely terrible about it.
The other half called during this time and I said more mean things to him. I told him that I didn't know what to do with this child who has spent the last 48 hours in constant, vibrating, sing-songy sound and motion. I wondered aloud if it was time to put him on medication to make him stop. Just for one freaking minute. I said that I didn't care that he was sitting on the steps below me waiting for me to lay down with him AGAIN because I didn't feel good either and DAMN IT, I deserved a break too.
In other words...I sounded like a big freaking bratty baby. I know I did and I freely admit it. I have a lot of making up to do to him today and the worst thing is that he'll readily accept it rather than dish back to me a bit of what I likely deserve.
Sometimes not getting any feedback from your non-verbal child is way worse than any of the behaviors they emote. It's like talking to a wall, except that you're looking at your beautiful child and just wishing they'd say, 'Mommy, I love you! I'm sorry I made you mad.' -or- 'Mommy, please stop yelling at me. You're hurting my feelings!' I have heard Miles say he loves me--genuinely said it without prompting--twice. TWICE. And both times I bawled my eyes out like a baby (like I am now at the thought) because I needed so desperately to hear those words and to know that he was capable of loving me. Crap. This has taken a turn I hadn't intended and now I think I probably just need to take a moment to myself before he wakes up to ask for forgiveness from the universe. And then I will begin working on his forgiveness too. Clearly he's needed me more than I have been capable of giving the past two days and I need to make that up to him.
Parenting is hard, isn't it?
I'm a tiny bit claustrophobic and have a history of sinus issues, so not being able to breathe out of my nose sort of sends me into a tailspin.
And where did I get the latest sickness? M. M who won't stop putting his hands in his mouth or stop chewing on germy things. We get sick way too often around here and yesterday I got really angry about it.
I'm solo parenting until I take M back to the mother ship tomorrow where the other half and B already are. Solo parenting a kid who doesn't feel well while I also don't feel well is not a very good recipe. Add to that the fact that M would not go to sleep on Monday night until he finally crashed (with me in bed beside him) at 11 pm.
He must have gotten out of his own bed four times before I finally gave up any chance of alone-time and went to bed with him. So when he decided to play the same game last night even though I thought I was being wise by starting him in my bed, I blew up. I was a mean Mommy. I talked loudly to him in complicated strings of emotional blubber that I know he never could have totally understood. I made him cry when I yelled at him to JUST STOP MAKING THOSE SOUNDS FOR ONE MINUTE! How horrifying to not be in control of those sounds and then to also not be in control of someone twice your size getting angry at you because of them.
I feel absolutely terrible about it.
The other half called during this time and I said more mean things to him. I told him that I didn't know what to do with this child who has spent the last 48 hours in constant, vibrating, sing-songy sound and motion. I wondered aloud if it was time to put him on medication to make him stop. Just for one freaking minute. I said that I didn't care that he was sitting on the steps below me waiting for me to lay down with him AGAIN because I didn't feel good either and DAMN IT, I deserved a break too.
In other words...I sounded like a big freaking bratty baby. I know I did and I freely admit it. I have a lot of making up to do to him today and the worst thing is that he'll readily accept it rather than dish back to me a bit of what I likely deserve.
Sometimes not getting any feedback from your non-verbal child is way worse than any of the behaviors they emote. It's like talking to a wall, except that you're looking at your beautiful child and just wishing they'd say, 'Mommy, I love you! I'm sorry I made you mad.' -or- 'Mommy, please stop yelling at me. You're hurting my feelings!' I have heard Miles say he loves me--genuinely said it without prompting--twice. TWICE. And both times I bawled my eyes out like a baby (like I am now at the thought) because I needed so desperately to hear those words and to know that he was capable of loving me. Crap. This has taken a turn I hadn't intended and now I think I probably just need to take a moment to myself before he wakes up to ask for forgiveness from the universe. And then I will begin working on his forgiveness too. Clearly he's needed me more than I have been capable of giving the past two days and I need to make that up to him.
Parenting is hard, isn't it?
Tuesday, January 12, 2010
Allies In Strange Places?
I still haven't heard back from the special education director, but the district's BCBA (board certified behavioral analyst) called yesterday and I asked her if the director had mentioned getting my messages. This turned into a full-on confessional of my thoughts and concerns about my son's school program and the incompetent teachers and aides he is with most of his day. I was hesitant to spill some of the beans with her--which she totally sensed--and then admitted to me that she has been documenting some of her own concerns about these people and their ability to connect with M as well as properly execute the programs she has laid out before them. It was a relief to hear her tell me this. I mean, don't we all just need a little validation of our feelings every once in awhile to let us know we aren't completely off our rockers? I know I probably need that validation more than most given my teetering position on the edge of sanity's cliff :)
Anyhow, she took notes of our conversation and was going to send them to the director for discussion. She suggested that the three of us get together to speak further about all of this. I told her I was open to that as long as the classroom teacher was not there because I wanted to be able to feel I could be open and honest. So we will see what this brings about...
Ironically, we are closer than ever to getting the heck out of dodge for M's sake. We are considering the boys, pets and I making a move back to the mother ship soon where we'd live in a rental home while the other half stays here to sell this one.
In the town I grew up in, there are more than a few elementary schools that have 'centralized structured classrooms' for kids with autism. They are set up using autism-specific methodologies; organized, quieter, and language-based. FOR FREE! It's absurd to me that there aren't more options like that here. Absolutely absurd.
But what would be even more absurd, and oh-so in line with the way life has gone 'round here, is if this district finally agreed to pay for the crazy-expensive private school for M right when I was thisclose to moving back to Texas. I am really not sure what our response would be if that was offered to us at this point. As much as we love it here, we are realizing the value of family support for the mental well being of each member of our family.
So stay tuned for more...I have no idea where this train's taking us!
Anyhow, she took notes of our conversation and was going to send them to the director for discussion. She suggested that the three of us get together to speak further about all of this. I told her I was open to that as long as the classroom teacher was not there because I wanted to be able to feel I could be open and honest. So we will see what this brings about...
Ironically, we are closer than ever to getting the heck out of dodge for M's sake. We are considering the boys, pets and I making a move back to the mother ship soon where we'd live in a rental home while the other half stays here to sell this one.
In the town I grew up in, there are more than a few elementary schools that have 'centralized structured classrooms' for kids with autism. They are set up using autism-specific methodologies; organized, quieter, and language-based. FOR FREE! It's absurd to me that there aren't more options like that here. Absolutely absurd.
But what would be even more absurd, and oh-so in line with the way life has gone 'round here, is if this district finally agreed to pay for the crazy-expensive private school for M right when I was thisclose to moving back to Texas. I am really not sure what our response would be if that was offered to us at this point. As much as we love it here, we are realizing the value of family support for the mental well being of each member of our family.
So stay tuned for more...I have no idea where this train's taking us!
Friday, January 8, 2010
Frustration
I left a message at 10 am this past Monday morning for the new special education director of our school district. I left a message at 10 am on Thursday for her. I also left a message at 1:30 pm today. Guess what? I still haven't heard back from her!
I'm getting weird vibes from M's teacher, so I have a strong hunch the director is gathering as much ammo against us as she can before we speak...but how freaking unprofessional is she being by not getting back to me?
And here's one for the 'she-really-said-that?' files...one of M's aides who has in the past expressed interest in learning about some of the biomedical stuff we are doing with him used my past discussions about PANDAS and strep titers in a most inappropriate manner...
M had a VERY bad day on Tuesday following a night when he woke up at 4 am and kept the rest of us up as well. When I went to pick him up, one aide said to me, 'He is being nasty. Just nasty! He is really lashing out at everyone.' And then the other aide in this whiny-ass voice said, 'Yeah, he scratched me really hard. It made me bleed and hurt a lot.' And the kicker...'I probably shouldn't ask you this, but do I need to be worried about that bacteria you told me he might have?'
I paused with furrowed brow wondering if I'd really heard her ask such a dumbass question. I finally could only respond with a 'Whu?? No!' I told the other half that I wished I'd been quicker and actually said, 'No, you don't need to worry about the bacteria, but you should probably worry about the very rare South African Wamu Wamu disease that he has.'
She's a dumbass...
They are all dumbasses...
Am I being too harsh?
I'm getting weird vibes from M's teacher, so I have a strong hunch the director is gathering as much ammo against us as she can before we speak...but how freaking unprofessional is she being by not getting back to me?
And here's one for the 'she-really-said-that?' files...one of M's aides who has in the past expressed interest in learning about some of the biomedical stuff we are doing with him used my past discussions about PANDAS and strep titers in a most inappropriate manner...
M had a VERY bad day on Tuesday following a night when he woke up at 4 am and kept the rest of us up as well. When I went to pick him up, one aide said to me, 'He is being nasty. Just nasty! He is really lashing out at everyone.' And then the other aide in this whiny-ass voice said, 'Yeah, he scratched me really hard. It made me bleed and hurt a lot.' And the kicker...'I probably shouldn't ask you this, but do I need to be worried about that bacteria you told me he might have?'
I paused with furrowed brow wondering if I'd really heard her ask such a dumbass question. I finally could only respond with a 'Whu?? No!' I told the other half that I wished I'd been quicker and actually said, 'No, you don't need to worry about the bacteria, but you should probably worry about the very rare South African Wamu Wamu disease that he has.'
She's a dumbass...
They are all dumbasses...
Am I being too harsh?
Tuesday, January 5, 2010
Monday, January 4, 2010
Today...
...my son who absolutely does show happiness and excitement over seeing some people he has not seen in awhile, did not offer up any emotion at all as his aide drove toward us smiling and waving.
Today...
...as I sat with him in the car while he finished his milk with a calmer body than most school mornings, I made him this promise: This year I will make this better for you. I absolutely will.
Today...
...my son walked without event or emotion into his classroom and took his seat in the gray chair among a sea of blue ones. I find the symbolism of this gray chair--the one they put there to 'help him' know his seat from the others--ironic and sad.
Today...
...I will fight some more for a promising, APPROPRIATE, and FAIR education for my boy who has so much potential that continues to go unseen by these people.
Today...
...as I sat with him in the car while he finished his milk with a calmer body than most school mornings, I made him this promise: This year I will make this better for you. I absolutely will.
Today...
...my son walked without event or emotion into his classroom and took his seat in the gray chair among a sea of blue ones. I find the symbolism of this gray chair--the one they put there to 'help him' know his seat from the others--ironic and sad.
Today...
...I will fight some more for a promising, APPROPRIATE, and FAIR education for my boy who has so much potential that continues to go unseen by these people.
Friday, January 1, 2010
Oh, The Wonderful Things That Autism Can Do
Remember when I wrote this about the woman on the other side of the country who sent me an adaptive computer mouse and an amazingly beautiful photo of her autistic daughter with a note about paying it forward?
The universe seems to have weird ways of bringing people together, and today I had another such encounter.
I'm on a local freecycle group...nothing specifically to do with special needs or autism. People request things they'd like to have all the time, and mostly I skim over these posts.
Today, however, a woman requested a list of items for a student. She said the student was going to college/residential program. This was the extent of her description of this young man and yet I *knew* that this boy had autism. I just KNEW it! Even more ironic was that one of her 6 requested items was a printer. I just so happened to have hooked up the new printer my parents sent us for Christmas and was going to post my old one to freecycle within the next day or so! So naturally, this was the perfect fit.
I didn't ask any questions about the student, I just told her that I had a few of the items she needed. I received the following email response from her:
the student in question has autism. he's going to a program in xxxx for kids that need residential/academic support.
he was my high school student briefly and he's living with me because his mom is a drug addicted psycho.
he got a full scholarship for the program through regional center who cares for adults w/disabilities.
he's 18.
Amazing, huh? So I've sent a note to see how else I can assist this boy who has clearly had a tough life and whose mother has obviously had her own tough life to deal with as well. You know, if I hadn't actually walked many days in her shoes, I'd probably call her a psycho too. And maybe she is; but because I can empathize with how difficult this can be, I have heartfelt sadness for her as well. I've seen autism and I have seen drugs, and trust me when I tell you that both can leave you feeling lost and empty. But perhaps that is meant for a separate post? Or not...!
The universe seems to have weird ways of bringing people together, and today I had another such encounter.
I'm on a local freecycle group...nothing specifically to do with special needs or autism. People request things they'd like to have all the time, and mostly I skim over these posts.
Today, however, a woman requested a list of items for a student. She said the student was going to college/residential program. This was the extent of her description of this young man and yet I *knew* that this boy had autism. I just KNEW it! Even more ironic was that one of her 6 requested items was a printer. I just so happened to have hooked up the new printer my parents sent us for Christmas and was going to post my old one to freecycle within the next day or so! So naturally, this was the perfect fit.
I didn't ask any questions about the student, I just told her that I had a few of the items she needed. I received the following email response from her:
the student in question has autism. he's going to a program in xxxx for kids that need residential/academic support.
he was my high school student briefly and he's living with me because his mom is a drug addicted psycho.
he got a full scholarship for the program through regional center who cares for adults w/disabilities.
he's 18.
Amazing, huh? So I've sent a note to see how else I can assist this boy who has clearly had a tough life and whose mother has obviously had her own tough life to deal with as well. You know, if I hadn't actually walked many days in her shoes, I'd probably call her a psycho too. And maybe she is; but because I can empathize with how difficult this can be, I have heartfelt sadness for her as well. I've seen autism and I have seen drugs, and trust me when I tell you that both can leave you feeling lost and empty. But perhaps that is meant for a separate post? Or not...!
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