Lately, I've discovered the show Criminal Minds which is on reruns on a satellite station. I think I must be close to having seen all of the episodes now. In any case, often on the show they talk about "victimology" which obviously means the study of victims, usually of crimes. On Criminal Minds, they study the victims, usually of serial violent offenders, to pinpoint patterns or specific characteristics of the victims that might link them. This could be anything from hair color to race to location and so on.
I've been thinking a lot about how special needs children are so much more vulnerable to becoming victims than the rest of us without special needs. We have certainly heard in the news about children being bullied in schools. These victims are not often popular, intelligent, athletic, and smooth students. The victims a lot of the times are children with special needs, not always autism but often possessing social deficits and/or behavioral challenges.
Special needs children are more frequently abused as well. Let's face it: they can be challenging to deal with and that challenge can lead to frustration and push people to their tipping point. (Please understand that I do not mean this to be ANY kind of excuse for inexcusable, not to mention illegal, actions. Nor do I mean to "blame the victim.") I'm devastated to hear stories in the news about murder/suicide when a parent kills their child and then commits suicide. I cannot really even fathom the kind of despair that drives that act.
Special needs children are more frequently the victims of other crimes, violent or not. Because their developmental level may be younger than same-age peers they can often be gullible, overly-trusting, and generally show poor judgment.
Lastly, children with autism are more likely to be victims of accidents, sometimes leading to death. It seems like in the summer we hear a story or two PER WEEK of a child with autism wandering away to their own death- drowning being the most common end. Until you've experienced a child who is a "runner" firsthand, it really is impossible to understand how difficult it is to keep these children safe. I've also heard of autistic children falling to their death, jumping out of a window, getting hit by cars, dying in a fire, being left in a hot car.
It's heartbreaking to hear these stories. But I feel it's important to tell these stories so that people know how fragile our children are. How vulnerable they are to predators, bullies, accidents. Vulnerable even to themselves and their own lack of judgment.
Monday, August 8, 2011
Tuesday, June 7, 2011
Endings...
A very very long school year ends this week.
The girl child is graduating from elementary school and after much deliberation and many pro/con lists (and many objections from said child) she will be attending middle school at our church's school, starting in the fall. More about that some other time....
The middle is doing well, growing in his own ways, made lots of good friends this year.
And then there is B. Summer really can't come fast enough for him. He probably just had the most stressful school year yet. Some of it could be because he's just more aware now that he's older, because some of those preschool years certainly would have had me running for the hills. This year I learned that he can have a pretty good school team but still have a miserable year. How, you might ask? Trying spending a 8 hour days (including 2 excessively long bus rides) with 5 boys with severe autism, all the while having autism yourself. Yeah, so that's why.
Right in the new semester, B was pinching and pulling hair many many times per day. Mind you, this is a kid who was never aggressive before starting kindergarten. He could certainly throw a tantrum that would bring everyone to their knees and the OCD and the eloping and... he had a lot of behavioral issues. But never was he aggressive. But by January, I could no longer trust him within 3 feet of another child, including my own.
I guess the school took all the right steps. They observed, took data, wrote a behavior plan. The sad reality is: That behavior worked for him. We can do lots of things to reduce it whether it be positive reinforcement or some punishments. But it will never be totally gone; it will always be in his bag and he could pull it out at any time. That makes me feel sad. Actually, it's not really sad that I feel, it's more like supremely pissed off, but let's just go with "sad" because it makes me sound less crazy.
The girl child is graduating from elementary school and after much deliberation and many pro/con lists (and many objections from said child) she will be attending middle school at our church's school, starting in the fall. More about that some other time....
The middle is doing well, growing in his own ways, made lots of good friends this year.
And then there is B. Summer really can't come fast enough for him. He probably just had the most stressful school year yet. Some of it could be because he's just more aware now that he's older, because some of those preschool years certainly would have had me running for the hills. This year I learned that he can have a pretty good school team but still have a miserable year. How, you might ask? Trying spending a 8 hour days (including 2 excessively long bus rides) with 5 boys with severe autism, all the while having autism yourself. Yeah, so that's why.
Right in the new semester, B was pinching and pulling hair many many times per day. Mind you, this is a kid who was never aggressive before starting kindergarten. He could certainly throw a tantrum that would bring everyone to their knees and the OCD and the eloping and... he had a lot of behavioral issues. But never was he aggressive. But by January, I could no longer trust him within 3 feet of another child, including my own.
I guess the school took all the right steps. They observed, took data, wrote a behavior plan. The sad reality is: That behavior worked for him. We can do lots of things to reduce it whether it be positive reinforcement or some punishments. But it will never be totally gone; it will always be in his bag and he could pull it out at any time. That makes me feel sad. Actually, it's not really sad that I feel, it's more like supremely pissed off, but let's just go with "sad" because it makes me sound less crazy.
Thursday, January 27, 2011
I've been gone (i.e. getting my ass handed to me)
Oy vey. Where to start.... I just re-read my last post, which was almost 3 months ago. A lot can change in 3 months. <---understated
We had some inevitable and expected changes. For one thing, B's usual medicaid worker left us after 9 great months. No one is ever perfect, but she was damned near close. The holidays. Or as I now call them: days I used to love and I still try to make awesome only to be disappointed. Christmas is my favorite holiday; notwithstanding, the break and having the kids home was AWFUL. Like jump out a window bad. I could see all through November and December, it was building. B's anxiety, then the OCD, then the little bit more OCD. Next thing I know I see my sweet 10 year old daughter asking her autistic brother's permission to make a bagel FOR HERSELF. That was the proverbial straw. We were all tiptoeing around the 6 year old. The doors, the lights, the endless rituals, the tv hum, repeating the words "red circle button" over and over- I have no idea what that even means. This, alternating with ear-piercing screaming, basically is what my house was like for 2 weeks.
Did I try to go out? Yes. (Stop shaking your head, I had to try!) I thought maybe it would help. Maybe we just had bad cabin fever. The husband was home, we decided to try the mall: it was free, we could make a quick exit, it was indoor. The good news is that we are all still alive. The bad news is that there might have been some blood, definitely there were tears and sweat. B had several tantrums but saved the best one for the crowded food court. Who do we run into but our landlord, the one I've been trying to hide my crazy destructive hazardous child from. Ugh. Well the cat's out of that bag. Good thing we signed a two year lease.
I really could go on and on about break, but really the worst part was when we got a new medicaid worker, who by all accounts has loads of experience in the field, and after two days she quit saying she just could not handle his behavior, the screaming, the tantrums, etc.... On the one hand, I wanted to beg her to take me with her to the place where quitting is an option- by that point I was ready to quit. (I might have googled leaving an older child at a fire station, not because I was going to do this but I was curious whether or not it was an option.) On the other hand, I was highly annoyed. I mean, we are talking about a 6 year old who is maybe 45lbs dripping wet- get a grip! He has autism, stop taking it all personally. Easier said than done. Now we have virtually no help. So that's not good. <---- also understated.
We had some inevitable and expected changes. For one thing, B's usual medicaid worker left us after 9 great months. No one is ever perfect, but she was damned near close. The holidays. Or as I now call them: days I used to love and I still try to make awesome only to be disappointed. Christmas is my favorite holiday; notwithstanding, the break and having the kids home was AWFUL. Like jump out a window bad. I could see all through November and December, it was building. B's anxiety, then the OCD, then the little bit more OCD. Next thing I know I see my sweet 10 year old daughter asking her autistic brother's permission to make a bagel FOR HERSELF. That was the proverbial straw. We were all tiptoeing around the 6 year old. The doors, the lights, the endless rituals, the tv hum, repeating the words "red circle button" over and over- I have no idea what that even means. This, alternating with ear-piercing screaming, basically is what my house was like for 2 weeks.
Did I try to go out? Yes. (Stop shaking your head, I had to try!) I thought maybe it would help. Maybe we just had bad cabin fever. The husband was home, we decided to try the mall: it was free, we could make a quick exit, it was indoor. The good news is that we are all still alive. The bad news is that there might have been some blood, definitely there were tears and sweat. B had several tantrums but saved the best one for the crowded food court. Who do we run into but our landlord, the one I've been trying to hide my crazy destructive hazardous child from. Ugh. Well the cat's out of that bag. Good thing we signed a two year lease.
I really could go on and on about break, but really the worst part was when we got a new medicaid worker, who by all accounts has loads of experience in the field, and after two days she quit saying she just could not handle his behavior, the screaming, the tantrums, etc.... On the one hand, I wanted to beg her to take me with her to the place where quitting is an option- by that point I was ready to quit. (I might have googled leaving an older child at a fire station, not because I was going to do this but I was curious whether or not it was an option.) On the other hand, I was highly annoyed. I mean, we are talking about a 6 year old who is maybe 45lbs dripping wet- get a grip! He has autism, stop taking it all personally. Easier said than done. Now we have virtually no help. So that's not good. <---- also understated.
Tuesday, November 2, 2010
Suck it up.
Well, the pity party is over. Grief comes in waves and right now things are pretty status quo. It's not that I'm enjoying having autism in my life. And I'm certainly not enjoying the tantrums, the therapy appts all over the metropolis, the seemingly-endless advocacy. But today, maybe just today, life is ok.
Sometimes I wonder if it's my attitude that is really the problem. After all, attitude is everything, attitude is the minds paintbrush, [insert your own cliche attitude quote right here]. I try to be optimistic. But it's difficult when you are faced with a situation where it is a given that the end will not be good. Or the end will not be what I wanted. And it's also difficult to feel positive when I witness such ugliness and discrimination toward my child with autism. If you want to get a sense of what I'm talking about, just bring my child to a mall, playground, or out to eat- you will be turning heads, receiving glares, and hearing parents whisper to their child "I am sooo glad you don't act like that."
On the flip side, maybe autism really does suck and it's not my attitude. Most parents I know with an autistic child, especially a child who tends toward the severe end, are hard pressed to find blessings in this mess of smeared poo. I'm not saying there are none, but just that there are extremely few. I often wonder if it's the autism that makes us jaded or what. In between the medical appts, the head-splitting tantrums, getting kicked punched and bitten, the paperwork, being pissed at the school for being shitty, the judgment from "the public", the worrying about the future... there is little time for thoughts of sunshine and rainbows and puppies.
But today I am just here. Everything is settled and calm. I just need an outsider to look in and tell me if I've changed or if things are truly better. This is the normal. Perhaps acceptance isn't too far away.
Sometimes I wonder if it's my attitude that is really the problem. After all, attitude is everything, attitude is the minds paintbrush, [insert your own cliche attitude quote right here]. I try to be optimistic. But it's difficult when you are faced with a situation where it is a given that the end will not be good. Or the end will not be what I wanted. And it's also difficult to feel positive when I witness such ugliness and discrimination toward my child with autism. If you want to get a sense of what I'm talking about, just bring my child to a mall, playground, or out to eat- you will be turning heads, receiving glares, and hearing parents whisper to their child "I am sooo glad you don't act like that."
On the flip side, maybe autism really does suck and it's not my attitude. Most parents I know with an autistic child, especially a child who tends toward the severe end, are hard pressed to find blessings in this mess of smeared poo. I'm not saying there are none, but just that there are extremely few. I often wonder if it's the autism that makes us jaded or what. In between the medical appts, the head-splitting tantrums, getting kicked punched and bitten, the paperwork, being pissed at the school for being shitty, the judgment from "the public", the worrying about the future... there is little time for thoughts of sunshine and rainbows and puppies.
But today I am just here. Everything is settled and calm. I just need an outsider to look in and tell me if I've changed or if things are truly better. This is the normal. Perhaps acceptance isn't too far away.
Friday, August 13, 2010
School is almost here. Kindergarten.
I got caught up in life recently. And the truth is, I didn't know what to blog about again.
Ben is going to start Kindergarten in a couple weeks. It's big and it's no big deal, at the same time. I generally try not to over-think things like this. But it's certainly not lost on me that every other 5 year old that I know is gearing up to go to our neighborhood school.
Literally, the school is in our neighborhood- the neighborhood that on that fateful day in Dec 2004 I brought a tiny 7lb perfectly healthy newborn home from the hospital. Then we did the playgroups and picnics and the birthday parties. We even tried the preschool that Ben's older sister and brother attended. I don't have to tell you how that ended, but I will share that it was a painful few years watching those babies and toddlers fly by him. And then watching kids years his junior pass him.
I'd like to say I'm over it, but of course, I'm no where near over it. The pain doesn't really diminish, it just changes. Now it is hard to even imagine how things should have been- what it would feel like if Ben were going to that school and we were sitting by the mailbox to find out who his teacher will be and how many classmates we know. And he'd be talking. And I'd still be talking to those other parents about all-things-kindergarten. Hard to envision because that is so far from the reality? Anyway, thinking about the should-have-beens is not all that productive.
So I will vow to live in the present as best as I can. I like the school that he will be attending. I am looking forward to a good experience and positive changes that I see happening with this transition. I will drop off my "big kids" at the neighborhood school and I will focus on them and their teachers and classmates. But I will not be stealing a glance down the kindergarten hall. And no, I don't want to hear how upset you are about how your kid didn't win the teacher lottery or didn't get to be classmates with his best friend. Think about it.
Ben is going to start Kindergarten in a couple weeks. It's big and it's no big deal, at the same time. I generally try not to over-think things like this. But it's certainly not lost on me that every other 5 year old that I know is gearing up to go to our neighborhood school.
Literally, the school is in our neighborhood- the neighborhood that on that fateful day in Dec 2004 I brought a tiny 7lb perfectly healthy newborn home from the hospital. Then we did the playgroups and picnics and the birthday parties. We even tried the preschool that Ben's older sister and brother attended. I don't have to tell you how that ended, but I will share that it was a painful few years watching those babies and toddlers fly by him. And then watching kids years his junior pass him.
I'd like to say I'm over it, but of course, I'm no where near over it. The pain doesn't really diminish, it just changes. Now it is hard to even imagine how things should have been- what it would feel like if Ben were going to that school and we were sitting by the mailbox to find out who his teacher will be and how many classmates we know. And he'd be talking. And I'd still be talking to those other parents about all-things-kindergarten. Hard to envision because that is so far from the reality? Anyway, thinking about the should-have-beens is not all that productive.
So I will vow to live in the present as best as I can. I like the school that he will be attending. I am looking forward to a good experience and positive changes that I see happening with this transition. I will drop off my "big kids" at the neighborhood school and I will focus on them and their teachers and classmates. But I will not be stealing a glance down the kindergarten hall. And no, I don't want to hear how upset you are about how your kid didn't win the teacher lottery or didn't get to be classmates with his best friend. Think about it.
Monday, February 8, 2010
Autism: God, seriously WTF?
I swear to you that if one more person tells me that God gave me an autistic child for a reason, I will go batshit crazy. That makes absolutely no sense to me. I'm not going to get philosophical about it, but suffice to say (I believe) not everything has to have a reason or higher purpose. I consider my religiosity to be in the moderate to severe range. ;) I live a prayerful life, I try to act in a Christian manner, I was born and raised and still am a practicing Catholic. So how does it all fit? I really don't know. Whole books have been written on the topic of God and Autism. Not that I've read them, and I probably won't get around to it. (By the way, does it scare anyone else that there is a whole bookcase devoted to Autism books in Borders?)
I have asked the question "why?" many times but usually it's because I really want the answer so I can help Ben get better. Very rarely have I entertained the "why me? why ben? why us?" questions. I don't feel that I need an answer to that. But I still am reserving my right to pity parties.
I have asked the question "why?" many times but usually it's because I really want the answer so I can help Ben get better. Very rarely have I entertained the "why me? why ben? why us?" questions. I don't feel that I need an answer to that. But I still am reserving my right to pity parties.
Saturday, February 6, 2010
What does it take to get a little respect? Where respect equals alarm.
Here is a comment I posted on a story about young boy with autism who was not able to access necessary and life-saving treatment for his medical condition. Disgusting. What if this was a kid with cancer that was sitting in that chair waiting for his treatment for over a week?
Here’s a big question: Is this what it takes? What does it take for people to start panicking? Autism is a national health emergency. This kid had public insurance, health care reform won’t stop this from happening. This is about autism and how in 15 years there won’t be anywhere for our kids to go. The federal and state governments cannot handle supporting the ever increasing numbers of people with autism. Scientists and doctors continue to feign exasperation while doing million dollar eye gaze studies, meanwhile our numbers are exploding out of control. I will say again what I’ve said many times before- I support research into causes, prevention, treatment, and potentially a cure for this devastating medical disease that literally stole my son’s life away. Don’t misunderstand, I will continue to advocate for services and supports- my child will certainly need those forever. But only focusing on supports and services is like attempting to stop up the new orleans levees with bubble gum.
Autism organizations need to get real, get out there and start flipping out about these numbers. ASNC hasn’t even changed its website to reflect the latest numbers. We should be out there shouting it from the rooftops. We should bring our kids. We should tell people- autism is not a psychiatric condition- it is a multi-system illness that deserves dedicated wings of hospitals to treat. True autism insurance reform is meaningless unless we can have treatments that help our kids get better. (Though I’m disgusted daily that my husband works for UNC hospitals and the insurance they provide does not cover evidence-based treatments for my son’s medical condition.)
No, I refuse to support more tax increases. I did that last year and they paraded our kids around saying “we need to help poor people with disabilities blah blah blah” and then they slammed our community with the biggest hit. Until these legislators can show some more fiscal responsibility to fund things that matter, then I will not support me paying more when people with disabilities get less.
Tuesday, January 26, 2010
This ain't Holland.
I had to subtitle the blog this. If you've ever had a special needs child, you know what I'm talking about. This dreaded poem. Don't ever send me this poem and tell me that having a child with autism is "just different".
Ben was diagnosed when he was 23 months old- it was scary, for sure, but I thought we could just get the recommended therapies and all would be well. Four months later, it all hit me like a two ton pile of bricks. Previously his main symptom was developmental delays- things that he did not do- no talking, no pointing, little joint attention. But when the stimming and hand flapping started, I lost it. I brought him to the doctor sobbing asking for help. (To be fair, it was not his regular doc that we saw that day, so to her I'm just a hysterical mother.) She was sweet and kind but she said that having a child with special needs is "just different" and that I needed to look at the bright side- he was healthy. And maybe I should think about taking some meds (for myself!) She ended the visit with saying that there is a poem about raising a special needs child. I already knew about this poem because I have a degree in psychology and had previously worked with families- heck I probably handed it out to some poor unsuspecting mom. I went home that day to google the poem and read it again. The optimist in me felt so much better. I could do different!
Three years later, I'm pretty sure this is nothing like Holland. I still have a good outlook on life. I'm still an optimist. I still believe people are generally good. I still have lots of hope for the future. I still believe my son is awesome in many ways. I adore his quirks and his smile and I love him to the depths of the ocean and up to the moon just the same as I do my other two children. But mothering a child with autism is 5 billion times harder than raising a child with no autism. It is not just different, it is really really hard.
Ben was diagnosed when he was 23 months old- it was scary, for sure, but I thought we could just get the recommended therapies and all would be well. Four months later, it all hit me like a two ton pile of bricks. Previously his main symptom was developmental delays- things that he did not do- no talking, no pointing, little joint attention. But when the stimming and hand flapping started, I lost it. I brought him to the doctor sobbing asking for help. (To be fair, it was not his regular doc that we saw that day, so to her I'm just a hysterical mother.) She was sweet and kind but she said that having a child with special needs is "just different" and that I needed to look at the bright side- he was healthy. And maybe I should think about taking some meds (for myself!) She ended the visit with saying that there is a poem about raising a special needs child. I already knew about this poem because I have a degree in psychology and had previously worked with families- heck I probably handed it out to some poor unsuspecting mom. I went home that day to google the poem and read it again. The optimist in me felt so much better. I could do different!
Three years later, I'm pretty sure this is nothing like Holland. I still have a good outlook on life. I'm still an optimist. I still believe people are generally good. I still have lots of hope for the future. I still believe my son is awesome in many ways. I adore his quirks and his smile and I love him to the depths of the ocean and up to the moon just the same as I do my other two children. But mothering a child with autism is 5 billion times harder than raising a child with no autism. It is not just different, it is really really hard.
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