It's Halloween time. The teens in the homeschool group had a dance last night, and it was difficult to look at the pictures people were posting of their kids. We've recently stopped going to the homeschool park day due to social issues David had been having with the kids. The teen years are difficult enough; for teens with autism/aspergers, they can be truly horrifying.
David is now in David is now in a Social Skills group where I'm hoping he can learn some social skills & defenses before we go back to park day. He mentioned missing park day the other day: I asked him what he missed. He said he missed seeing his "true" friends. I asked him to name those friends, and he named off most of the park day teens - a good 10 or 15 people. Then I asked him to name those kids who were still in contact with him; those that called or e-mailed him. He came up with 3 names: one who doesn't even attend park day anymore (except for holidays) due to returning to public school, and one who comes to park day sporadically but attends another class with him. The last one attends park fairly regularly, and also e-mails him, but doesn't really hang out with him at park anymore. These are the nice ones.
As for the other 'true' friends, one girl, who he really enjoys talking with, intentionally gave him the wrong e-mail address, twice. One lied & said she didn't e-mail or Facebook, yet I see her on Facebook with others. One boy intentionally eggs him on to get a reaction, whether it's outrageous statements that freak him out, or telling him to draw pornographic comics. These are his 'true' friends. Before we stopped going to park day, the best I could hope for was that they would ignore him.
What really gets me is that for the most part, these are the kids that, if they were in public school, would be the ones ostracized & picked on for their weirdness & behaviors, but because they have banded together in a different environment, they are the ones doing the picking.
I tried talking to some of the moms previously. Unfortunately, most of them are oblivious to their kids behaviors when out of sight. One mom swears that her child has actively tried to include David in things, because her child told her that, yet I have a photograph of that child sitting next to my son, leaning away from him & ignoring him as David tries to engage him in conversation. One time we went to the mall with a group of teens, and maybe it was a coincidence, but at the same moment that David sat down with the teens, they got up as a whole (about 10 - 15 of them) and left to go do various things, leaving David alone at the table.
I was sitting with the moms at the opposite table, who also observed this, and the moms rationalized this with, "Oh, they just didn't notice him" (my son is 6 feet tall and 190 lbs and one of the least 'unnoticeable' person around), and "They were just busy with their own stuff; they didn't mean anything by it," (really? Not one person in a group of 10-15 kids noticed they were leaving a solitary kid alone at the table?) and they finished with "Why doesn't David go over to that other table of boys & join them?" (There was a separate table with 3 boys at it). I got up and said, "Why? So he can be rejected again?" and retrieved my dejected son & left.
Now I know my son is not the easiest person to hang around with. He has autism. He fixates on certain favored topics of conversation long past it's expiration date. He doesn't know how to join in a topic he's unfamiliar or uninterested in. But he is kind. He is a sweet kid who would never intentionally hurt anyone; wouldn't know how to provoke a reaction from someone for his pleasure or to impress someone else, and doesn't have the social skills to lie to fit in. He just doesn't have the social skills to deal with the precarious nature of relationships in the teen years.
As mothers, it is our job to raise our children and guide them into becoming reasonable human beings. Some of the moms seem to have a theory that they should let their kids work out their conflicts on their own. In theory, I see their reasoning behind this, but in reality, situations where children who parent themselves without guidance from adults turn into scenes from "Lord of the Flies". As parents, we need to guide our children in how to treat other people. Everyone who's had a toddler knows that you have to teach them to share - they are not giving by nature. Without guidance, our kids will continue to be selfish toddlers, only caring about their inner circle and how the world reacts to them. We can hope they model our good behavior, but that is not always the case.
One of the best things we can do is not be ignorant of our children's behaviors toward others. Yes, we all want to believe the best of our children, but we do them no favors by ignoring their faults. My son has social skills issues - I recognize his faults, and I have him enrolled in a special class so he can learn how to interact with others. When he overreacts, he can scare people, because he's loud & big & when frustrated, can scream like a 2 year old, which is completely socially inappropriate. I try not to rationalize his behaviors by using autism as an excuse - he needs to learn to interact with people if he's going to live in this world, and I am going to do my best to help him learn how.
What makes this difficult is when other parents try to excuse or rationalize their children's behaviors. Are they just so happy that their kids aren't in the picked on group that they don't mind if their kids are now the bullies & mean kids? Are they really that oblivious to their kids behaviors? Or is it that if they recognize those behaviors in their kids, then they would have to realize they're failing at some aspect of parenting? I don't know. All I know is that it is heartbreaking to watch when your child is the one who's never included and thinks of everyone as his friend when in reality, they are not.
Sunday, October 30, 2011
Wednesday, July 20, 2011
Down
Been a tough week. Been a tough life. Can't even type without the damned cat's butt in my face. Sigh. I just don't know what to do. I have no will to do anything - it's an effort just to get out of bed. I'm drained. Every time I say I don't want to fight anymore, life throws something at me that needs fighting, and I'm the only one that picks up the gloves, cause if I don't, no one else does, and nothing happens (at best) and at worst, things fall even more apart.
I don't get it. Why am I not entitled to my nervous breakdown? Because it doesn't fit into the damned schedule & no one will take care of the kids unless I can tell them the breakdown will last less than 24 hours. I'm tired. I'm tired of being super-mom, and I'm not even good at that. I feel like a crappy mom because I have even less patience since I have less help; I break into tears when I drop something...
I guess it's true, what the article said: moms who take care of special needs kids often have the same level of stress as combat soldiers. I tried to put in a link, but it's not working, so here's the address; you can cut & paste: http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
I think the daily experience of having to be acutely aware of where my eloping son is 24 hours a day would be comparable to a soldier having to be on alert at all times, although not for the same reasons, of course. Not being able to open my windows due to the padlocks that keep my son safely inside is akin to us living in a lockdown institution. Even the group homes for autistic children are not allowed to have those kind of locks on doors & windows due to safety reasons. Geez. At least soldiers have a set tour of duty; they know in 3 years, their job is done. I don't even have that.
I don't get it. Why am I not entitled to my nervous breakdown? Because it doesn't fit into the damned schedule & no one will take care of the kids unless I can tell them the breakdown will last less than 24 hours. I'm tired. I'm tired of being super-mom, and I'm not even good at that. I feel like a crappy mom because I have even less patience since I have less help; I break into tears when I drop something...
I guess it's true, what the article said: moms who take care of special needs kids often have the same level of stress as combat soldiers. I tried to put in a link, but it's not working, so here's the address; you can cut & paste: http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
I think the daily experience of having to be acutely aware of where my eloping son is 24 hours a day would be comparable to a soldier having to be on alert at all times, although not for the same reasons, of course. Not being able to open my windows due to the padlocks that keep my son safely inside is akin to us living in a lockdown institution. Even the group homes for autistic children are not allowed to have those kind of locks on doors & windows due to safety reasons. Geez. At least soldiers have a set tour of duty; they know in 3 years, their job is done. I don't even have that.
Friday, May 13, 2011
"The Secret" is A Lie
Yeah. No amount of positive thought is going to change the fact that my children have autism. I do understand that having a positive attitude can help a person get through the crap, but it is crap to say that a person brings crap on themselves by not having a positive attitude.
Mikey is low functioning, and as he goes through adolescence, has increasing frustration, and his current outlet is to bite holes in his shirt. It has gone from biting holes to completely ripping the shirt in half. Now, how am I supposed to put a positive spin on this? Hmmm, perhaps Mikey has a future in stripping - I know I'd pay good money to see a grown man rip his shirt off with his teeth. :-) (trying to be positive, here...) All kidding aside, Mikey is not a grown man - he is a struggling teen with autism, without the verbal skills to express himself. He needs help, and so do I; something a bit more concrete than, "You need a better outlook."
As I found out, asking the Regional Center for more help is pointless. They called Child Protective Services on me. I don't know this for a fact, as CPS can't tell you who reported you, but one of the incidents with Mikey happened the day before Regional Center came out to 'see how they could help', and were the only ones who knew about the other incidents. I don't know what they were trying to accomplish - to make a very long story very short, the lady from CPS was very nice; after the investigation was over, she said that she had no idea why she was called, disabled kids often had these issues & you can't predict them, and I showed that every time there was some kind of incident, I took steps to deal with it, and they were closing the case.
I am assuming that Regional Center was trying to shift the responsibility to someone else, because when they were here, Regional stated that maybe a behavioral respite group would be a good idea. I agreed, the lady was supposed to look into it, and I never heard another thing about it, nor has the behavioral group who provides Mikey with 8 hours of therapy per week. Was Regional trying to slip out of their responsibility? I don't know. Here is the Regional Center of Orange County's Mission Statement:
Regional Center of Orange County, within the spirit and mandate of the Lanterman Act, shall assist persons with developmental disabilities, and their families, in securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity and openness to innovation.
So, calling CPS, making one of my boys subject to reliving an experience he's embarrassed about & has already dealt with years ago, making me feel like an incompetent mom, NOT "securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity" but instead shifting the responsibility elsewhere... yeah.
The only positive thing that has happened regarding all of this is that I have been vindicated by CPS & RCOC can't shift the responsibility again. When I'm more calm about the whole experience (when will that be?) I have a mind to call the lady from RCOC & tell her that the next people I tell my story to will be the newspapers - I wonder if we'll get our services then?
It's crappy. The whole bloody system is crappy. I stopped having RCOC come to the kids IEP's because they & the school district would spend most of the time fighting over whose responsibility it was to provide services, and no one would do anything. I'm tired of having to fight tooth & nail for services my kids are entitled to from both the school district and RCOC by LAW, but don't get unless you take the agencies to due process/fair hearing. It's WRONG. I understand everyone's broke, the state is broke, the agencies are broke.... but the administrators of those agencies are still pulling in their 6 figure incomes (not being specific regarding certain people here, but all government employees salaries are available to the public by request).
I'm tired of excuses. From the schools, from the agencies... look, I'm a single mom, and I have 2 children with autism. I take full responsibility for choosing a crappy husband who then left us 2 months after the boys were diagnosed. That bad decision of mine does not negate the responsibility of these agencies set up to help disabled children. I'm sorry I'm not 2 people. I'm one mom, who has given up any shred of a normal life in hopes that her kids may have one someday, and it sucks when I'm beaten down at every step by the agencies who were designed to help just those kinds of kids. And no amount of positive thinking is going to change a damn thing.
June 7, 2011
Update: It wasn't RCOC. My gods, it was ACES. The behavioral group who has worked with us for years... talk about a feeling of betrayal. Been dealing with these feelings for a while now - since finding out it was ACES who reported us, I went first from feeling betrayed, to wondering if this group who has worked with us for years thinks I'm a crappy enough mom to report me, then maybe I AM a crappy mom, to wondering why a group who has worked with us for so many years still doesn't have a clue as to Mikey's proprioceptive skills & should know he was never in any danger because he can't squeeze a bottle to spray anything out in the first place.
So the group I've reported every behavioral mishap to, in hopes they can help fix the behaviors that have happened, was the one who reported the behaviors. How the hell is that supposed to help??? It's caused more issues and hasn't helped a damn thing. First of all, how am I ever supposed to trust any group out there to 'help' us, if I'm afraid to tell them what's actually going on? And so I find myself more alone than ever.
Mikey is low functioning, and as he goes through adolescence, has increasing frustration, and his current outlet is to bite holes in his shirt. It has gone from biting holes to completely ripping the shirt in half. Now, how am I supposed to put a positive spin on this? Hmmm, perhaps Mikey has a future in stripping - I know I'd pay good money to see a grown man rip his shirt off with his teeth. :-) (trying to be positive, here...) All kidding aside, Mikey is not a grown man - he is a struggling teen with autism, without the verbal skills to express himself. He needs help, and so do I; something a bit more concrete than, "You need a better outlook."
As I found out, asking the Regional Center for more help is pointless. They called Child Protective Services on me. I don't know this for a fact, as CPS can't tell you who reported you, but one of the incidents with Mikey happened the day before Regional Center came out to 'see how they could help', and were the only ones who knew about the other incidents. I don't know what they were trying to accomplish - to make a very long story very short, the lady from CPS was very nice; after the investigation was over, she said that she had no idea why she was called, disabled kids often had these issues & you can't predict them, and I showed that every time there was some kind of incident, I took steps to deal with it, and they were closing the case.
I am assuming that Regional Center was trying to shift the responsibility to someone else, because when they were here, Regional stated that maybe a behavioral respite group would be a good idea. I agreed, the lady was supposed to look into it, and I never heard another thing about it, nor has the behavioral group who provides Mikey with 8 hours of therapy per week. Was Regional trying to slip out of their responsibility? I don't know. Here is the Regional Center of Orange County's Mission Statement:
Regional Center of Orange County, within the spirit and mandate of the Lanterman Act, shall assist persons with developmental disabilities, and their families, in securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity and openness to innovation.
So, calling CPS, making one of my boys subject to reliving an experience he's embarrassed about & has already dealt with years ago, making me feel like an incompetent mom, NOT "securing and coordinating those services and supports which maximize opportunities and choices for living, working, learning and recreating in the community and which result in consumer satisfaction and quality services which stress human dignity" but instead shifting the responsibility elsewhere... yeah.
The only positive thing that has happened regarding all of this is that I have been vindicated by CPS & RCOC can't shift the responsibility again. When I'm more calm about the whole experience (when will that be?) I have a mind to call the lady from RCOC & tell her that the next people I tell my story to will be the newspapers - I wonder if we'll get our services then?
It's crappy. The whole bloody system is crappy. I stopped having RCOC come to the kids IEP's because they & the school district would spend most of the time fighting over whose responsibility it was to provide services, and no one would do anything. I'm tired of having to fight tooth & nail for services my kids are entitled to from both the school district and RCOC by LAW, but don't get unless you take the agencies to due process/fair hearing. It's WRONG. I understand everyone's broke, the state is broke, the agencies are broke.... but the administrators of those agencies are still pulling in their 6 figure incomes (not being specific regarding certain people here, but all government employees salaries are available to the public by request).
I'm tired of excuses. From the schools, from the agencies... look, I'm a single mom, and I have 2 children with autism. I take full responsibility for choosing a crappy husband who then left us 2 months after the boys were diagnosed. That bad decision of mine does not negate the responsibility of these agencies set up to help disabled children. I'm sorry I'm not 2 people. I'm one mom, who has given up any shred of a normal life in hopes that her kids may have one someday, and it sucks when I'm beaten down at every step by the agencies who were designed to help just those kinds of kids. And no amount of positive thinking is going to change a damn thing.
June 7, 2011
Update: It wasn't RCOC. My gods, it was ACES. The behavioral group who has worked with us for years... talk about a feeling of betrayal. Been dealing with these feelings for a while now - since finding out it was ACES who reported us, I went first from feeling betrayed, to wondering if this group who has worked with us for years thinks I'm a crappy enough mom to report me, then maybe I AM a crappy mom, to wondering why a group who has worked with us for so many years still doesn't have a clue as to Mikey's proprioceptive skills & should know he was never in any danger because he can't squeeze a bottle to spray anything out in the first place.
So the group I've reported every behavioral mishap to, in hopes they can help fix the behaviors that have happened, was the one who reported the behaviors. How the hell is that supposed to help??? It's caused more issues and hasn't helped a damn thing. First of all, how am I ever supposed to trust any group out there to 'help' us, if I'm afraid to tell them what's actually going on? And so I find myself more alone than ever.
Tuesday, April 12, 2011
My crime?
Wanting a shower. After 3 days.
David has gone to Philadelphia on a historical trip with Grandma Donna for a week. Mikey is home with me. I got a shower Saturday morning before Mikey woke up. Sunday was me & Mikey all day - never a break, and by bedtime, too exhausted. Monday morning was the morning I woke up & found that Mikey had decided to be an artist by using himself & his bed as a canvas. This morning, that was it - shower was no longer optional. I guess it was my fault - I didn't check first to see if there were any open boxes of cereal (Mikey has difficulty opening the liners). Suffice it to say that when I got out of the shower, Mikey had somehow gotten the bag open: all over the kitchen. I'm still not sure if any actually landed in his bowl. Sigh.
David has gone to Philadelphia on a historical trip with Grandma Donna for a week. Mikey is home with me. I got a shower Saturday morning before Mikey woke up. Sunday was me & Mikey all day - never a break, and by bedtime, too exhausted. Monday morning was the morning I woke up & found that Mikey had decided to be an artist by using himself & his bed as a canvas. This morning, that was it - shower was no longer optional. I guess it was my fault - I didn't check first to see if there were any open boxes of cereal (Mikey has difficulty opening the liners). Suffice it to say that when I got out of the shower, Mikey had somehow gotten the bag open: all over the kitchen. I'm still not sure if any actually landed in his bowl. Sigh.
Saturday, April 2, 2011
I'm Lost
I've lost myself. In trying to make an environment that is calm for my boys, I've lost the things I used to love to do. Mostly due to Mikey's issues (I'm assuming they're sensory, but maybe he just doesn't like my stuff), I've stopped playing my own music, whether cds or the radio (certain songs set him off), stopped playing my guitar (although he loves listening to his music, he will scream if anyone plays the acoustic guitar), I don't watch any tv programs I like in the living room, again because you never know which ones or what part will set Mikey off, and frankly, for the past 14 years, a non-screaming Mikey has always been worth it. Those are just a few examples.
But 14 years have passed, and I'm just starting to realize I have given up just about everything that was me so that they can be them. All my artistic endeavors are relegated to the studio outside, which I can't access when Mikey is around (just what I need - a kid with permanently tie dyed skin). I have my books, but try to concentrate on the page you're reading while Mikey is engaging in his endless nonsensical monologue. I've lived my life in bits and spurts for the past 14 years, and I don't know who I am anymore. When I get some free time, a few hours on a Saturday afternoon, I have no idea what I even want to do - I hate starting anything, for fear I won't have time to finish it. I know I'm lost, but I have absolutely no idea how to find myself again.
But 14 years have passed, and I'm just starting to realize I have given up just about everything that was me so that they can be them. All my artistic endeavors are relegated to the studio outside, which I can't access when Mikey is around (just what I need - a kid with permanently tie dyed skin). I have my books, but try to concentrate on the page you're reading while Mikey is engaging in his endless nonsensical monologue. I've lived my life in bits and spurts for the past 14 years, and I don't know who I am anymore. When I get some free time, a few hours on a Saturday afternoon, I have no idea what I even want to do - I hate starting anything, for fear I won't have time to finish it. I know I'm lost, but I have absolutely no idea how to find myself again.
Sunday, February 27, 2011
Dilemma: Facebook (& the internet in general) is my link to people & real life, since I cannot get out & do many of the things typical folks without rampant autism in their families can do. Without it, I would be even more isolated than I already am. The problem is that every time I get online, I am faced with friends' well meaning posts about how wonderful their lives are, how much fun they had going to this place or that, and how blessed they are to have the families they do. It just brings it all home how different & difficult my life is in comparison.
So do I continue to log in, to keep my link with the world but be constantly reminded how much my life sucks in comparison, or do I get offline & remain even more isolated than I am?
So do I continue to log in, to keep my link with the world but be constantly reminded how much my life sucks in comparison, or do I get offline & remain even more isolated than I am?
Saturday, February 19, 2011
Smileys
Looking back over my blog, I realized I use smileys way too much. Why? Am I trying to be funny & I want to make sure people get it? Am I trying to put people in a good mood? Am I (dramatic pause) trying to get a laugh so that people don't realize just how scared I am of my own life & therefore if they laugh & think I'm really ok, they won't be scared away?
Thursday, February 17, 2011
Lose it
I have been religiously logging in my daily calorie intake on a site called LoseIt.com. If the damn house elves would stop shrinking my pants, I wouldn't have to resort to such drastic measures. Unfortunately, I think I hate shopping for new clothes more than I hate limiting my calories. This does lead to some interesting quandries, though - at least once last week, if I was going to stay below my daily calorie limit, I had to decide between having something for dinner & having a couple glasses of wine. Guess which won out.
I suppose if I could just get more 'regular' exercise, I could expend more energy and therefore eat more (or drink more, as the case may be). Sadly, 'regular' is a word not known in this house. "Regular" would imply that I am setting aside a set number of minutes per day solely for my benefit.
I suppose if I could just get more 'regular' exercise, I could expend more energy and therefore eat more (or drink more, as the case may be). Sadly, 'regular' is a word not known in this house. "Regular" would imply that I am setting aside a set number of minutes per day solely for my benefit.
Wednesday, February 16, 2011
Drained
Been dealing with appointments lately - doctor, dentist, eye doctor, podiatrist, orthopedist, autism specialist... mostly for the boys, although I admit to a dentist & eye appointment in there, too. The boys both have been diagnosed with flat feet and need orthodics; seems I have flat feet too, and never knew it, & could use the orthodics, too. The doctor asked if I didn't get sore backs & legs after walking - I told him yes, but I figured I was just getting old. :-)
Did I mention all of these appointments have been within the past couple weeks, and we still have a few more to go? I thought I was being sensible by scheduling them all at once; you know, get them over with & all. Only problem is I am completely exhausted & trying to stay positive that I will have enough energy to make it to the last appointment.
One of the worst parts about raising my two teenage autistic sons by myself is that I am so completely drained all the time. I have no extra energy for the boys, let alone myself, by the time dinner rolls around. I have so many projects I'd like to start; weavings, costuming, tie dye, jewelry, but I just don't have the energy left to do anything. By the time they're in bed, I'm collapsing as well. I miss being creative. People will say, "Make the time!" I would love to have them come live my life for a week & then would love to hear where they would 'make the time'.
Did I mention all of these appointments have been within the past couple weeks, and we still have a few more to go? I thought I was being sensible by scheduling them all at once; you know, get them over with & all. Only problem is I am completely exhausted & trying to stay positive that I will have enough energy to make it to the last appointment.
One of the worst parts about raising my two teenage autistic sons by myself is that I am so completely drained all the time. I have no extra energy for the boys, let alone myself, by the time dinner rolls around. I have so many projects I'd like to start; weavings, costuming, tie dye, jewelry, but I just don't have the energy left to do anything. By the time they're in bed, I'm collapsing as well. I miss being creative. People will say, "Make the time!" I would love to have them come live my life for a week & then would love to hear where they would 'make the time'.
Thursday, February 10, 2011
House Rules
We're reading this book for our book club. It was my suggestion. I hadn't read it; someone had suggested it to me because it's about a single mom with an Asperger's son who gets accused of murder, and I'm a single mom with an Aspie son as well as one on the low functioning end of the Autism scale. We were looking for suggestions of what to read for the month, so I threw this one out there & they all agreed.
I'm really regretting it now. I'm about halfway through the book, and I honestly don't know if I can finish it. Difficult barely begins to describe how it is to read this book; to go through all the things this mom goes through; basically, I'm living all the crappy parts of my life all over again. Every raw emotion; every doubt for the future.... it just hits home way too close. I can't even write any more on this post.
I'm really regretting it now. I'm about halfway through the book, and I honestly don't know if I can finish it. Difficult barely begins to describe how it is to read this book; to go through all the things this mom goes through; basically, I'm living all the crappy parts of my life all over again. Every raw emotion; every doubt for the future.... it just hits home way too close. I can't even write any more on this post.
Tuesday, January 4, 2011
The Holidays
I don't even know where to start on this. Our holidays were both wonderful & horrible. I am extremely blessed to have a wonderful bunch of friends who accept my boys and their disability & don't freak out when they do something 'autistic'.
Let me back up a bit. A few years ago, I started a new tradition of having an open house & tamale making day on Christmas Eve, because it was just too stressful & overstimulating for the boys to go to other houses. It had once been suggested, after a crazy Christmas Eve at my mom's, that perhaps it would be better if we came later & left early. This suggestion could have simply been well meaning, but I realized that they were suggesting that I accommodate a group of neurotypical adults. Why were they not trying to accommodate the children with a disability? I figured if I had an open house, people could come celebrate with us, have some fun, make some goodies, eat some goodies, the boys would have their own environment, their own toys & stuff; everyone wins, right?
This system had some glitches; the first being one of my sisters. The first time I did this, I had some friends over when the 'family' arrived, and my sister made rude comments about why were there other people there; wasn't this supposed to be for family, etc. I was embarrassed, yet tried to smooth things over for my mom, who hates stress & wants everyone to be happy. Last year I was told that the family was coming, only to be told at the last minute they wouldn't be there at all. This year, I told mom that everyone was welcome, but there was no structure, and if friends were there, my sister would be expected to be nice. Mom said they probably wouldn't come, then. Sheesh! OH! Let me also say that my parents and one sister live about a mile away from me, but the other sisters live in Kansas & San Diego, and I don't get to see them very often. They all come to stay at mom's for Christmas.
So this year, on Christmas Eve, we had an absolutely wonderful day! Many friends came throughout the day, adults & kids of all ages, we ate & drank & made goodies & no one freaked out over anything; it was heaven. I felt loved and so did my children. There was no stress, no expectations, and no family showed up.
On Christmas Day, my boys & I opened presents & had a relaxing morning. Early in the afternoon, I took them to the other grandparents house. My ex-husband may have pulled a disappearing act & chooses to have no involvement with his kids, but his parents are wonderful with the boys and I am making sure they keep up a good relationship with them. We were all welcomed in, everyone felt comfortable, everyone was accepting and accepted.
I stayed for a few hours & then left to spend the evening with the Kelly's. This is the family of my best friend Bill, who passed away 8 years ago. They said that having me there is almost like having Bill with them again. They are a warm, loving bunch, too, and I haven't missed a Christmas visit in the past 8 years. Again, a win-win evening.
The next day, the day after Christmas, my mom called & said the family was coming over about 1:30 pm. I don't want to dwell on this - lets just say it was 2:00 before they got there and they were gone before 3:00. In fact, David looked up at one point & said, "I thought they were coming over for Christmas?" and all I could say was, "I thought so too, son." I hadn't even gotten a chance to set out any goodies before they were all taking off. My one sister even left the special picture that David had drawn just for her - good thing I found it & hid it before he saw - he would have been crushed.
One of the biggest problems with having autistic children is the isolation. Because of some of the kids' behaviors, we just can't get out & do things like other families. Hence, we end up staying home a lot. A LOT. The isolation & the loneliness can be overwhelming at times. On one side, I had a ton of wonderful friends who made all of us feel loved & special; on the other, I had my immediate family make us feel like we were an afterthought & something to be 'gotten through' so they could get back to 'their' holiday.
I did talk about it with my mom - she tried to rationalize away their behavior by saying, "They just didn't think." I said that that was the problem - I had family that didn't even think of us, but friends who made sure we weren't alone. Mom said that next year will be different. I said that it will, because we're simply not going to expect anything from the family; therefore we won't be disappointed. I am willing to subject myself to a certain amount of my family's behaviors, but I will NOT tolerate them making my children feel like an afterthought.
The end of this year has brought about a lot of big changes for me - certain long time 'friends' have disappeared from my life, whereas other friends have come to the forefront as 'real' friends. It has been a year of re-evaluation, and a lot of changes; some extremely difficult, but for the better. I guess Richard Bach was right - in his book "Illusions", he writes, "The bond that links your true family is not one of blood, but of respect and joy in each other's life. Rarely do members of one family grow up under the same roof."
Oh, and a last minute thought on the isolation: Just because we know we won't be able to come to your holiday parties doesn't mean we wouldn't like to be invited anyway. Sometimes it IS the thought that counts.
Let me back up a bit. A few years ago, I started a new tradition of having an open house & tamale making day on Christmas Eve, because it was just too stressful & overstimulating for the boys to go to other houses. It had once been suggested, after a crazy Christmas Eve at my mom's, that perhaps it would be better if we came later & left early. This suggestion could have simply been well meaning, but I realized that they were suggesting that I accommodate a group of neurotypical adults. Why were they not trying to accommodate the children with a disability? I figured if I had an open house, people could come celebrate with us, have some fun, make some goodies, eat some goodies, the boys would have their own environment, their own toys & stuff; everyone wins, right?
This system had some glitches; the first being one of my sisters. The first time I did this, I had some friends over when the 'family' arrived, and my sister made rude comments about why were there other people there; wasn't this supposed to be for family, etc. I was embarrassed, yet tried to smooth things over for my mom, who hates stress & wants everyone to be happy. Last year I was told that the family was coming, only to be told at the last minute they wouldn't be there at all. This year, I told mom that everyone was welcome, but there was no structure, and if friends were there, my sister would be expected to be nice. Mom said they probably wouldn't come, then. Sheesh! OH! Let me also say that my parents and one sister live about a mile away from me, but the other sisters live in Kansas & San Diego, and I don't get to see them very often. They all come to stay at mom's for Christmas.
So this year, on Christmas Eve, we had an absolutely wonderful day! Many friends came throughout the day, adults & kids of all ages, we ate & drank & made goodies & no one freaked out over anything; it was heaven. I felt loved and so did my children. There was no stress, no expectations, and no family showed up.
On Christmas Day, my boys & I opened presents & had a relaxing morning. Early in the afternoon, I took them to the other grandparents house. My ex-husband may have pulled a disappearing act & chooses to have no involvement with his kids, but his parents are wonderful with the boys and I am making sure they keep up a good relationship with them. We were all welcomed in, everyone felt comfortable, everyone was accepting and accepted.
I stayed for a few hours & then left to spend the evening with the Kelly's. This is the family of my best friend Bill, who passed away 8 years ago. They said that having me there is almost like having Bill with them again. They are a warm, loving bunch, too, and I haven't missed a Christmas visit in the past 8 years. Again, a win-win evening.
The next day, the day after Christmas, my mom called & said the family was coming over about 1:30 pm. I don't want to dwell on this - lets just say it was 2:00 before they got there and they were gone before 3:00. In fact, David looked up at one point & said, "I thought they were coming over for Christmas?" and all I could say was, "I thought so too, son." I hadn't even gotten a chance to set out any goodies before they were all taking off. My one sister even left the special picture that David had drawn just for her - good thing I found it & hid it before he saw - he would have been crushed.
One of the biggest problems with having autistic children is the isolation. Because of some of the kids' behaviors, we just can't get out & do things like other families. Hence, we end up staying home a lot. A LOT. The isolation & the loneliness can be overwhelming at times. On one side, I had a ton of wonderful friends who made all of us feel loved & special; on the other, I had my immediate family make us feel like we were an afterthought & something to be 'gotten through' so they could get back to 'their' holiday.
I did talk about it with my mom - she tried to rationalize away their behavior by saying, "They just didn't think." I said that that was the problem - I had family that didn't even think of us, but friends who made sure we weren't alone. Mom said that next year will be different. I said that it will, because we're simply not going to expect anything from the family; therefore we won't be disappointed. I am willing to subject myself to a certain amount of my family's behaviors, but I will NOT tolerate them making my children feel like an afterthought.
The end of this year has brought about a lot of big changes for me - certain long time 'friends' have disappeared from my life, whereas other friends have come to the forefront as 'real' friends. It has been a year of re-evaluation, and a lot of changes; some extremely difficult, but for the better. I guess Richard Bach was right - in his book "Illusions", he writes, "The bond that links your true family is not one of blood, but of respect and joy in each other's life. Rarely do members of one family grow up under the same roof."
Oh, and a last minute thought on the isolation: Just because we know we won't be able to come to your holiday parties doesn't mean we wouldn't like to be invited anyway. Sometimes it IS the thought that counts.
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