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.
Saturday, April 2, 2011
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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