One of the most difficult aspects of having a disabled child is the isolation. I have never been a social butterfly but I never imagined I would have pretty much zero involvement in the community. This has been on my mind lately because Maya is getting to a point where whe wants to be out and about, meeting people and socializing. I had one of those magical days yesterday when Sam had school and I didn't have work. Maya and I took a walk over the to local park and she had a blast. She played alone at first and then with an older girl who took an interest in her. This is something I cannot do when Sam is home. The park is not fenced in and I can't rely on him to stay within a safe distance of me. Plus, there tend to be a lot of wrappers and straws on the ground and Sam has a compulsion to pick them up. If the weather has been damp, the park has huge puddles and Sam makes a beeline for them. He will happily jump in them and drink the muddy water.
I have been looking for a church lately. I miss the routine of going on sundays and feeling connected to a community. I heard about a Catholic church that is starting a "differently-abled" mass. I am not Catholic, and in fact take issue with a number of things in the Catholic church, but I am open at this point. I don't have to take communion. Unfortunately, their idea seems to be to have a separate mass during which people with disabled kids can attend with their children. Sam can't sit through mass. He would splash in the holy water, chew on the books, and all kinds of other things.
I contacted two UCC churches in the area since that is the denomination in which I grew up. Pastors from both churches responded to me quickly. They were both very open to having me come see the church and meet the congregation. Neither has a special needs program or any kids like Sam so while I will probably go and look, I don't know if either will work out. WHat do other special needs families do? Do they just stay home and remain invisible? I have asked around and not found any churches with accomodations for kids with severe developmental disabilities. There is a Jewish temple a couple of towns over offering to work with kids IEPs in the religious religious school classrooms but as with everything, I think Sam's severity is more than most people expect. He cannot be in a class with typical kids. And I am not Jewish - I am open for the sake of community but I would prefer not to change religion.
What I really want to find is a church with a nursery-style room for developmentally disabled kids with bean bags, tramoplines and basic sensory toys. Sam could "play while I sit through the service. I don't think it exists around here.
I am at a loss on this one. I realize Sam will not understand anything about church or religion but I don't like the idea that I HAVE to leave him at home and just take Maya. I DO want Maya to have exposure to religious education. I firmly believe that religion must come from within though and it will be completely her choice if she chooses to remain part of a church once she is old enough to decide. I just think it is important to learn the history, the stories and the traditions while one is young.
If anyone reading has a low functioning child, what kind of community activities have you found? or do you just stay home like we do?
Saturday, September 11, 2010
Friday, September 10, 2010
Next Steps
Thank you for the comments. I can't tell you how nice it is to get such thorough responses.
This week has only gotten worse. I increased Sam's melatonin to 4mg every night and I added magnesium. He still will not go to sleep on his own but he falls asleep quickly. Then he wakes multiple times during the night in a panic that I am not there. With the melatonin increase, he falls asleep again more quickly (before he often would NOT fall back asleep or take hours to do so) but he wakes up again an hour or so later looking for me again. Now, I suppose I could just sleep eith him but I am not willing for a number reasons. With the way Sam arranges himself on his bed, the only way I can lie down is to curl up at the foot of the bed. That is not a great way to rest night after night.
My next step if to try time release melatonin. I also contacted the behaviorist at Sam's school to see if she has any suggestions. If neither of those steps work, I may have to find a way to safely secure Sam in his room and let him cry. I know he CAN sleep on his own and I suspect this is a behavioral phase. It sounds mean but cutting him off is generally the best strategy with him - he doesn't "get" gradual change. I don't know what we will do with Maya those nights but I would rather have her sleep ruined for a few nights than mine ruined for months or years. If we still have no luck I will consider sleep meds. Cross your fingers for us.
This week has only gotten worse. I increased Sam's melatonin to 4mg every night and I added magnesium. He still will not go to sleep on his own but he falls asleep quickly. Then he wakes multiple times during the night in a panic that I am not there. With the melatonin increase, he falls asleep again more quickly (before he often would NOT fall back asleep or take hours to do so) but he wakes up again an hour or so later looking for me again. Now, I suppose I could just sleep eith him but I am not willing for a number reasons. With the way Sam arranges himself on his bed, the only way I can lie down is to curl up at the foot of the bed. That is not a great way to rest night after night.
My next step if to try time release melatonin. I also contacted the behaviorist at Sam's school to see if she has any suggestions. If neither of those steps work, I may have to find a way to safely secure Sam in his room and let him cry. I know he CAN sleep on his own and I suspect this is a behavioral phase. It sounds mean but cutting him off is generally the best strategy with him - he doesn't "get" gradual change. I don't know what we will do with Maya those nights but I would rather have her sleep ruined for a few nights than mine ruined for months or years. If we still have no luck I will consider sleep meds. Cross your fingers for us.
Friday, September 3, 2010
How do I Bribe the Sandman?
We are back in territory I had hoped we left long ago - sleepless night. Sam used to wake frequently as a baby but he went back to sleep pretty easily. He also went through phases when he would sleep through perfectly. Just before he was 2 1/2, he began having a lot of trouble sleeping. He insisted on my staying with him while he fell asleep. Then he would wake in the night and want the same thing. Eventually he stopped going back to sleep for HOURS. At the time I was pregnant with Maya. I was beyond tired. One night I never even go to go to sleep because he woke so often. Then I taught the whole day. At that point I decided Sam had to cry it out. It worked like a charm. THe first night was tough but by night 4 he was right to bed on his own. He still woke in the night but he stayed in his room and on his bed until he fell back asleep.
At 3, Sam began waking more and more. He would stim on his bed for hours and look like a zombie the next day. On occasion he would get out of bed and I would have to settle him back down but usually if I repeated the bedtime routine, he would go back to bed. Even if he couldn't sleep, he would stay in his room. At that point, Maya developed sleep issues. It was pretty much my fault. When I went back to work, my milk supply dropped (for my body, pumpin gjust doesn't keep my milk flowing the same way nursing does. Plus, as a teahcer, I can't always take a break and pump when I would normally nurse). I insisted on nursing at night because I wanted to give Maya all the health benefits for as long as possible. Since she wasn't getting a great feeding from me in the evenings, she would wake a feed at night. She continued long after she was weaned and really only started sleeping well a few weeks ago.
I don't remember exactly when I started Sam on melatonin but it brough some peace to his night. Every so often he had a rough night but not with the same regularity we used to see.
At the beginning of the summer Sam began waking again despite the melatonin. It sook my nerves and sent me into a panic - if the melatonin stops working will we have to turn to a medication to get some sleep? When we did the Adderall experiment, things seemed to even out. He slept better in July. Of course then we had the side effects and stopped the Adderall. The first few days off he still slept fine. Just over a week ago he began to have some problem. he went to sleep well but woke sometime between 2 and 4wanted my company while he stimmed for a few hours. Most time he wouldn't go back to sleep.
This past week Sam also began having trouble falling asleep. He screams if I leave the room before he falls asleep. Luckily this seems to only take 20 minutes or so. Then he wakes around 1 or 2 and cries for me to come back. He then proceeds to NOT sleep until morning when he falls back asleep for a couple of hours. I have to go to work at that point (or take care of Maya depending on the day) and try to function feeling like a zombie.
I don't know why this is happening (besides the obvious "autism" answer. Has he built up a tolerance to melatonin? Has being out of a routine (no school in August) been too much for him? Is he going through something physically that he can't express? I just don't know. What I do know is that I can't do this much longer. I need to be able to do my job well and Sam needs to be able to start school again next week with the ability to learn to the best of his ability. I don't know what next steps to take. Slow release melatonin? give it time and see if he does better once school starts? Beg for Clonodine? I don't know but I need some kind of plan. Letting him "cry it out" is no longer an option because he can get out of his room (climb the gate).
Any suggestions are welcome.
-We have a bedtime routine
-he takes 3-4 mg of melatonin
-he is still on Risperdal
At 3, Sam began waking more and more. He would stim on his bed for hours and look like a zombie the next day. On occasion he would get out of bed and I would have to settle him back down but usually if I repeated the bedtime routine, he would go back to bed. Even if he couldn't sleep, he would stay in his room. At that point, Maya developed sleep issues. It was pretty much my fault. When I went back to work, my milk supply dropped (for my body, pumpin gjust doesn't keep my milk flowing the same way nursing does. Plus, as a teahcer, I can't always take a break and pump when I would normally nurse). I insisted on nursing at night because I wanted to give Maya all the health benefits for as long as possible. Since she wasn't getting a great feeding from me in the evenings, she would wake a feed at night. She continued long after she was weaned and really only started sleeping well a few weeks ago.
I don't remember exactly when I started Sam on melatonin but it brough some peace to his night. Every so often he had a rough night but not with the same regularity we used to see.
At the beginning of the summer Sam began waking again despite the melatonin. It sook my nerves and sent me into a panic - if the melatonin stops working will we have to turn to a medication to get some sleep? When we did the Adderall experiment, things seemed to even out. He slept better in July. Of course then we had the side effects and stopped the Adderall. The first few days off he still slept fine. Just over a week ago he began to have some problem. he went to sleep well but woke sometime between 2 and 4wanted my company while he stimmed for a few hours. Most time he wouldn't go back to sleep.
This past week Sam also began having trouble falling asleep. He screams if I leave the room before he falls asleep. Luckily this seems to only take 20 minutes or so. Then he wakes around 1 or 2 and cries for me to come back. He then proceeds to NOT sleep until morning when he falls back asleep for a couple of hours. I have to go to work at that point (or take care of Maya depending on the day) and try to function feeling like a zombie.
I don't know why this is happening (besides the obvious "autism" answer. Has he built up a tolerance to melatonin? Has being out of a routine (no school in August) been too much for him? Is he going through something physically that he can't express? I just don't know. What I do know is that I can't do this much longer. I need to be able to do my job well and Sam needs to be able to start school again next week with the ability to learn to the best of his ability. I don't know what next steps to take. Slow release melatonin? give it time and see if he does better once school starts? Beg for Clonodine? I don't know but I need some kind of plan. Letting him "cry it out" is no longer an option because he can get out of his room (climb the gate).
Any suggestions are welcome.
-We have a bedtime routine
-he takes 3-4 mg of melatonin
-he is still on Risperdal
Saturday, August 28, 2010
Siblings and Sandwich
SIBLINGS
One of the nice aspects of Sam being older than Maya is that to her, he has always been this way. When she came into awareness there was this boy who doesn't really talk, who makes funny noises and chews on straws. Because she is only two, she has not yet defined what is normal in her own mind. Perhaps, because of her experience, her ideas will not be too rigid. In Maya's mind, mommy is this way, daddy is that way, and Sam is another way.
Maya long ago passed Sam in her verbal and play skills. At times she tries to engage him in her doll or kitchen play but often she seems to realize that it just won't work. Sam does his own thing. She is aware enough of his quirks that she does a Sam imitation. If you ask her what Sam does she will drop a straw into his straw box (a big plastic tub with slits cut in the top for him to drop things through - it saves our air vents) and waves her arms saying "Oooooooooh".
One nice thing they do "together" from time to time is chase. Maya will tell Sam, "gonna get you" and he will take off running. She will squeal with delight and try to chase him. They can't reverse roles - Sam only knows how to BE chased and tickled, not how to do it to someone else- but Maya doesn't seems to mind.
Every so often Sam will lean over and stroke Maya's cheek or hum right in her face, acknowledging that she is there.
SANDWICH
For some reason, one of my recent obsessions has been getting Sam to eat more appropriate lunch foods. For one thing, as he gets older he will no longer be allowed to have food heated up for him at school. He is allowed in his current classroom but as he moves up, the other building (in a different town) doesn't allow microwaves in the classrooms. I also just don't think it is a good idea for him to eat pasta products allthe time. I decided a few months ago I wanted him to be able to eat a sandwich.
We worked an eating program into Sam's home program this summer and it has gone very well. Prior tot he program, Sam would pinch off tiny pieces of the sandwich rather than take bites. Or he would pull the sandwich apart and lick or pull out the filling but leave the bread. THe program involved started with a full physical prompt along with SD: Take a bite. We faded back to just verbal and gestural prompts as needed as he got better. I also started him on a very easy sandwich - butter and golden syrup (looks like honey). It is easy to bite, the pieces of bread stick together nicely and the flavor is mild. For the past two days, outside of his home program, I have made Sam sandwiches for lunch. He ate them perfectly with only one or two verbal reminders to "take bites". I am very pleased. My hope is that we can add more flavors over the next few months - peanut butter, almond butter etc. Then maybe we can move onto things that are harder to bite like turkey and cheese but that may be asking too much. My hope is to also build in a fruit and vegetable eating program as well. Sam will eat fruit purees (baby food) but rarely will he eat solid fruit.
One of the nice aspects of Sam being older than Maya is that to her, he has always been this way. When she came into awareness there was this boy who doesn't really talk, who makes funny noises and chews on straws. Because she is only two, she has not yet defined what is normal in her own mind. Perhaps, because of her experience, her ideas will not be too rigid. In Maya's mind, mommy is this way, daddy is that way, and Sam is another way.
Maya long ago passed Sam in her verbal and play skills. At times she tries to engage him in her doll or kitchen play but often she seems to realize that it just won't work. Sam does his own thing. She is aware enough of his quirks that she does a Sam imitation. If you ask her what Sam does she will drop a straw into his straw box (a big plastic tub with slits cut in the top for him to drop things through - it saves our air vents) and waves her arms saying "Oooooooooh".
One nice thing they do "together" from time to time is chase. Maya will tell Sam, "gonna get you" and he will take off running. She will squeal with delight and try to chase him. They can't reverse roles - Sam only knows how to BE chased and tickled, not how to do it to someone else- but Maya doesn't seems to mind.
Every so often Sam will lean over and stroke Maya's cheek or hum right in her face, acknowledging that she is there.
SANDWICH
For some reason, one of my recent obsessions has been getting Sam to eat more appropriate lunch foods. For one thing, as he gets older he will no longer be allowed to have food heated up for him at school. He is allowed in his current classroom but as he moves up, the other building (in a different town) doesn't allow microwaves in the classrooms. I also just don't think it is a good idea for him to eat pasta products allthe time. I decided a few months ago I wanted him to be able to eat a sandwich.
We worked an eating program into Sam's home program this summer and it has gone very well. Prior tot he program, Sam would pinch off tiny pieces of the sandwich rather than take bites. Or he would pull the sandwich apart and lick or pull out the filling but leave the bread. THe program involved started with a full physical prompt along with SD: Take a bite. We faded back to just verbal and gestural prompts as needed as he got better. I also started him on a very easy sandwich - butter and golden syrup (looks like honey). It is easy to bite, the pieces of bread stick together nicely and the flavor is mild. For the past two days, outside of his home program, I have made Sam sandwiches for lunch. He ate them perfectly with only one or two verbal reminders to "take bites". I am very pleased. My hope is that we can add more flavors over the next few months - peanut butter, almond butter etc. Then maybe we can move onto things that are harder to bite like turkey and cheese but that may be asking too much. My hope is to also build in a fruit and vegetable eating program as well. Sam will eat fruit purees (baby food) but rarely will he eat solid fruit.
Wednesday, August 25, 2010
Medication Failure
I had to take Sam off the Adderall. It was working in many ways. Sam was stimming less - he was making fewer noises, he was paying attention a little better and he wasn't throwing things at the ceiling compulsively. Unfortunately he was spending about 50% of his day crying or having intense tantrums. My mother drove down one day last week to try to give me a chance to go into my classroom for an hour but as soon as I got there I had to turn around and come home because Sam was freaking her out by crying and being aggressive. It stunk. The only upside was that my mom got a chance the worst of his behavior. I think sometimes other people think I am over protective about leaving him. I suppose I am a little bit but only because I know how he can be. I don't want to plan to be half an hour or more away doing something important only to get a call that Sam is scaring the pants off a sitter.
Sam has had these types of tantrums before but never so many at once and for such a long stretch of time. I suspected the Adderall might be to blame. I took him off (after talking to the doc) and he was happy again. Unfortunately, he is back to climbing the walls and throwing things at the ceiling all day long.
So, it seems we can't live with it and we can't live without it. (btw, he has been on behavior plans for the throwing for the past 2 years. Nothing helps. I am just waiting for him to smash a light bulb in his or someone else's face)
Sam has had these types of tantrums before but never so many at once and for such a long stretch of time. I suspected the Adderall might be to blame. I took him off (after talking to the doc) and he was happy again. Unfortunately, he is back to climbing the walls and throwing things at the ceiling all day long.
So, it seems we can't live with it and we can't live without it. (btw, he has been on behavior plans for the throwing for the past 2 years. Nothing helps. I am just waiting for him to smash a light bulb in his or someone else's face)
Thursday, August 12, 2010
Reflection
Even when I vow to be positive, I have a hard time staying that way. I don't think it is just the result of autism; I think I have always found myself more on the side of worry and frustration. I have been thinking a lot about the source of my most recent bout of anger. I suspect it stems from a combination of the "Just-World Hypothesis" and a sense of entitlement.
The just world hypothesis is the idea that bad things happen to bad people and good things happen to good people. It is something we all KNOW is false but it still lurks somewhere in most of our minds. We perpetuate it by saying things like "what goes around comes around" when someone does something mean (because we assume something bad will come back this person) or "You sooo deserve that" when someone gets something good. We don't mean any harm with these comments but they present the idea that if you are a good person you should get good things and if you are a bad person you should get bad things. So when bad things happen to you, is it payback for some earlier wrongs you committed? Probably not. Plenty of bad things happen to good people but this hypothesis lurks and prompts thoughts like "why me?" and "what did I do to deserve this?"
Then there is entitlement. I think many of us who were raised in middle class homes are guilty of this. We assume that if we follow the "rules" and work hard, we will end up better off than our parents. That is how is works in America, isn't it? My parents were immigrants and I saw them move from supporting us on an assistant professor's salary with very little to their names to earning a pretty good middle class income (my father an ivy league researcher and my mother a full time teacher and part time classical singer). It didn't hurt that they came here with Oxford degrees and did not have to face the racial prejudice many immigrants deal with. My point is, I saw it work. They followed the rules - they made the most of their educational opportunities, worked hard, and they "made it". Halfway through my childhood we moved into a 3 bedroom home on a pretty street in a neighborhood with good schools. We took vacations - nothing too crazy - a week at Cape Cod one year, a visit to the rest of the family in England the next. THey put 2 daughters through college - Barnard for me and Brown for my sister. I guess a big part of me assumed that if I followed the same "rules" I would have a similar life.
But really, just because you do well in school and work hard,
Who says you are entitled to a pretty suburban home?
Who says you should get to go on vacation?
Who says you should earn a great salary?
Who says your children should be "typical" and grow up like everyone else?
People with what look like "perfect" lives may have done very little to deserve them or they may have been the most wonderful people in the world. The Just World Hypothesis is false but it creates frustration regardless.
I realize that happiness is a choice. I can attempt to appreciate the small things that go right in a day or I can moan over the life I wish I had. Happiness is a choice but it is one I am just not very good at making. Obviously, I need to work on that.
The just world hypothesis is the idea that bad things happen to bad people and good things happen to good people. It is something we all KNOW is false but it still lurks somewhere in most of our minds. We perpetuate it by saying things like "what goes around comes around" when someone does something mean (because we assume something bad will come back this person) or "You sooo deserve that" when someone gets something good. We don't mean any harm with these comments but they present the idea that if you are a good person you should get good things and if you are a bad person you should get bad things. So when bad things happen to you, is it payback for some earlier wrongs you committed? Probably not. Plenty of bad things happen to good people but this hypothesis lurks and prompts thoughts like "why me?" and "what did I do to deserve this?"
Then there is entitlement. I think many of us who were raised in middle class homes are guilty of this. We assume that if we follow the "rules" and work hard, we will end up better off than our parents. That is how is works in America, isn't it? My parents were immigrants and I saw them move from supporting us on an assistant professor's salary with very little to their names to earning a pretty good middle class income (my father an ivy league researcher and my mother a full time teacher and part time classical singer). It didn't hurt that they came here with Oxford degrees and did not have to face the racial prejudice many immigrants deal with. My point is, I saw it work. They followed the rules - they made the most of their educational opportunities, worked hard, and they "made it". Halfway through my childhood we moved into a 3 bedroom home on a pretty street in a neighborhood with good schools. We took vacations - nothing too crazy - a week at Cape Cod one year, a visit to the rest of the family in England the next. THey put 2 daughters through college - Barnard for me and Brown for my sister. I guess a big part of me assumed that if I followed the same "rules" I would have a similar life.
But really, just because you do well in school and work hard,
Who says you are entitled to a pretty suburban home?
Who says you should get to go on vacation?
Who says you should earn a great salary?
Who says your children should be "typical" and grow up like everyone else?
People with what look like "perfect" lives may have done very little to deserve them or they may have been the most wonderful people in the world. The Just World Hypothesis is false but it creates frustration regardless.
I realize that happiness is a choice. I can attempt to appreciate the small things that go right in a day or I can moan over the life I wish I had. Happiness is a choice but it is one I am just not very good at making. Obviously, I need to work on that.
Tuesday, August 10, 2010
Ups and Downs
I think the worst is over, for this summer at least. My husband's hip is healing nicely. It won't be back to normal for quite a while and he still has quite a bit of discomfort but the recovery is going better than the first time he had this procedure. He has been able to drive a little this week which is a huge relief. He is trying to go into work a few hours a day which is also a huge relief. As soon as he gets home he has to lie down and elevate the leg and he still can't help out but it is good for him to get out of the house for a while.
Last week was hell week in my mind. Mark was mostly bed-bound and Sam had no ABA or other therapies. Who needs a stairmaster?
Over hell week Sam developed a new obsession - the swing. When he was a baby, he hated swings but once he was moving on his own, he loved them and he has loved them since. Over this past week, his love hit obsessive heights. From the second he was allowed outside each day he began requesting "Wee" (swing). I would push him for a while and then take a break. The second I stopped, "WEE WEE" would begin. After a few minutes break I would concede to push him again. Repeat and repeat. At some point I would let Sam know that I had other things to do (care for 2 year old, cook, clean, wash clothes, wash or feed husband). Complete tantrum. The sort that involve throwing, screaming, pulling, etc. Of course once such behavior begins, I can't give in. He must become quiet and request nicely if he has any hope of getting what he wants. We had some very loud afternoons.
Over the weekend my husband wanted to see if he was steady enough to push the swing. Very nice, don't you think? I thought so, except that he chose the middle of one of Sam's tantrums to give it a try. I think he thought he was helping me out by getting Sam to stop screaming. The thought was nice but by offering to swing Sam in the middle of the tantrum, he was rewarding the tantrum. He told Sam to get ont eh swing and stop crying so he can swing. To me there is a big difference between stopping the tantrum BEFORE getting on the swing and stopping the tantrum BECAUSE he is getting on the swing.
Sam's new medication seems to be ever so slightly quieting some, but not all, of his stims. The vocal stims are less frequent and the straws seem to hold a little less appeal but his attention span remains almost nothing. His sleep is a little better. I had hoped for more as usual but we are pretty much where we always are. It reveals a personality trait I am not particularly proud of - insane jealousy. I am so insanely jealous of people whose autistic children are progressing and learning. I am happy for them as well but in my private moments I am just jealous. What am I doing wrong? - public therapy? private therapy? vitamins? supplements? diets? home program? behavior plans? medication? I have tried it all. And still, except for potty training, Sam has not mastered a single age appropriate skill. He doesn't have a single appropriate play interest - not videos, puzzles, books, trucks, cars - nothing. If you attempt to engage him in any appropriate activity he will scream and run away. He doesn't "get" them. His most recent assessments place him in the <1 percentile on pretty much everything. I can't take him out unless I can physically hold on to him at all times. It. is. not. fair. I know the response to that is "life isn't fair" but really universe, throw us a bone here. I read about families rejoicing because their kids have learned to ride a bike or use a computer or swim or draw a picture. I can't even imagine. Sam can't even focus his eyes on anything long enough to learn to use it. Insane jealousy. People ask me all the time if he likes video games because they have heard autistic kids like video games. I can't even imagine. Sam might enjoy chewing the control or the wires but he would never connect his action with what goes on on a screen.
So there is my confession. I am not proud of my feelings but they are very real. To all of you out there who are seeing your children make great strides - learn to play, to interact, to talk to socialize, to self-care - I am thrilled for you and for the possibilities your children reveal but I am also insanely jealous.
Last week was hell week in my mind. Mark was mostly bed-bound and Sam had no ABA or other therapies. Who needs a stairmaster?
Over hell week Sam developed a new obsession - the swing. When he was a baby, he hated swings but once he was moving on his own, he loved them and he has loved them since. Over this past week, his love hit obsessive heights. From the second he was allowed outside each day he began requesting "Wee" (swing). I would push him for a while and then take a break. The second I stopped, "WEE WEE" would begin. After a few minutes break I would concede to push him again. Repeat and repeat. At some point I would let Sam know that I had other things to do (care for 2 year old, cook, clean, wash clothes, wash or feed husband). Complete tantrum. The sort that involve throwing, screaming, pulling, etc. Of course once such behavior begins, I can't give in. He must become quiet and request nicely if he has any hope of getting what he wants. We had some very loud afternoons.
Over the weekend my husband wanted to see if he was steady enough to push the swing. Very nice, don't you think? I thought so, except that he chose the middle of one of Sam's tantrums to give it a try. I think he thought he was helping me out by getting Sam to stop screaming. The thought was nice but by offering to swing Sam in the middle of the tantrum, he was rewarding the tantrum. He told Sam to get ont eh swing and stop crying so he can swing. To me there is a big difference between stopping the tantrum BEFORE getting on the swing and stopping the tantrum BECAUSE he is getting on the swing.
Sam's new medication seems to be ever so slightly quieting some, but not all, of his stims. The vocal stims are less frequent and the straws seem to hold a little less appeal but his attention span remains almost nothing. His sleep is a little better. I had hoped for more as usual but we are pretty much where we always are. It reveals a personality trait I am not particularly proud of - insane jealousy. I am so insanely jealous of people whose autistic children are progressing and learning. I am happy for them as well but in my private moments I am just jealous. What am I doing wrong? - public therapy? private therapy? vitamins? supplements? diets? home program? behavior plans? medication? I have tried it all. And still, except for potty training, Sam has not mastered a single age appropriate skill. He doesn't have a single appropriate play interest - not videos, puzzles, books, trucks, cars - nothing. If you attempt to engage him in any appropriate activity he will scream and run away. He doesn't "get" them. His most recent assessments place him in the <1 percentile on pretty much everything. I can't take him out unless I can physically hold on to him at all times. It. is. not. fair. I know the response to that is "life isn't fair" but really universe, throw us a bone here. I read about families rejoicing because their kids have learned to ride a bike or use a computer or swim or draw a picture. I can't even imagine. Sam can't even focus his eyes on anything long enough to learn to use it. Insane jealousy. People ask me all the time if he likes video games because they have heard autistic kids like video games. I can't even imagine. Sam might enjoy chewing the control or the wires but he would never connect his action with what goes on on a screen.
So there is my confession. I am not proud of my feelings but they are very real. To all of you out there who are seeing your children make great strides - learn to play, to interact, to talk to socialize, to self-care - I am thrilled for you and for the possibilities your children reveal but I am also insanely jealous.
Subscribe to:
Posts (Atom)