John has a new home away from home. He was placed on Tuesday after school. I took the day off, did his laundry, folded his clothes and stayed home with my sister Angie while Mom and my aunt Barb took him to his new home. They made pizza for him for supper. His room is a bright green and the house is balanced with two male and two female clients. Its five blocks from his new day program (the same Day Program my sister goes to) and he'll go from 9am-Noon. They have their own van to transport them. Which is important because when John has fits, he pinches and he's gotten kicked off busses before. He also tends to sleep at his afternoon day program so it doesn't pay for him to go if he's just going to sleep.
This is a good thing. I am emotionally and logically aware that it is a good thing. He's placed. He's in Green Bay. It will not be hard to visit him, even just for a few hours and an ice cream.
I purposefully haven't gone to settle him in because Mom needs to process this first before I can. Its just the way my family works. Once she gets through the worst of her rough feelings then I can fall into mine.
Last night mom went out with a friend and came home late. I was wound up for some reason. Maybe it was staring at the futon frame. (we removed the mattress because it had been semi-piss soaked) That's where John has slept for the last few weeks. I couldn't hear him snoring. I couldn't kiss the top of his forehead.
I had relief earlier in the evening when he normally would have been pulling at me, throwing things etc and I could just read, hug Angie good night and listen to tv in the background. But as it got later and the house got emptier, things felt heavier. I took my xanax and finally fell asleep around 3:30am after mom came home and we watched an episode of Doctor Who.
This morning I overslept and didnt' want to get out of bed. What I really want to do is go home, crawl into bed and just sleep away the guilt, the loss, the failed hopes.
Emotionally, I tend to intellectualize my feelings. I grieve for a lot of things right now. My dad's birthday was July 28. Its a year anniversary to when I decided to up and move to be with Larry and his kids (a relationship that ended in spectacular disaster) and of course John. He's beautiful and I love him. I'm glad that he is somewhere else so I can go back to being sister and not being the disciplinarian and being angry at him all the time.
I wanted and hoped for ways to help us help John. To find a way to help him get better. Admitting one's limitations is not easy. I've found it takes a lot of tears to wash away just a little of the self-pity and guilt. But life and love goes on.
Thursday, July 30, 2009
Tuesday, July 28, 2009
John John John.
My sweet but unconrollable little brother. I don't know his official diagnosis but along with Down Syndrome, he's being treated for depression, anxiety, seizures and anti social behaviors. Pinching and such. Its kind of hard to explain but he'll get up, throw things, wander around, finding more flat surfaces with stuff on it and throw those things too. I have no better way to describe it except as some kind of fit or tantrum. You can't legally give him a timeout because he doesn't have the cognitive level to 'get' why he's in the wrong.
But we've had some good times while he's been home. Its been lovely to see his smile, to be with him when he's not pinching or striking out. To see him calm and happy. Its a blessing.
He is in a new group home tonight. Its in Green Bay and just a few blocks fro the day program my sister goes to (which is probably where he will end up.) My mom and aunt took him to the new place. I stayed home with my sister. Its complicated to explain but basically we're all emotional over this and I wanted to keep a clear head. In a few days I think I will let it sink in.
It is harder for my mom. I think its hard for all mothers. My sister is more 'mine' and yet she's 'easier' and I had backup. John was always hard but we had hope.
We're grieving the potential but there is more a sense of relief. We were going absolutly nuts. Constantly agitated. That will change now.
Love you John. always.
But we've had some good times while he's been home. Its been lovely to see his smile, to be with him when he's not pinching or striking out. To see him calm and happy. Its a blessing.
He is in a new group home tonight. Its in Green Bay and just a few blocks fro the day program my sister goes to (which is probably where he will end up.) My mom and aunt took him to the new place. I stayed home with my sister. Its complicated to explain but basically we're all emotional over this and I wanted to keep a clear head. In a few days I think I will let it sink in.
It is harder for my mom. I think its hard for all mothers. My sister is more 'mine' and yet she's 'easier' and I had backup. John was always hard but we had hope.
We're grieving the potential but there is more a sense of relief. We were going absolutly nuts. Constantly agitated. That will change now.
Love you John. always.
Wednesday, July 22, 2009
The other shoe dropping slowly...
My brother has been 'assessed' a few times for placement. Of course its not 'pass/fail' but because we have a twisted sense of humor, my family tend to get pretty good at reading people and when they react to John a certain way, we're pretty sure he 'failed'.
He is challenging to say the least. What he needs is a somewhat firm direction and correction combined with some calming tones. But he reacts very much like a 'kid' - the nicer you are, the more he'll take advantage and since that 'advantage' often involves pinching, you tend to have to be fairly firm more often than not.
It is tiring being a disciplinarian though. Its not a role I enjoy playing every day. One of the many reasons I want my brother to be placed in a new home. Then I'd get to go back to what I really enjoy - being a sister.
The downside is that finding a new placement is difficult, kind of like finding a new job. Plus, finding the 'right' one isn't going to happen quickly and he needs to be placed sooner than later for our sanity. So we'll 'hop' a bit, while we try to find the best fit. It won't and cannot be perfect.
However, when you first go through the assessment process and then look at the house possibilities, the theories of what you want to happen clash harshly with the realities. An old house, a questionable neighborhood, people you don't know who will soon have to be taking care of your loved one - there's no simple way to deal with that shock. Even when you prepare yourself for it.
He is challenging to say the least. What he needs is a somewhat firm direction and correction combined with some calming tones. But he reacts very much like a 'kid' - the nicer you are, the more he'll take advantage and since that 'advantage' often involves pinching, you tend to have to be fairly firm more often than not.
It is tiring being a disciplinarian though. Its not a role I enjoy playing every day. One of the many reasons I want my brother to be placed in a new home. Then I'd get to go back to what I really enjoy - being a sister.
The downside is that finding a new placement is difficult, kind of like finding a new job. Plus, finding the 'right' one isn't going to happen quickly and he needs to be placed sooner than later for our sanity. So we'll 'hop' a bit, while we try to find the best fit. It won't and cannot be perfect.
However, when you first go through the assessment process and then look at the house possibilities, the theories of what you want to happen clash harshly with the realities. An old house, a questionable neighborhood, people you don't know who will soon have to be taking care of your loved one - there's no simple way to deal with that shock. Even when you prepare yourself for it.
Monday, July 20, 2009
Johnnie
I think I've mentioned that our main issue in caring for him is the 5pm to midnight shift. He is obsessed with 'za' as in pizza/food. He'll wake out of a total sleep sometimes for 'za' which I think substitutes for comfort/attention.
One of the things that I found when Angie first came out of an institution was that she didn't want to hug anymore. That's a huge thing - 1. because Down Syndrome love physical touch and hugs and 2. she was uncomfortable. There's an issue when you do care especially for adults who have developmental disabilities - appropriate and inappropriate touch. I've run into it when Angie has had a day program put 'appropriate touch' into her IEP because I and my ex-husband encouraged her to hug us goodnight. We firmly believed (and were proven right) that in being able to hug again, she was able to trust, open up and grow further as a whole human being. However, the particular day program she was in, was concerned about her hugging strangers. It wasn't so much that she initiated the hug but that if someone moved in a certain way (particularly when saying goodbye) she would react the way my husband and I had 'taught' her and do a 'half hug' rather than a handshake. They wanted her to be able to differentiate between handshakes and hugs - she's mentally not quite able to do that. To redirect her, we suggested things like stepping back (non verbal signals) and high fives or even a hand bump. We went through that process for a few months and then I witnessed a staff member give a non verbal 'signal' to say goodnight to Angie that indicated to her that it was 'hug time' and the staff member told angie that that was inappropriate.
Just to clarify - my sister is nonverbal. She doesn't speak or use sign language unless prompted. However, she is very good at body language. For instance if you ask her something she can very clearly respond with a "yes" or "no". Yes is actually pretty funny - its usually a smile accompanied by a head bob and using both hands to sign a mix of Yes and No - two fingers crossed over the thumb - I believe the two fingers over the thumb is no and a fist bobbed down is yes. So she uses both her hands, with her finger over her thumb and simultaneously moves them in an up/down motion with a smile and a head bob for "Yes". For no, she turn her entire upper body including shoulders to one side about 45 degrees, her face will tense up and she'll throw her hands out in the opposite direction, all five fingers splayed open.
Therefore, its very clear if she wants or does not want to do something. That being said she is generally very easy going. If she's cranky she'll be less coopertive, have a tendency to smack with her hand the dog or person walking by her and if she's in trouble she will actually make a yell with her vocal cords; the reasons are generally easily deduced. Its either physical (ear infection/cramps) or emotional (she hasn't been given enough attention - i didn't say hello to her when i got home from work or everyone has been fussing over john and ignoring her.) However, her needs are fairly simple. She has toys she likes to play with, she can get up and get her water herself and we encourage her to get her occasional soda herself. I give her the food she eats for lunch but she can feed herself. I give her the clothes to wear on and unless we are going out, she can dress herself. if we're going out, I need to make sure the bra is on and the clothes are right side in and on.
All this is leading to John. He's been in an institution for a long time. He has had to compete with others for attention and he has absolutely learned some bad habits. He's also on medications for those anti social behaviors. But one of the things that is slowly working with him is to consistently and slowly continue to hug him, stroke his hand and even tickle him. These simple, normal interactions remind him of the joy of human touch without it crossing over into that super paranoid "is this appropriate."
This isn't meant to disregard the very real issue of sexual abuse particularly in those with developmental deays because they can't tell us. However, touch is absolutely vital and when someone is deprived of it, its as abusive as a slap.
These 'good touches' have awakened in John more of a need for his "Mama" and when my mom is around, he constantly looks to her for attention and food. In many ways, food has become even more his comfort than before (and he has always loved to eat.) But given his mental age, that makes perfect sense.
If it was just that John needed to adapt to 'good touch' and stop the pinching and possibly learn how to amuse himself instead of needing out external stimulation - then we wouldn't have to place him. However, there's doubt he can get to that point in his development and that kind of change took years for my sister and she could feed herself and dress herself before.
That five pm to midnight shift is exhausting but its also reinforcing that he cares that we are around. Sometimes in the past, you sometimes wondered if he noticed we were here. The answer is "absolutely." So in my eyes, a group home that can understand that - that can work on redirecting him - time in a recliner with music on the tv, time sitting at the kitchen table while dinner is being made and yes, a room where he can be safely contained if he has an outburst and he needs to 'calm down'. Those four to seven hours are the difference between sanity and breaking point for my mom and to some degree myself.
However, it is absolutely great to be able to narrow down these behaviors and eventually maybe we can help them change. Like I said, it took a lot of time with Angie.
Timeline is touchy dependingon what is available but another month probably though something could happen in a week or two or it cold be a matter of waiting for an almost perfect fit.
I sit here and he's sleeping now. He's on the couch. He doesn' want to be in his room alone and while he struggles with continence, he has a depends on and there is a rubber mattress on the futon as well as a layer of cotton towel, soft bath towel and a 'cotton absorbent' chuck.
One of the things that I found when Angie first came out of an institution was that she didn't want to hug anymore. That's a huge thing - 1. because Down Syndrome love physical touch and hugs and 2. she was uncomfortable. There's an issue when you do care especially for adults who have developmental disabilities - appropriate and inappropriate touch. I've run into it when Angie has had a day program put 'appropriate touch' into her IEP because I and my ex-husband encouraged her to hug us goodnight. We firmly believed (and were proven right) that in being able to hug again, she was able to trust, open up and grow further as a whole human being. However, the particular day program she was in, was concerned about her hugging strangers. It wasn't so much that she initiated the hug but that if someone moved in a certain way (particularly when saying goodbye) she would react the way my husband and I had 'taught' her and do a 'half hug' rather than a handshake. They wanted her to be able to differentiate between handshakes and hugs - she's mentally not quite able to do that. To redirect her, we suggested things like stepping back (non verbal signals) and high fives or even a hand bump. We went through that process for a few months and then I witnessed a staff member give a non verbal 'signal' to say goodnight to Angie that indicated to her that it was 'hug time' and the staff member told angie that that was inappropriate.
Just to clarify - my sister is nonverbal. She doesn't speak or use sign language unless prompted. However, she is very good at body language. For instance if you ask her something she can very clearly respond with a "yes" or "no". Yes is actually pretty funny - its usually a smile accompanied by a head bob and using both hands to sign a mix of Yes and No - two fingers crossed over the thumb - I believe the two fingers over the thumb is no and a fist bobbed down is yes. So she uses both her hands, with her finger over her thumb and simultaneously moves them in an up/down motion with a smile and a head bob for "Yes". For no, she turn her entire upper body including shoulders to one side about 45 degrees, her face will tense up and she'll throw her hands out in the opposite direction, all five fingers splayed open.
Therefore, its very clear if she wants or does not want to do something. That being said she is generally very easy going. If she's cranky she'll be less coopertive, have a tendency to smack with her hand the dog or person walking by her and if she's in trouble she will actually make a yell with her vocal cords; the reasons are generally easily deduced. Its either physical (ear infection/cramps) or emotional (she hasn't been given enough attention - i didn't say hello to her when i got home from work or everyone has been fussing over john and ignoring her.) However, her needs are fairly simple. She has toys she likes to play with, she can get up and get her water herself and we encourage her to get her occasional soda herself. I give her the food she eats for lunch but she can feed herself. I give her the clothes to wear on and unless we are going out, she can dress herself. if we're going out, I need to make sure the bra is on and the clothes are right side in and on.
All this is leading to John. He's been in an institution for a long time. He has had to compete with others for attention and he has absolutely learned some bad habits. He's also on medications for those anti social behaviors. But one of the things that is slowly working with him is to consistently and slowly continue to hug him, stroke his hand and even tickle him. These simple, normal interactions remind him of the joy of human touch without it crossing over into that super paranoid "is this appropriate."
This isn't meant to disregard the very real issue of sexual abuse particularly in those with developmental deays because they can't tell us. However, touch is absolutely vital and when someone is deprived of it, its as abusive as a slap.
These 'good touches' have awakened in John more of a need for his "Mama" and when my mom is around, he constantly looks to her for attention and food. In many ways, food has become even more his comfort than before (and he has always loved to eat.) But given his mental age, that makes perfect sense.
If it was just that John needed to adapt to 'good touch' and stop the pinching and possibly learn how to amuse himself instead of needing out external stimulation - then we wouldn't have to place him. However, there's doubt he can get to that point in his development and that kind of change took years for my sister and she could feed herself and dress herself before.
That five pm to midnight shift is exhausting but its also reinforcing that he cares that we are around. Sometimes in the past, you sometimes wondered if he noticed we were here. The answer is "absolutely." So in my eyes, a group home that can understand that - that can work on redirecting him - time in a recliner with music on the tv, time sitting at the kitchen table while dinner is being made and yes, a room where he can be safely contained if he has an outburst and he needs to 'calm down'. Those four to seven hours are the difference between sanity and breaking point for my mom and to some degree myself.
However, it is absolutely great to be able to narrow down these behaviors and eventually maybe we can help them change. Like I said, it took a lot of time with Angie.
Timeline is touchy dependingon what is available but another month probably though something could happen in a week or two or it cold be a matter of waiting for an almost perfect fit.
I sit here and he's sleeping now. He's on the couch. He doesn' want to be in his room alone and while he struggles with continence, he has a depends on and there is a rubber mattress on the futon as well as a layer of cotton towel, soft bath towel and a 'cotton absorbent' chuck.
Wednesday, July 15, 2009
All about me
Hi, my name is Hollie - that's with an -ie not a y. My mother loves Christmas but I was born in June so... Hollie. I correct people on the spelling of the name because I am not "holly" - when I see the name it doesn't even register that they might be referring to me. Weird, huh?
I also just realized that my initials (first name, middle name, last name) fit the names of my siblings (my middle name starts with A and my last name starts with J). I'd never realized that before.
I am less tired and frustrated than I was on Friday. I do have a slight urge to run away but I'm attempting to do less of that. I went swimming at the YMCA last night and will probably go again soon but it depends on when I'm dropping things off for my rummage sale. The swimming will be my hobby, my escape, my coping mechanism for as long as it cheers me up.
My brother needs constant interaction and supervision. That, I think, is what is so difficult. We work all day only to come home and have to feed him, bathe him and keep him occupied until he's sleepy enough to go to bed. If you attempt to relax by writing (what I do on my computer) he'll try and take it out of my hands. Since I like my time to myself, I get pretty irked when I have to constantly be on 'red alert' when he's around.
Huge self assessment of failure. Logically, I know that its life - that having a life is important, that being whole and healthy for other people in addition to my brother is also important - blah blah. But logic isn't that feeling of guilt that settles in my stomache. It is what it is.
We are still waiting to hear about assessments and placement for John. Mom has made some calls and is waiting to hear back. So much paperwork and time. Right now, I get John dressed and sometimes feed him if Mom runs late and then I put him on the bus at 8am. Mom does the rest including nights.
I really just want - well I don't know. In 15 months, I've moved 5 times. Do I want my own room back? Do I want to travel? Do I want to leave the house more? Write more? Read more?
I'm unsure and out of ideas.
I also just realized that my initials (first name, middle name, last name) fit the names of my siblings (my middle name starts with A and my last name starts with J). I'd never realized that before.
I am less tired and frustrated than I was on Friday. I do have a slight urge to run away but I'm attempting to do less of that. I went swimming at the YMCA last night and will probably go again soon but it depends on when I'm dropping things off for my rummage sale. The swimming will be my hobby, my escape, my coping mechanism for as long as it cheers me up.
My brother needs constant interaction and supervision. That, I think, is what is so difficult. We work all day only to come home and have to feed him, bathe him and keep him occupied until he's sleepy enough to go to bed. If you attempt to relax by writing (what I do on my computer) he'll try and take it out of my hands. Since I like my time to myself, I get pretty irked when I have to constantly be on 'red alert' when he's around.
Huge self assessment of failure. Logically, I know that its life - that having a life is important, that being whole and healthy for other people in addition to my brother is also important - blah blah. But logic isn't that feeling of guilt that settles in my stomache. It is what it is.
We are still waiting to hear about assessments and placement for John. Mom has made some calls and is waiting to hear back. So much paperwork and time. Right now, I get John dressed and sometimes feed him if Mom runs late and then I put him on the bus at 8am. Mom does the rest including nights.
I really just want - well I don't know. In 15 months, I've moved 5 times. Do I want my own room back? Do I want to travel? Do I want to leave the house more? Write more? Read more?
I'm unsure and out of ideas.
Friday, July 10, 2009
Loss and what is fair
I'm tired and there are tears running down my face. I feel defeated. I don't understand my brother. Its like there's this murky fog between us and even with massive amounts of calming medication, he still is singularily focused on food, mayhem and pinching.
Oh the damn pinching. The reaching out to tear the computer out of my hands. THe grabbing of an ankle that I've already just had pins out of and that still hurts. He ate at 8:40 am and he's wandering around the kitchen wanting more food. He had a snack at 10:00 including another as needed dose of both of his calming drugs.
In a minute I'm going to put the tv on and try to sit next to him to see if he'll attack me or be still. I'll feed him another pudding or maybe an early lunch. Some water. Some music.
My mom is arranging for new placement for him. Two days, two weeks - I'm not sure. He will get on the bus here instead of the place my sister gets on the bus because he was evicted from there for throwing chairs.
Life isn't fair. We lose people we love - not only to death but to disability. Something is going on inside his brain. Schizophrenia? Autism? I don't know. I try to connect and i hit a wall. I feel like a failure of a sister. Even more so, I watch my dogs and my sister try to get close to me and I'm so frustrated with my brother that they stay away because I feel so awful.
This is not a "god I love that my brother teaches me" things post. This is a "dammit its really not fair that life gives us these challenges." Somewhere in this whole equation is my faith that there is a reason for everything but in these moments you wonder, truly, when he was being kept alive on a ventilator, did we do the right thing by keeping him on it?
Of course I know the answer but look at the prognosis for his life. There's very little funding for low functioning disabled adults. He'll be placed in homes that will continue to cope with his good days and bads with medication, time outs and naps and food. THey will be paid by the state and they will take a burden off this family who tried very hard but failed.
We can't put one member above all others - that's not what my faith, my family values are about. My mom, my sister, my cousins - all of us are affected by this challenge that has raised our stress level to red alert.
So in failure there is grace. Acceptance of one's limits. Of my limits. We had to ottry. We hoped to succeed. We did not. We will survive as a family just not the way we expected to.
Oh the damn pinching. The reaching out to tear the computer out of my hands. THe grabbing of an ankle that I've already just had pins out of and that still hurts. He ate at 8:40 am and he's wandering around the kitchen wanting more food. He had a snack at 10:00 including another as needed dose of both of his calming drugs.
In a minute I'm going to put the tv on and try to sit next to him to see if he'll attack me or be still. I'll feed him another pudding or maybe an early lunch. Some water. Some music.
My mom is arranging for new placement for him. Two days, two weeks - I'm not sure. He will get on the bus here instead of the place my sister gets on the bus because he was evicted from there for throwing chairs.
Life isn't fair. We lose people we love - not only to death but to disability. Something is going on inside his brain. Schizophrenia? Autism? I don't know. I try to connect and i hit a wall. I feel like a failure of a sister. Even more so, I watch my dogs and my sister try to get close to me and I'm so frustrated with my brother that they stay away because I feel so awful.
This is not a "god I love that my brother teaches me" things post. This is a "dammit its really not fair that life gives us these challenges." Somewhere in this whole equation is my faith that there is a reason for everything but in these moments you wonder, truly, when he was being kept alive on a ventilator, did we do the right thing by keeping him on it?
Of course I know the answer but look at the prognosis for his life. There's very little funding for low functioning disabled adults. He'll be placed in homes that will continue to cope with his good days and bads with medication, time outs and naps and food. THey will be paid by the state and they will take a burden off this family who tried very hard but failed.
We can't put one member above all others - that's not what my faith, my family values are about. My mom, my sister, my cousins - all of us are affected by this challenge that has raised our stress level to red alert.
So in failure there is grace. Acceptance of one's limits. Of my limits. We had to ottry. We hoped to succeed. We did not. We will survive as a family just not the way we expected to.
Thursday, July 9, 2009
Fiction helps us escape a harsh reality
My brother is challenging and today he was out of control. While my sister can participate gently and happily in events, my brother needs more supervision and special attention. Today this escalated into him throwing a chair and a few other things at a home that he waits at to get on the bus.
My mom and I have been dealing with his moods, his aggressiveness and his changes for awhile. We keep asking the question - how long can we do this? Can it get better? Can we do something?
The answer, for now, is that we can't anymore. Tomorrow we involve social workers and Crisis intervention. I'm staying home to watch my brother. My mom is going to work and going to be initiating phone calls. We're relieved and heartbroken. We tried. We learned. But we failed.
This makes the potential loss of a fictional character far less dramatic.
My mom and I have been dealing with his moods, his aggressiveness and his changes for awhile. We keep asking the question - how long can we do this? Can it get better? Can we do something?
The answer, for now, is that we can't anymore. Tomorrow we involve social workers and Crisis intervention. I'm staying home to watch my brother. My mom is going to work and going to be initiating phone calls. We're relieved and heartbroken. We tried. We learned. But we failed.
This makes the potential loss of a fictional character far less dramatic.
Monday, July 6, 2009
Strategy...
John is ill again and on antibiotics. Pneumonia is so very dangerous for those in precarious health stages and we are afraid it will settle in again.
Knowing he would be agitated by the antibiotics, mom decided we wouldn't fight with him to go to bed. We'd use his PRN meds (as needed) to calm him down and we'd go through the initial routine - bathroom, bed but when he came out, instead of making him go back to his bedroom, we'd let him sit on the futon and sleep there if he falls asleep. There was some minimal fussing. He got up, he wanted mom to give him more food or water but a few more circular routes - bathroom, bed, futon and he finally settled in and is now asleep.
When I got home tonight he was an angel. All smiles and even a hug. He's mimicing Angie now in putting his hand up when I go by so I can give him a 'low five' so to speak.
So another phase in the journey. Confronting his challenges from mortality to the banal "I wonder if he's autistic as well as having Down Syndrome - but would we treat him any different?
Knowing he would be agitated by the antibiotics, mom decided we wouldn't fight with him to go to bed. We'd use his PRN meds (as needed) to calm him down and we'd go through the initial routine - bathroom, bed but when he came out, instead of making him go back to his bedroom, we'd let him sit on the futon and sleep there if he falls asleep. There was some minimal fussing. He got up, he wanted mom to give him more food or water but a few more circular routes - bathroom, bed, futon and he finally settled in and is now asleep.
When I got home tonight he was an angel. All smiles and even a hug. He's mimicing Angie now in putting his hand up when I go by so I can give him a 'low five' so to speak.
So another phase in the journey. Confronting his challenges from mortality to the banal "I wonder if he's autistic as well as having Down Syndrome - but would we treat him any different?
Sunday, July 5, 2009
The "Downs" of "Downs"
Its 9pm and past John's bedtime. He's fighting sleep and I just do not know why. I've tried putting him in bed when he first got sleepy. Usually after his 6:30pm med dose, he's tired by 7 and sleeping so soundly I can't move him by 7:30pm. But not this night.
Take 1. Bathroom then bed. Lasts five minutes before he's wide awake and back in the living room.
Wait until he starts to doze on the couch again.
Take 2. Straight to bed. Lasts 2 minutes, he fights past me through the door and into the living room.
Ok new tactic. Back to bed. Only he struggles, scratching, pinching and finally sitting down on the floor in the hallway. I'm half heartbroken and half plain old angry.
Why? No antibiotics this time. Just John. Nothing seems out of the ordinary. He's not sick. We had an uneventful night. No logical reasoning and of course he can't talk to me and tell me why.
Take 3. He gets up and I stand in front of him, telling him calmly its time for bed. He has to get up for school tomorrow. He pushes but I don't budge. Standoff. He's getting tired enough that I can take him back to bed. He lays down. I pull the sheet over him. I stand in his room. Each time he tries to get up, I say no, its bedtime. This just wakes him up more. I give up and take him to the bathroom. He doesn't have to go. I bring him back out to the softa in the living room.
Take 4. I get one of his 'PRN' (as needed for those who don't know) meds. It dissolves quickly in his mouth so I give that to him along with a little water. I wait. And wait. He dozes but as soon as I get up to move him to go to bed, he's wide awake and fighting me.
Take 5. He's fallen asleep. So deeply that it takes my mom and I carrying him to his bed to get him into bed. Literally, mom had his arms, I had his legs. We both have bad backs to begin with. Finally he's in bed.
6am comes and he wanders out of his bedroom naked, the smell of urine following him. I'm in bed down the hall and I smell and hear it and I groan. He walks through the house to mom's room. She's already awake and puts him on the toilet and checks out his room. Sure enough, his bed is soaked. The 'chucks' (cotton absorbent pads laid down on top of the sheet) are soaked too. Time for laundry. Plus a sponge bath for John since he has to go to day program.
This doesn't happen every night. It didn't happen at all when he first came home from the hospital. Then the antibiotics. Then those pills were done and now nightly we have to find that 'sweet spot' between him getting sleepy and falling deeply asleep.
I have scratches and bruises on my arms. I can't explain to people who do not have an adult child like this why this is happening. I don't know. Is he partly autistic? Is there some other diagnosis? Does it matter? He's medicated for all kinds of behavioral problems. Its just so tiring. Is this what having him 'home' is going to be like? There's a point where the stress breaks you. I don't want to get to that point.
Take 1. Bathroom then bed. Lasts five minutes before he's wide awake and back in the living room.
Wait until he starts to doze on the couch again.
Take 2. Straight to bed. Lasts 2 minutes, he fights past me through the door and into the living room.
Ok new tactic. Back to bed. Only he struggles, scratching, pinching and finally sitting down on the floor in the hallway. I'm half heartbroken and half plain old angry.
Why? No antibiotics this time. Just John. Nothing seems out of the ordinary. He's not sick. We had an uneventful night. No logical reasoning and of course he can't talk to me and tell me why.
Take 3. He gets up and I stand in front of him, telling him calmly its time for bed. He has to get up for school tomorrow. He pushes but I don't budge. Standoff. He's getting tired enough that I can take him back to bed. He lays down. I pull the sheet over him. I stand in his room. Each time he tries to get up, I say no, its bedtime. This just wakes him up more. I give up and take him to the bathroom. He doesn't have to go. I bring him back out to the softa in the living room.
Take 4. I get one of his 'PRN' (as needed for those who don't know) meds. It dissolves quickly in his mouth so I give that to him along with a little water. I wait. And wait. He dozes but as soon as I get up to move him to go to bed, he's wide awake and fighting me.
Take 5. He's fallen asleep. So deeply that it takes my mom and I carrying him to his bed to get him into bed. Literally, mom had his arms, I had his legs. We both have bad backs to begin with. Finally he's in bed.
6am comes and he wanders out of his bedroom naked, the smell of urine following him. I'm in bed down the hall and I smell and hear it and I groan. He walks through the house to mom's room. She's already awake and puts him on the toilet and checks out his room. Sure enough, his bed is soaked. The 'chucks' (cotton absorbent pads laid down on top of the sheet) are soaked too. Time for laundry. Plus a sponge bath for John since he has to go to day program.
This doesn't happen every night. It didn't happen at all when he first came home from the hospital. Then the antibiotics. Then those pills were done and now nightly we have to find that 'sweet spot' between him getting sleepy and falling deeply asleep.
I have scratches and bruises on my arms. I can't explain to people who do not have an adult child like this why this is happening. I don't know. Is he partly autistic? Is there some other diagnosis? Does it matter? He's medicated for all kinds of behavioral problems. Its just so tiring. Is this what having him 'home' is going to be like? There's a point where the stress breaks you. I don't want to get to that point.
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