So, it's been a while. Things have been overwhelming lately. (more so than before)
On top of Will being in SH I was without heat at my home for 4 days and my car died at the same time. My parents bought me a car. I'm very grateful to them for helping me out, but it makes me feel like a loser. I'm 38 years old and should be able to take care of myself.
What started out as the worst week of my life became I e of the most wonderful. So many people have been sending Will cards in show of support and encouragement. I learned that Brian Waters (from the Patriots) wife is sending Will cards and wants to send him a care package when he comes home. At Trader Joes the cashier said she wanted to talk to her manager about sending him a care package as well from Trader Joes. Wow! How wonderful that strangers are willing to support my wonderful son!!
The garage I brought my van to even waived their $40 fee for looking at it. I feel truly blessed to have these people in my life.
The best part is that after having lunch with Will this morning I talked to the social worker about our next meeting. At our last they had no plans for a discharge. We scheduled the meeting but was also told that they believe Will has turned a corner and they are now thinking about discharge in 2 weeks.
I'm so happy about this turn of events, but terrified at the same time. This means a lot if hard work and vigilance on my part. I'm not afraid of hard work, I'm afraid of screwing up and mostly of Jason not doing the work. I don't want to make any mistakes. I know I'm human and will make mistakes, I just hope they aren't big ones and Will continues to move forward and doesn't backslide. Especially because of something I did. I want him to continue on his path towards self control, self soothing, higher self esteem, lessened anxiety and lessened depression. Please let me support him on this path.
Wednesday, February 29, 2012
Saturday, February 18, 2012
Wills classmates
This week as you know started off rough. One of the things that lifted my spirits was Wills classmates from Kaler elementary.
Will was having a rough start to his week as well. In talking to his drs I decided to call his school and asked to pick up a book he had left at school called "Meet Mr. Thotso Your Thought Maker". This was on Wednesday. The day after Valentines day. When I drove to the school to pick up the book, his teachers asked after him and then have us a bag full of Valentines cards and treats that his teachers and classmates made for Will.
His eyes lit right up when he saw what his friends and classmates had done for him.
It's people like this, these kids who have befriended my son, and the amazing teachers who have taught these children how to be non-judgmental and accepting of all people no matter how different they may be. These people show us just how beautiful humanity can be.
God works in beautiful and wonderful ways.
Will was having a rough start to his week as well. In talking to his drs I decided to call his school and asked to pick up a book he had left at school called "Meet Mr. Thotso Your Thought Maker". This was on Wednesday. The day after Valentines day. When I drove to the school to pick up the book, his teachers asked after him and then have us a bag full of Valentines cards and treats that his teachers and classmates made for Will.
His eyes lit right up when he saw what his friends and classmates had done for him.
It's people like this, these kids who have befriended my son, and the amazing teachers who have taught these children how to be non-judgmental and accepting of all people no matter how different they may be. These people show us just how beautiful humanity can be.
God works in beautiful and wonderful ways.
A very long week
This week started off feeling completely hopeless. I ran out of oil Sunday, the same day my van decided to say goodbye. Now Sundays are the only days of the week I work all day and can't see Will. Every other day I can at least see him for 20 minutes while he eats lunch. Monday I was called telling me I could not come for lunch due to Will struggling. (I found out later that day that he lost my visit as punishment NOT supposed to happen!!!!!!!) I went Tuesday for lunch. I was very anxious to see him not only because of the previous day, but also because he is my only Valentine.
Again they refused to let me see him. This time because he was in the middle of a crisis. I did see his hand from behind a mat (he was trying to hit staff) I left his valentine cards
And gifts at the nurses station and cried as I left, feeling more alone than I thought possible.
However, not all was lost, I changed my way of thinking, and on Tuesday I was able to have oil delivered. (didn't have heat till Thursday as I was at work when they delivered oil so no one was there to let the guy in to bleed the line and start furnace.)
My parents let me borrow their car, and I'm still borrowing it. My father also took me out Friday to look at cars and bought me one on the spot. I can't say how appreciative and grateful I am to my parents for their help and support, but I also kind of feel like a loser for being 38 and unable to buy my own car. Oh well, I'm a work in progress and trying to not beat myself up too much for needing help. Especially since there is so much going on in my life right now.
I was also able to visit Will weds, thurs and Friday!! He has been in very good spirits all three days. Even with his med and dietary changes. I look forward to seeing him again today and enjoy music group with him. It seems to be the only place where Will can/will tolerate my singing. Then I will go pick up my mom (she's without a car since I'm borrowing hers till I pick up my new car at the beginning of the week) and we will go back to SH to visit with Will.
Then we will go visit my grandfather who is not doing well at all. He's getting more confused and depressed by the day. He is very clear (and has been all his life) that this is not how he wants to live. Although I love him dearly and want him with me for as long as possible our whole family has started to pray that he does not see his next birthday (march 2). He is an amazing man and I love him with all my heart.
As for other blessings this week: I went to pick up the van and they waived the $40 fee for looking at it. Also, I got 2 iced coffees yesterday for the price of one. May not sound like a lot, but I was grateful and that second coffee came in mighty handy. ;~). Also, at Trader Joes when explaining why I was buying so many cards (cashier asked first) she took down Wills name and said she was going to ask if TJ's could put together a package for him and send it. WOW! How amazing!!!!!!
And to top it all off, my mother connected with the wife of a Patriots football player a while back. She is sending Will cards, and has asked for a list of his favorite things so she can get a care package together for him. How blessed am I to have so many people care about my son. My faith has certainly been renewed this last week. To go from depression, fear, and such a sense of being overwhelmed to having hope, faith, acceptance, help, and love. I have a deep sense of gratitude to everyone who has and is supporting Will and myself. To everyone who has offered any and all help: thank you so very much. I feel so blessed to have you in my life. I love and appreciate you so very much.
Here are a few pictures from Will's valentine present.
His favorite reason was that he's cute. ;~)
Again they refused to let me see him. This time because he was in the middle of a crisis. I did see his hand from behind a mat (he was trying to hit staff) I left his valentine cards
And gifts at the nurses station and cried as I left, feeling more alone than I thought possible.
However, not all was lost, I changed my way of thinking, and on Tuesday I was able to have oil delivered. (didn't have heat till Thursday as I was at work when they delivered oil so no one was there to let the guy in to bleed the line and start furnace.)
My parents let me borrow their car, and I'm still borrowing it. My father also took me out Friday to look at cars and bought me one on the spot. I can't say how appreciative and grateful I am to my parents for their help and support, but I also kind of feel like a loser for being 38 and unable to buy my own car. Oh well, I'm a work in progress and trying to not beat myself up too much for needing help. Especially since there is so much going on in my life right now.
I was also able to visit Will weds, thurs and Friday!! He has been in very good spirits all three days. Even with his med and dietary changes. I look forward to seeing him again today and enjoy music group with him. It seems to be the only place where Will can/will tolerate my singing. Then I will go pick up my mom (she's without a car since I'm borrowing hers till I pick up my new car at the beginning of the week) and we will go back to SH to visit with Will.
Then we will go visit my grandfather who is not doing well at all. He's getting more confused and depressed by the day. He is very clear (and has been all his life) that this is not how he wants to live. Although I love him dearly and want him with me for as long as possible our whole family has started to pray that he does not see his next birthday (march 2). He is an amazing man and I love him with all my heart.
As for other blessings this week: I went to pick up the van and they waived the $40 fee for looking at it. Also, I got 2 iced coffees yesterday for the price of one. May not sound like a lot, but I was grateful and that second coffee came in mighty handy. ;~). Also, at Trader Joes when explaining why I was buying so many cards (cashier asked first) she took down Wills name and said she was going to ask if TJ's could put together a package for him and send it. WOW! How amazing!!!!!!
And to top it all off, my mother connected with the wife of a Patriots football player a while back. She is sending Will cards, and has asked for a list of his favorite things so she can get a care package together for him. How blessed am I to have so many people care about my son. My faith has certainly been renewed this last week. To go from depression, fear, and such a sense of being overwhelmed to having hope, faith, acceptance, help, and love. I have a deep sense of gratitude to everyone who has and is supporting Will and myself. To everyone who has offered any and all help: thank you so very much. I feel so blessed to have you in my life. I love and appreciate you so very much.
Here are a few pictures from Will's valentine present.
His favorite reason was that he's cute. ;~)
Sunday, February 12, 2012
Morning call
SH called this morning. I don't know what the reason is, but had a hard morning today. Restraints and locked seclusion this am. They can't figure out the antecedents so..... Still no idea as to what is going on.
The one thing I find frustrating is I have mentioned at least 3 times in the last three days that Will has expressed a desire to try a body sock to help when agitated. Every time I say something about it they are surprised and say they will try offering it to him.
But will they remember next time he's explosive? Only time will tell. Now to wait and see if he has a good bedtime tonight. Here's hoping..........
The one thing I find frustrating is I have mentioned at least 3 times in the last three days that Will has expressed a desire to try a body sock to help when agitated. Every time I say something about it they are surprised and say they will try offering it to him.
But will they remember next time he's explosive? Only time will tell. Now to wait and see if he has a good bedtime tonight. Here's hoping..........
Saturday, February 11, 2012
Another call
I have received one more call from SH. Will is having another rough night. Will it ever get better? Will he ever start going to sleep there easily, without being locked up and being restrained multiple times a night? This is breaking my heart
What is going on for this little boy? What's going on in his head? Will we ever know?
Moving on....... I got to spend the better part of the day (after lunch through supper) with Will. Because I can shadow now, I can be with him when he is participating in his groups. We had music group--- being someone who loves music, I had a blast singing everything from Puff the Magic Dragon to the Beatles and Stones. Another great part of it was that the man who ran it is a wonderful man I know from my work. How small is the world, I've worked with his son, and now he's working with mine.
He participated in a group where they talked about bad habits, which ones they have, how they affect others and themselves, as well as ways to change these bad habits. Will didn't want to be in this group, he started acting out. I think most of it was because I was there. He would whine and talk about being frustrated, then he would stop and turn to see if I was paying attention and what I would do about it.
I think he was very disappointed when I acted in accord with his behavior protocol like his staff.
It's 10:30pm, bedtime was 8pm and he is still in locked seclusion. I love my baby, and I want him to come home. But first he needs to get better.
Please get better soon........
What is going on for this little boy? What's going on in his head? Will we ever know?
Moving on....... I got to spend the better part of the day (after lunch through supper) with Will. Because I can shadow now, I can be with him when he is participating in his groups. We had music group--- being someone who loves music, I had a blast singing everything from Puff the Magic Dragon to the Beatles and Stones. Another great part of it was that the man who ran it is a wonderful man I know from my work. How small is the world, I've worked with his son, and now he's working with mine.
He participated in a group where they talked about bad habits, which ones they have, how they affect others and themselves, as well as ways to change these bad habits. Will didn't want to be in this group, he started acting out. I think most of it was because I was there. He would whine and talk about being frustrated, then he would stop and turn to see if I was paying attention and what I would do about it.
I think he was very disappointed when I acted in accord with his behavior protocol like his staff.
It's 10:30pm, bedtime was 8pm and he is still in locked seclusion. I love my baby, and I want him to come home. But first he needs to get better.
Please get better soon........
Friday, February 10, 2012
Will is a challenge
After another bad night, I had lunch with Will, had a 2 o'clock meeting at Spring Harbor and a nice visit after.
I now get to "shadow" when I'm there. This means that I can wear a special badge and follow Will and his staff around and go all over the hospital with them observing his treatment plan being implemented.
I've been home for a few hours and have just received yet another call from SH. Will has been in 4 restraints in 3 hours. He is talking about robots being in the room with him, he's afraid of ten, he's worried about tomorrow and he would calm only to escalate a few minutes later.
The nurse reiterated to me that they can't figure him out. He is a challenge, a puzzle and a complicated little boy.
I feel panicky when I get these calls. Even though he is now asleep, I am wound up tighter than a spring and don't think I'll be sleeping any time soon for yet another night in a row.
I want him to feel better, but instead he's staying the same or is more dis regulated than before. I realize it has only been a week, but where is his miracle? I know, I know, it's SH. That's his miracle. I just want another one: him happy, less anxious, less aggressive, and home with me asleep in his own bed. And I want it NOW!!!
Really, is that too much to ask? Oh, and some sleep for me, a new car, and oil to heat my house. That's not asking a lot, right?
One more thing.........I want a hug.
I now get to "shadow" when I'm there. This means that I can wear a special badge and follow Will and his staff around and go all over the hospital with them observing his treatment plan being implemented.
I've been home for a few hours and have just received yet another call from SH. Will has been in 4 restraints in 3 hours. He is talking about robots being in the room with him, he's afraid of ten, he's worried about tomorrow and he would calm only to escalate a few minutes later.
The nurse reiterated to me that they can't figure him out. He is a challenge, a puzzle and a complicated little boy.
I feel panicky when I get these calls. Even though he is now asleep, I am wound up tighter than a spring and don't think I'll be sleeping any time soon for yet another night in a row.
I want him to feel better, but instead he's staying the same or is more dis regulated than before. I realize it has only been a week, but where is his miracle? I know, I know, it's SH. That's his miracle. I just want another one: him happy, less anxious, less aggressive, and home with me asleep in his own bed. And I want it NOW!!!
Really, is that too much to ask? Oh, and some sleep for me, a new car, and oil to heat my house. That's not asking a lot, right?
One more thing.........I want a hug.
Thursday, February 9, 2012
Another sleepless night....
Will had a rough night last night. Then he had a great day today.
I, on the other hand, had a migraine today. I had lunch with Will then met with the psychiatric resident. She wanted some more info on family psychiatric history. I told her everything I knew, most I had shared last Thursday at the intake meeting.
I went to work, came home, figured I'd actually get some sleep tonight because of this headache. I was actually almost happy about the headache. It felt like because of it I had an excuse to let myself get a good night sleep. I was confident my brain was going to let me sleep tonight.......
Then the phone rang....
It was Spring Harbor calling to let me know he had been in locked seclusion again tonight. I have just received another call telling me he is finally asleep after 2 more lock downs.
He's talking about robots being in the room with him. This is new, I don't know what this means. The dr already told me today they were no closer to figuring him out then they were on day one.
What the hell does that mean? This sounds like one of my worst fears realized. But I have to stop, I have to put my faith in God, in this hospital, in these wonderful group of doctors, nurses, and staff. I have to believe that I'm living this for a reason and things will get better for him. They have to.
Which means: let go and let God
I can do this, right?
I, on the other hand, had a migraine today. I had lunch with Will then met with the psychiatric resident. She wanted some more info on family psychiatric history. I told her everything I knew, most I had shared last Thursday at the intake meeting.
I went to work, came home, figured I'd actually get some sleep tonight because of this headache. I was actually almost happy about the headache. It felt like because of it I had an excuse to let myself get a good night sleep. I was confident my brain was going to let me sleep tonight.......
Then the phone rang....
It was Spring Harbor calling to let me know he had been in locked seclusion again tonight. I have just received another call telling me he is finally asleep after 2 more lock downs.
He's talking about robots being in the room with him. This is new, I don't know what this means. The dr already told me today they were no closer to figuring him out then they were on day one.
What the hell does that mean? This sounds like one of my worst fears realized. But I have to stop, I have to put my faith in God, in this hospital, in these wonderful group of doctors, nurses, and staff. I have to believe that I'm living this for a reason and things will get better for him. They have to.
Which means: let go and let God
I can do this, right?
Tuesday, February 7, 2012
I want a hug
All I want is a hug. And a kiss, and a snuggle, and a cuddle, and to watch Will sleep, and to see his smile.......
Is that really too much?
Is that really too much?
A long night and a sad day
Last night was a very rough night. Will was in and out of locked seclusion and had at least one floor restraint as well as being blanket wrapped. I got 4 calls throughout. Surprisingly, (not) I got very little sleep again. He finally calmed and stayed calm on the way back to his room, he was asleep soon after his head hit the pillow. I'm not surprised. I've lived with his struggles and melt downs. It takes a lot out of him.
I went for my lunch visit today. Will looked very tired. He was very quiet, and told me he was very sad and overwhelmed. We talked for a while, I went over all the things he could try to think about when he feels this way: we talked about everyone who cares about him and is thinking of him. That he can call me, that I can call him, that I visit everyday (except Sundays as I work all day) that his dad visits almost everyday. That he is receiving cards from family and friends from all over the country who are thinking of him.
He said that helps a little, the question is---can he access those thoughts when he's struggling? I hope so, but that has always escaped his grasp in the past. Hopefully they can help him with these coping skills and others.
He still doesn't express an interest in wanting to be home, but it breaks my heart to see him sad. I wish a hug could make it all better.......
I went for my lunch visit today. Will looked very tired. He was very quiet, and told me he was very sad and overwhelmed. We talked for a while, I went over all the things he could try to think about when he feels this way: we talked about everyone who cares about him and is thinking of him. That he can call me, that I can call him, that I visit everyday (except Sundays as I work all day) that his dad visits almost everyday. That he is receiving cards from family and friends from all over the country who are thinking of him.
He said that helps a little, the question is---can he access those thoughts when he's struggling? I hope so, but that has always escaped his grasp in the past. Hopefully they can help him with these coping skills and others.
He still doesn't express an interest in wanting to be home, but it breaks my heart to see him sad. I wish a hug could make it all better.......
Monday, February 6, 2012
Visit
I visited Will for lunch today. It was a good visit. I watched him make his own pb & j sandwich, heard about how his day at school was going, got my new drawing assignment-- a picture of the whole Mario group-- oy vey. Should be interesting.
When he was done, he had a little time and chose to go outside and walk around the building. I was able to go with him. It was such a great time. Though all too soon it was over, I gave him a hug and a kiss as he went back upstairs to school and I came home alone.
I will be back tomorrow, and every other day (m-sat) to visit with my amazing and brave little (ok, not so little) boy. I love him so very much.
When he was done, he had a little time and chose to go outside and walk around the building. I was able to go with him. It was such a great time. Though all too soon it was over, I gave him a hug and a kiss as he went back upstairs to school and I came home alone.
I will be back tomorrow, and every other day (m-sat) to visit with my amazing and brave little (ok, not so little) boy. I love him so very much.
Lonely
First I have a disclaimer--- this is not a pity party, this isn't to make others feel bad for me, and it isn't to make others feel bad or guilty.
I am feeling very lonely. It's not the type of lonely which can be fixed by being with friends or family. I need Will. I was up till 3:30 this morning and awake by 7:15. This is not because I wasn't tired, I was exhausted. I just can't turn off my brain. It also isn't right to go to bed without being able to hear his soft snores coming from his room, or looking forward to his waking me in the morning--or better yet, climbing in and snuggling. Even his giggles over my reactions to his ice cold feet is missing from my life.
I know it's temporary, and I hope that it gets easier until he comes home. Cause right now, I'm not getting anything done outside of work.
I had lots of plans to clean my house top to bottom and purge unused toys and papers, but as of now, I can't even concentrate on reading more than a page in a book or watch a 1/2 hr sit com and pay attention. I know it's only been a few days so I'm cutting myself some slack. I need to start eating regular meals and drink more than coffee. My pee is now orange which I'm sure isn't all that healthy. At least I've remembered to take my mess the last 3 days. That's a step right?
I am feeling very lonely. It's not the type of lonely which can be fixed by being with friends or family. I need Will. I was up till 3:30 this morning and awake by 7:15. This is not because I wasn't tired, I was exhausted. I just can't turn off my brain. It also isn't right to go to bed without being able to hear his soft snores coming from his room, or looking forward to his waking me in the morning--or better yet, climbing in and snuggling. Even his giggles over my reactions to his ice cold feet is missing from my life.
I know it's temporary, and I hope that it gets easier until he comes home. Cause right now, I'm not getting anything done outside of work.
I had lots of plans to clean my house top to bottom and purge unused toys and papers, but as of now, I can't even concentrate on reading more than a page in a book or watch a 1/2 hr sit com and pay attention. I know it's only been a few days so I'm cutting myself some slack. I need to start eating regular meals and drink more than coffee. My pee is now orange which I'm sure isn't all that healthy. At least I've remembered to take my mess the last 3 days. That's a step right?
Sunday, February 5, 2012
Weird kind of day
Not the worst day, and not the best.
Had a big fight with Jason (the hopefully-soon-to-be-ex) lets just say there are many things we will NEVER agree on. Including his choices and behaviors of entitlement surrounding my house etc.
Work has helped keep my mind occupied, but in the quiet moments, I'm right back where I've been most of my time since all this started.
This panicky feeling won't go away, even when I'm busy. Will I ever be okay with him not with me? Will I ever be ok with having to let others take care of him? And I also want to know if I'll ever be okay with him being so happy without me?
Crazy I know, I should be happy that he's happy to be there. It should make me feel better right? I mean part of me does, but there's a part that hurts because he was so willing, so happy to be somewhere else without me. There was no thoughts of missing me, of wanting me over strangers. I know it's silly, but I wonder if others ever feel this way, or if I'm so very different from other parents......
Either way, I'm finding ever aspect of this harder than I realized it would be-- and I was expecting it to be hard.
I spent some time with a friend Friday and was able to enjoy myself for a couple of hours, and even though some of that time was not all about Will, some was, and driving home I felt horrible for having any fun.
I know that's silly, that I need to take this time (at least some of it) for myself and the self care I continually ignore, and I hope to get there, but I'm so not there right now.
I am sitting at work watching tv and wishing I was at SH with Will, or better yet, cuddling with him at home on the couch or playing on the wii and trying to beat him. (he finds that particularly amusing as he really is so much better than I am)
I want him with me, and I want to be able to breathe, just breathe easier.
Had a big fight with Jason (the hopefully-soon-to-be-ex) lets just say there are many things we will NEVER agree on. Including his choices and behaviors of entitlement surrounding my house etc.
Work has helped keep my mind occupied, but in the quiet moments, I'm right back where I've been most of my time since all this started.
This panicky feeling won't go away, even when I'm busy. Will I ever be okay with him not with me? Will I ever be ok with having to let others take care of him? And I also want to know if I'll ever be okay with him being so happy without me?
Crazy I know, I should be happy that he's happy to be there. It should make me feel better right? I mean part of me does, but there's a part that hurts because he was so willing, so happy to be somewhere else without me. There was no thoughts of missing me, of wanting me over strangers. I know it's silly, but I wonder if others ever feel this way, or if I'm so very different from other parents......
Either way, I'm finding ever aspect of this harder than I realized it would be-- and I was expecting it to be hard.
I spent some time with a friend Friday and was able to enjoy myself for a couple of hours, and even though some of that time was not all about Will, some was, and driving home I felt horrible for having any fun.
I know that's silly, that I need to take this time (at least some of it) for myself and the self care I continually ignore, and I hope to get there, but I'm so not there right now.
I am sitting at work watching tv and wishing I was at SH with Will, or better yet, cuddling with him at home on the couch or playing on the wii and trying to beat him. (he finds that particularly amusing as he really is so much better than I am)
I want him with me, and I want to be able to breathe, just breathe easier.
Saturday, February 4, 2012
Good night
I just called SH and was told that Will settled right down tonight and went to sleep easily. I guess third times a charm......
He had had a rough time in the morning, but was doing well by the time my mom and I got there and the rest of his day went great!
It does make me feel better that his bedtime was better, but I still feel panicky and can't sleep ( although I'm exhausted and REALLY need to sleep) this will get easier right? Because its bee three days and it's not easier yet.
I go back to work tomorrow, I'm hoping that spending the day with my clients, throwing a birthday/super bowl party for one and then watching the super bowl (ok, the commercials) will help. I mean it can't hurt right? Now if I could just get a good night sleep, remember to take my depression mess
In the morning {forgot them the last three days} and remember to eat regularly throughout the day and drink my water ( or any ) I'll be doing better.
And people say this is the time I should be focusing on taking care of me...........silly people.
He had had a rough time in the morning, but was doing well by the time my mom and I got there and the rest of his day went great!
It does make me feel better that his bedtime was better, but I still feel panicky and can't sleep ( although I'm exhausted and REALLY need to sleep) this will get easier right? Because its bee three days and it's not easier yet.
I go back to work tomorrow, I'm hoping that spending the day with my clients, throwing a birthday/super bowl party for one and then watching the super bowl (ok, the commercials) will help. I mean it can't hurt right? Now if I could just get a good night sleep, remember to take my depression mess
In the morning {forgot them the last three days} and remember to eat regularly throughout the day and drink my water ( or any ) I'll be doing better.
And people say this is the time I should be focusing on taking care of me...........silly people.
Ellen
Well, I know this is silly, and nothing will come out of it. (should really think positive----must work on that) I wrote to Ellen Degeneris today.
I wrote about Wills struggles (not in a lot of detail) and about SH. Telling her and the show about the amazing hospital with multi disciplines. I asked that she possibly help spread the word about how important these hospitals are. There are only 11 hospitals like this in the country and they are all in the north east. Then I told her because of Wills issues and severe depression I would like an emotional therapy dog. I don't think Will needs would be enough for a psychiatric service dog. Either way I've been told by my case manager it is too expensive for us to get one.
I could have told her I need an etd as well, and a new car, but I thought that might be pushing it.
I will be more than thrilled just to have her help raise awareness about this type of children's psychiatric hospital and the need for more in the country. But one can hope right?
I wrote about Wills struggles (not in a lot of detail) and about SH. Telling her and the show about the amazing hospital with multi disciplines. I asked that she possibly help spread the word about how important these hospitals are. There are only 11 hospitals like this in the country and they are all in the north east. Then I told her because of Wills issues and severe depression I would like an emotional therapy dog. I don't think Will needs would be enough for a psychiatric service dog. Either way I've been told by my case manager it is too expensive for us to get one.
I could have told her I need an etd as well, and a new car, but I thought that might be pushing it.
I will be more than thrilled just to have her help raise awareness about this type of children's psychiatric hospital and the need for more in the country. But one can hope right?
Another visit
My mother and I visited Will this morning, we stayed for almost 45 minutes. He showed us his new room. (was moved this morning) read us a book, and gave us a tour of the ward. Then we were ignored as he happily played with his new roommate and friend. After watching for a little, we said our goodbyes and left.
My mother was so relieved that he was happy to be there. She was imagining him miserable and begging to come home. Now her worry is if he'll want to come home at all.
We stopped and got some lunch then went back to her house to eat. I visited for a short while then headed home.
Well, we will see what this night brings. Hoping since I have to work in am that I can get to sleep earlier and actually get sleep that is restful tonight. Only time will tell.
My mother was so relieved that he was happy to be there. She was imagining him miserable and begging to come home. Now her worry is if he'll want to come home at all.
We stopped and got some lunch then went back to her house to eat. I visited for a short while then headed home.
Well, we will see what this night brings. Hoping since I have to work in am that I can get to sleep earlier and actually get sleep that is restful tonight. Only time will tell.
Friday, February 3, 2012
Another difficult night
So, last night I stayed on the couch till 1am. Went to bed and laid there playing on my phone till 2:30, at this time I fell into a restless sleep. Tossing and turning till 6:45-ish am. Then I refused to get out of bed till 9:30, when I had to drag my butt out of bed to make some coffee for my seriously sleep deprived brain to function. Drank a large cup, then left to have lunch with Will at SH. While there he told me he still liked being there, had a rough night and it was because he hadn't known what to expect at bedtime but he was all good now.
I called SH just a little while ago. He had a great day for the school part but then struggled of and on. Including bedtime. Where he refused to settle again, went to quiet room, started getting aggressive with staff. Had to leave quiet room as someone else needed it so he went in the sensory room and fell asleep there.
So it was still a rough day/night but it was better than night #1. So, even though I know he wants to be there, and things were better at bedtime, why do I find myself exhausted at 12:10am unable to shut my mind off and sleep? I have had way too many nights like this leading up to SH. Weds and last night were the worst. Hopefully it will get better for me too?
Mom and I are going to visit tomorrow morning. I know she's anxious to see him and his environment too.
But what to do the rest of the day? A good friend has invited me out tomorrow night, but I really am not up to a group of strangers, or anyone right now.
I did go to a friends house today for a few hours so that's good right?
Here's hoping for sleep tonight. For me and Will.
I called SH just a little while ago. He had a great day for the school part but then struggled of and on. Including bedtime. Where he refused to settle again, went to quiet room, started getting aggressive with staff. Had to leave quiet room as someone else needed it so he went in the sensory room and fell asleep there.
So it was still a rough day/night but it was better than night #1. So, even though I know he wants to be there, and things were better at bedtime, why do I find myself exhausted at 12:10am unable to shut my mind off and sleep? I have had way too many nights like this leading up to SH. Weds and last night were the worst. Hopefully it will get better for me too?
Mom and I are going to visit tomorrow morning. I know she's anxious to see him and his environment too.
But what to do the rest of the day? A good friend has invited me out tomorrow night, but I really am not up to a group of strangers, or anyone right now.
I did go to a friends house today for a few hours so that's good right?
Here's hoping for sleep tonight. For me and Will.
Long night
After going to bed at 2 in the morning and tossing and turning till 6:45. I gave up the fight and I'm actually awake for the day. I really NEED coffee right now, but seeing as 3hrs have gone by and I refuse to get out of bed, it may have to wait.
Our amazing case manager just called me. We agreed that Wills hard night at SH is a good thing. (even though it breaks my heart.) it means that he's not giving them a honeymoon period and they can see what's going on all the more quickly and start helping him.
That's good right? Thinking I need to get out of bed and get dressed so I can drink some coffee before seeing him for lunch. {They won't let you bring ANYTHING in the hospital. You have to lock up everything, even your keys --but they let you bring the locker key with you? How does that work and/or make sense?}
Our amazing case manager just called me. We agreed that Wills hard night at SH is a good thing. (even though it breaks my heart.) it means that he's not giving them a honeymoon period and they can see what's going on all the more quickly and start helping him.
That's good right? Thinking I need to get out of bed and get dressed so I can drink some coffee before seeing him for lunch. {They won't let you bring ANYTHING in the hospital. You have to lock up everything, even your keys --but they let you bring the locker key with you? How does that work and/or make sense?}
Thursday, February 2, 2012
Breaking my heart
I just called Spring Harbor to see how Wills first day and bedtime went. I kind of wish I hadn't.
He had a rough patch at dinner time. I believe he was upset because he had to eat on the ward and not in the cafeteria. This is standard with new patients I guess. He settled down and ate in his room.
Bedtime did not go so well, he is still awake and screaming. He is on locked seclusion for the moment because he kept going after staff and trying to bite and hit staff.
I know he's where he needs to be, but I just want to hold him and lay with him till he falls asleep. I want to hug him and tell him I understand and everything will get better, but I can't. Cause he's there and I'm here, without him.
He had a rough patch at dinner time. I believe he was upset because he had to eat on the ward and not in the cafeteria. This is standard with new patients I guess. He settled down and ate in his room.
Bedtime did not go so well, he is still awake and screaming. He is on locked seclusion for the moment because he kept going after staff and trying to bite and hit staff.
I know he's where he needs to be, but I just want to hold him and lay with him till he falls asleep. I want to hug him and tell him I understand and everything will get better, but I can't. Cause he's there and I'm here, without him.
Breathe
So, here I am 6 hours and way too much junk food later. My heart is racing, it's hard to breathe occasionally, and I'm lost without my heart. I'm ok when stuffing my face and/or watching mindless tv, but as soon as the commercials come on is when it's hard to breathe and my heart races even more.
I look around my house and its so quiet, and he's not here. This does get easier right?
Is it sad that I'm counting the minutes until lunch tomorrow with Will?
I'm assuming that this will get easier as time goes on, but right now this REALLY, REALLY sucks!
Don't mind my rant, this is the best thing for Will. I know that. I do. It's just an adjustment period I'm sure.
For now I will just breathe........
I look around my house and its so quiet, and he's not here. This does get easier right?
Is it sad that I'm counting the minutes until lunch tomorrow with Will?
I'm assuming that this will get easier as time goes on, but right now this REALLY, REALLY sucks!
Don't mind my rant, this is the best thing for Will. I know that. I do. It's just an adjustment period I'm sure.
For now I will just breathe........
Spring Harbor
I dreaded telling Will about the hospital. I didn't know how or when, so I gave it up to God to decide the when and how. When the time came he was all for it as long as they helped him to not hurt all the time. He's actually been bugging me about when.
We got the call Monday that today was the day. Will could barely sleep last night he was so excited. He helped pack his bag last night. He can take only a limited amount of stuff, but he didn't mind.
I let Will sleep with me last night. (Pretty sure it was more for me than him). It took forever for him to fall asleep, then I spent the night cuddling and listening to him breathe (and snore). We played this morning then left the house. We went to Dunkin Donuts for breakfast with his dad. (thought Will might enjoy it, even though I'm having a hard time being around "dad" lately). I know Will has a tendency to eat fast, but wow! He inhaled that donut and chocolate milk! Then wiped his mouth on the bag!
I spent 4+ hours being bombarded with questioned by the team at the hospital so they can start his behavioral plan. After I went in search of my son, he was hanging in the sensory room having fun. He gave me a hug and told me he loved me and sent me on my way.
I was quite proud of myself. I was upbeat and smiling and joking before and during the meeting. Walking out the door is when I started falling apart. I am now home, and have been for 1&1/2 hrs now. I don't want to be here! I don't want to be anywhere. I want my son back with me.
I guess it's easier knowing he wants to be there, and is getting the help he needs. I can't imagine how I'd feel if he didn't want to be there. So now it's dealing with my own feelings on the matter, however, I'm not real good with that. Guess I better get better at it huh?
That's it for now, I'm going to hibernate for a while, visit Will tomorrow and breathe, just breathe........
We got the call Monday that today was the day. Will could barely sleep last night he was so excited. He helped pack his bag last night. He can take only a limited amount of stuff, but he didn't mind.
I let Will sleep with me last night. (Pretty sure it was more for me than him). It took forever for him to fall asleep, then I spent the night cuddling and listening to him breathe (and snore). We played this morning then left the house. We went to Dunkin Donuts for breakfast with his dad. (thought Will might enjoy it, even though I'm having a hard time being around "dad" lately). I know Will has a tendency to eat fast, but wow! He inhaled that donut and chocolate milk! Then wiped his mouth on the bag!
I spent 4+ hours being bombarded with questioned by the team at the hospital so they can start his behavioral plan. After I went in search of my son, he was hanging in the sensory room having fun. He gave me a hug and told me he loved me and sent me on my way.
I was quite proud of myself. I was upbeat and smiling and joking before and during the meeting. Walking out the door is when I started falling apart. I am now home, and have been for 1&1/2 hrs now. I don't want to be here! I don't want to be anywhere. I want my son back with me.
I guess it's easier knowing he wants to be there, and is getting the help he needs. I can't imagine how I'd feel if he didn't want to be there. So now it's dealing with my own feelings on the matter, however, I'm not real good with that. Guess I better get better at it huh?
That's it for now, I'm going to hibernate for a while, visit Will tomorrow and breathe, just breathe........
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