Thursday, April 29, 2010

Another Evaluation

So, yesterday was the evaluation day for DW again. His therapist called and we spoke with him, DW, and several staff members from nursing and the ward. His doctor and teachers were not available so it was fairly short. Aside from DW's ramblings... this is what I gathered. 
He's doing well - and gained the previously lost level back. We are strongly encouraged to come see him this weekend as a reward. We're going on Saturday. 
He is starting to assert himself with bullies. In a way, we're very glad he's doing this - its a sign that his self worth is growing. In another way, we're a little worried, because when he asserts himself, most of the time it's aggressively, with his hands or feet. Meaning he's hitting or kicking someone. 
There is less imagined bullying that he's complaining about, now when he discusses things that are happening to him they're real, not made up lies, or the voices in his head. This is a very good sign. 
All in all he's improving. It's a slow going process, and will take time and effort on everyones part to see it through. But for the first time in a very long time, we've got some hope. A spark of life at the end of the very long, dark tunnel we've traveled along. We see an end to his torment, at long last some relief for his troubled mind. 
We continue to pray and hope for him daily. Its what we can do. 

Friday, April 23, 2010

A letter to my son

Ah, little man, how we miss you! Your absence creates an atmosphere of waiting in our house - we're going through the motions of life -but we're really not living it... not now, not with you gone. 
I gave your dog a haircut last night - she looks so cute now:
I also gave her a bath, and conditioned her hair - now she's soft and shiny! Of course, she misses you too - we all do. 

When we talked to you on the phone the other day, you said you were acting out because we can't come up to see you more often... We know that you feel hurt, and lonely that we aren't there more often, but frankly sweetheart, we can't afford it... and honestly, the visits are so very hard for us. 
We put you in that place so that you could get the help you need to overcome the things you've been through. But now, you seem to be so resistant to help - they are trying so hard to get through to you, but you've been so programed to accept that everything bad is your fault, and everything good is deserved by someone other than you. You resist their efforts to show you how much more of life you could enjoy if you would just let down your guard and let people in to help you heal! 
You are special... you're smart, funny, energetic, and so charismatic! You could have the world as your oyster if you could get past the issues that plague you from the past. If you would just let us love you, and accept that you are enough just how you are! 
We love you dearly!!! And we miss you BIG!

Wednesday, March 31, 2010

Three Month Evaluation

We had DW's three month evaluation today - seems he is improving to an extent. He is still having serious issues with self-depreciating behaviors like saying he's worthless, or should die. He is also abusing himself either with his hands, shoes, books, or whatever happens to be right there at the time. He has gotten better about interrupting and being loud, so those are good things. 
They have said that if he can continue to improve it won't be long and he will be able to go on "away" visits out to lunch, and possibly come home for a weekend visit soon! 
We're very excited that he is improving as well as he is, and we are holding on to the hope that he will indeed be ready to come home in June!

Friday, March 26, 2010

Update for March...

So DW has been at the treatment facility for nearly two months now... It has been a roller coaster for us, but we're managing. 
We're still looking at a June release date, but have another evaluation on the 31st of this month. So far his reports are all showing "minimal improvement"... the only thing showing true progress is his therapy. I suppose that's good, because only with therapy will he be able to overcome all the issues and move on to learning the social skills and other things he will need to live his life outside our  home. 
While we miss him terribly, and are devastated that he refuses to call us more than once a week - and repeatedly turns down our visits - we know that he's getting the best care available, and that he IS getting better at his own pace. That's what counts to us. 

Thursday, January 28, 2010

Phone Calls

So, DW called today, he seemed to be in great spirits. He advised us that he was having wonderful food, learning algebra, and having farting contests... honestly what more could a 14 year old boy want? 
We spoke with his therapist, and things sounded promising. We have the evaluation tomorrow, not sure when -- more news then!

Monday, January 25, 2010

On the Journey

Friday was the day we delivered DW to his new "home" for the next little while. This was not something that we wanted or something we enjoyed. It was a horrible experience that neither his father or I ever want to have again. However, we do know that at this point in his life, this is what is necessary for DW's overall well-being. We are devastated that he is not home with us, but hopeful for change in the near future. 
We spoke with him Saturday night and things seemed to be ok... the food is good... which didn't surprise me, given he lives for food and would probably eat Ramen 4-5 times a day. The one thing he complained about, and his dad was a little upset over, was him sleeping in the hallway of his unit for the first 72hours. This is done for the purpose of observing their sleep habits and how they interact with others before they assign a room-mate or a room. Good thing, DW is not the best roommate in the world, and hopefully they can find someone he gets along with. 
Otherwise, things seem to be going well for him, he starts school today -- and will be going to school for the first time since October (other than the home-bound stuff). He was very excited for his first day of school and I look forward to talking to him tonight about it.
The facility is nice and the people who did his intake are wonderfully nice, caring, and concerned for him. This is all good! They work on a 'level system' which has 5 levels for his age group. These levels determine his overall participation level as well as responsibility and privileges. Once he gets to a certain level, he will be allowed overnight home visits. However, this part of things is all up to him, and we know how he can be when faced with making a good choice... sometimes he just isn't capable. The downside to the level system is that he cannot return home (without court order) until he has obtained and maintained his final level for at least 30 days. This concerns us, because he seems to always 'blow-it' on the level system, and maintained level 3 at school for nearly a year due to his behavior. The good thing is he is being held accountable for his behavior and seeing his ability to come home and visit as a reward for good behavior and participation, he will try harder. We hope... and we pray... and we worry.

So when you tuck your young ones in tonight and say their prayers, please send one up for my little man! He could surely use all he can get! 

Thursday, January 21, 2010

Around the World in 30 days

At least that's the feeling I get. DW is being admitted to the Devereux Treatment Network facility in the morning. This is typically known as PRTF - Permanent Residential Treatment Facilitation or Facility.  He begins with a 30-day evaluation and diagnosis process that hopefully, will give us some more definitive answers on what his condition truly is. We are hoping that the intensive therapy and evaluation that he will receive during this time will help bring him up a few levels with his social skills and ability to interact with others. If the therapy does what the doctors have told us it might, we could bring a nearly normal (bi-polar) 14 year old boy. It will take long-term social skills training to keep him on course and moving through -- but we are confident that with the help he'll be getting he will be able to succeed. 
He is such a bright, intelligent, sensitive child, that IF this succeeds -- he'll be the next Nobel Prize winner... seriously! 
Well -- for now that's it, more later on his adventures at the facility, for now, mom has laundry and packing to do! 

Friday, January 8, 2010

A day to remember

April 19, 2006 - -a day to remember... the day two little boys came into my world, and stole my heart -- for good! 
It was near summer, and the heat in Georgia and Florida was already bad... my car wasn't the best in the world, and I had little money and less time off from work.I worked full time at the time as a customer service rep at a large firm... and we were just coming out of tax season, our busiest time. But, when the phone call Shawn had been waiting eight years for came... we answered it without hesitation. 
Can you come get the boys? she asked... We have to move and might be in a shelter for a little while in between, and they need to get to know you anyway... she said.
So we hopped in the car, and drove from NW Georgia straight through to Central Florida... about 10 hours. We arrived at about 10 am, since I had to work the day we left and we didn't get out till close to eight that night. I stopped and 'napped' a couple of times, just to keep from sleeping behind the wheel... 
The trip was miserable for Shawn, he hadn't had his second surgery yet and his back was in knots... he could barely walk on a cane -- and sitting in that tiny car for all those hours was horrific for him. 
But it was worth it... every miserable, hot, boring second....
We arrived to both boys sitting outside the tiny trailer... DW was the first to move, he immediately 'swarmed' the car installing this gadget, and that gadget, designed to speed us up, protect us, and guide us on the trip... I couldn't help but laugh at his precociousness... SG didn't move as quickly, it was easily ascertained that he was totally out of his element and very uncomfortable. After all, he hadn't seen or heard from his dad in eight years... his mom had seen to that... he was scared, and reasonably so.
I met her for the first time that day too... and now for all the world wish I had had the knowledge then I have now... she'd not have been breathing when I left there that day. 
The house didn't smell *too* bad, however it was filthy. There was no food in the kitchen... nothing to drink,  unless you count rotten milk. 
I took the liberty of using the facilities while I was there, mainly to check out the other parts of the house. 
The room the boys shared was tiny, big enough to fit a bunk bed, the kind with a double mattress on bottom single on top... no sheets, blankets, or pillows... well -- they might be packed with the boys things... When I got to the bathroom I found a pile of laundry nearly the height of the counter directly in front of the toilet and tub... apparently she'd been trying to find all the boys things... in the laundry.
Her room at the end of the hall (the door was open... I'm not THAT nosy) was immaculate, bed made, everything in place... perfection -- and it smelled good in there too!
Past the nasty laundry, back past the boys room -- more laundry and filth on the floor in there -- no toys?! Maybe they're packed too.... hmmm...
In the living room I perch on a brand new (yes... NEW!) chair and gaze at the brand new computer, 42 inch television, and Xbox. Games for the computer and xbox everywhere... Well, here's where the money went! 
We talked for a short time, getting an update on medical histories, school stuff, etc... we weren't sure how long we'd have them, so we wanted to get everything. And they were still in school for another month...
Homeward bound... finally, we loaded up a cheerful chatty DW, and a sullen and crying SG and off to GA we went. Of course our first stop was the nearest McDonald's for food -- the boys had never been inside a McDonald's, and we were happy to let them play and experience it for the first time. 
Once back on the road, DW happily kept everyone entertained with his constant banter... and questions... SG occasionally engaged with us, asking a question or two - but DW really dominated the conversation all the way home. 11 hours of talking... I don't know how he did it... but I bet he could do it again, every single day!!
After a night of stop-and-go traffic, and 36 hours total on the road, we finally made it home early Sunday morning.... I was so exhausted that dinner was PB&J...
Sunday was spent going through the meager possessions the boys had brought, as well as getting to know them. We determined that a trip to buy clothing was definitely in order... sooner rather than later...
And those blankets, pillows, and toys I thought might be packed... yeah -- nothing. 
The first week was nothing short of a miracle... two very different boys came into our home, and learned some really neat stuff... like how it felt to be full... how it felt to sleep on a bed with sheets, pillows, and blankets...It was definitely an eye-opener for us, because the more comfortable DW became, the more pronounced his issues became -- and by the end of a week, we were in it hook line and sinker... Love that is -- he was and is the most precious of children... and we'll do anything, anything in this world to get him well and happy! 

It has been a long and winding five years. We stand today nearly the same as we did then with DW... two parents on the edge of nowhere -- hoping for a miracle. We're armed with hope, faith, prayer, and love... and we'll fight this battle for as long as it takes... Our precious miracles are worth that, and so much more! 

Monday, January 4, 2010

Conspiracy Theory...

So... we're sitting in our room, and DW comes to the door... "Where is my remote control car"? he asks... well - the last time I saw the car, it was banging against the wall in dad's office. "I had it on the table!" he says, volume beginning to really escalate now... "We don't know" we tell him, "WE" being me, dad, JR, and PJ. Wailing now we hear... "Well, SG says he doesn't know where it is... and you guys say you don't know where it is... Somebody knows something!!!!!" Of course at this moment all of us burst out laughing, SG comes in and states the car was last seen on the dining room table, and he's got no clue. I told DW that it wasn't our job to keep track of his toys, and he went off mumbling about how we have all moved against him to keep him from playing with the car.
Now, we took the controller for this car away two days after Christmas because the antenna was broken and thus a weapon of the most rudimentary kind... great for the "revenge" DW is plotting against his enemies... whom I've not met yet, but apparently they're all around us all the time... given the number of weapons constructed in the bedroom next door -- I'd say they're are quite a few of them too!
I know it's disturbing for some parents to see behaviors like this in a child, especially one that's generally sweet and loving... make no mistake -- you would fall madly, head-over-heels in LOVE with DW if you met him... I know you would, he's that kind of kiddo! His psyche however is a very convoluted thing -- and stuff goes on in his head I cannot even begin to understand, nor explain... that's why he's going into PRTF... the doctors can hopefully figure out what makes him tick... and possibly find something that helps.
We find that DW is an incredibly intelligent, amusing, loving, and challenging child. He's unique in every way from his brothers and sisters... there is nothing about him that's not a new experience each and every day... and the lessons that we learn from him are large, and significant.
We pray daily that hospitalization is not required, that eventually the right combination of medications will make things work... but we know full well that without therapy, DW is lost. With the ability to obtain 30 or 40 hours a week of therapy, DW is going to see his way through his world and into ours... we just know it! Meanwhile, we'll continue to make the best of things, and laugh when we can, enjoy each and every moment we have because after all, memories last a lifetime.

Sunday, January 3, 2010

New days ahead

As I stated in the intro, DW is severely emotionally disabled - to the point of hospitalization twice... and now we are on the cusp of hospitalization again, only this time it's "long-term". Daniel will be placed in PRTF - Permanent Residential Treatment Facility sometime after the 9th of January.
During the time that we've been getting him set up for the PRTF, DW has been unable to attend school regularly because it's just too much of an emotional upset for him. So... on Thursday he starts "homebound" school, where he will go and spend 1-3 hours with a teacher one-on-one at his regular school. This will be wonderful for him as he loves to get out of the house!
On the 11th, we have an evaluation appointment with Dr. M so that he can be approved for the PRTF. Once he's done with that, then we'll start looking at facilities that have space and make a decision on where he'll be.
What a start to the new year...
In other news, SG met up with a friend from school and went to church today with her and some friends, then off to her house to hang out and stuff... he won't be home till around 8 - I hope that he takes this opportunity to branch out and make some new friends, away from his brother and sister! What a day this has been for him I'm sure!
PJ left early today with A. (her boyfriend of nearly a year) to go up to Little River and see the ice. A wanted to take pictures and should be sharing them with me later today... PJ was a little irritated that their day was interrupted because A's friend wanted to take him out for dinner in celebration of his new job. PJ isn't allowed out past 9 on a school night and tonight is technically a school night, so she's a little mad that A might not be able to come back... however, A has to be home BEFORE 9 tonight in preparation for the new job... so - not much of a chance he'll be back.

As day's go it's been good for DW and SG, but from the sounds of "Your about to get grounded" from the other room, not so good for PJ... I guess that's just the way the cookie crumbles... now I've got to go make cornbread to go with my big ole pot of ham and beans! Future recipe to come! ;)

An Introduction to Our Family

Well, as I've said in my profile - I'm almost 44, I am a full-time mom to 7, YES that was SEVEN children. Now before someone blasts me with "how dare you have that many kids this day in age" - 4 of these children came into my life already born and nearly grown to teenagers. They are mine in my heart only... which one day we hope to change via the legal system.

I am deeply committed to their father, and our "ready-made" family. I'm even more committed to helping people understand what its like to cope with a severely emotionally disabled child - and what joys that brings to our lives on a daily basis.

I hope, with this blog to express my joys, concerns, hopes, and dreams - in an effort to show everyone out there that reads it - living with special needs children is a challenge to anyone... but it's also one of the most admirable jobs a woman (or man) can take on. So... with that said - let me give you an introduction to our sometimes dysfunctional family... "We put the FUN in dysfunction!"

I will introduce my children only by initials, please don't ask for names - I don't care to share that information on the web, thank you!

KD - this is my oldest natural child; she's 25 and lives on her own with her boyfriend M in Florida.

JR - this is my only natural son; he's 21 (almost 22) he is planning to leave for Job Corp in a few weeks, which is good because if he doesn't do something to make his own money soon I'm sending him to his daddy.

JC - this is my youngest natural child; she is 18 married and has my a beautiful son named JJ who is the light of my life and my heart... I did not see her for 11 years, and the reunion and restoration of my family has only just begun!
JB - my son-in-law, who lives in KY with JC, JJ, and S&L his parents. Currently he has a full-time job with L (his mom), and hopes that it will be permanent, but it's factory work, so that's not a given.

SM - this is my oldest step-son, soon to be 18 and a parent... yes, he and his girlfriend, M, got in some trouble - but that trouble has produced a beautiful little girl ED. Currently SM and M reside in FL with my wonderful SO's parents W&G.
SG - my sweet middle step-son, recently turned 15, and as with all "teens" he's a handful - he has some severe anger management issues.
PJ - this is my step-daughter, 16 and every bit a demanding, evil, I don't like you anymore, teen aged girl! She was diagnosed bi-polar at 7 and is being treated medically and therapeutically. She is preparing to and apply for her first foray into the workforce.
DW - ahhhh... my darling youngest step-son... He is 14, but in some ways he's only 7 or so... DW and SG suffered horrible abuse at the hands of their mother for 8 years - and DW has been diagnosed as PTSD, Bi-polar with psychotic tendencies, ADD, OCD, and PDD (for those "not in the know" PDD is Pervasive Developmental Disorder - not otherwise specified) Atypically, this is Ausbergers Autism.
We are also the proud owners of several "fur babies":
Bosco - our wonderfully dumb 2 year old male lab/boxer mix... he's very protective of his family, but a big ball of love!
Lilly - PJ's dog, Lilly is about 2 years old. She's a full blood German Shepherd with a serious "people" phobia. Once she gets to know you, she's sweet as she can be, until then... don't look or she'll run... but she's under your chair!
Grace - our 5 year old "Grand Dame" of the family, she's a Miniature Pincher by breed - and a Rottweiler heart.
Kittie, a rescue from a friend she is a cat in doggie clothing! Kittie climbs curtains, sleeps on top of the sofa, and loves to lay on the fireplace hearth to sleep. She's our comic relief, and in some ways DW's best friend.
Tucker - PJ's cat... Tucker is also fondly known as "starey cat" because of his penchant for starting and winning staring contests with the children.
Shakespeare - JC's cat - he's got ice blue eyes and is sortof like a short-hair Siamese, with a raccoon tail! He's an angel and we'll miss him when my son finally takes him to live with him.
Magi - the Queen of Cats... She's 11 years old, after losing her life partner, Bagheerah, in an accident 7 years ago she's been a sad "old lady". She never bonded with any other cats or humans other than my son or I -- she's the grandma of the bunch and cause for lots of opportunities to clean.

So that's it by way of introduction and quite enough for a first post. I look forward to your comments and visits, and hope with all my heart that something here sticks with you, and helps in some way.