Saturday, April 24, 2010

No filter between brain and mouth!

I am in the grocery store today and I got on line behind a youngish woman (I'd say around my age). She was purchasing numerous items, but one stood out - it was a huge Whoopie Pie the size of a dinner plate. The teen who was cashiering asked her jokingly if it was her dinner...she replied that she is allergic so she couldn't eat it....then she looked directly at me....looked back at cashier and said, "besides it would make me fat and that isn't good".....coincidence that she happened to look at me and then make that statement? No, I don't be thinking so!


I was infuriated! What is with people? Lack of filter between brain and mouth? Lack of brain? No couth whatsoever!



So today's arsehole award goes to the broad at the grocery store!!! Eff off!!!


Photobucket

Wednesday, April 21, 2010

Car woes.....

You know sometimes I think cars are more trouble then they are worth. We had both vehicles repaired back in February. I have a whole new appreciation for the Amish and the horse & buggy. We have a budding Amish population around here and it's nothing to see a horse & buggy in front of you on Main Street.

Anyways, yesterday when I was out taking Trevor to the appointment with the OT and the darn "check engine" light came on. It's happened before and it freaks me out. I start imagining the worst....big dollar signs flash in front of my eyes and I can't help but worry.

Now, Karl used to be an automotive technician, so I try not to worry when he tells me everything is ok, but it doesn't always work so well.

So what do I do? I do what I do whenever I start worrying about anything...I turn to the Internet! LOL!!

I came across this cool site - RepairPal. RepairPal gives you ratings for things like: mechanics, repair estimates, user reviews and so much more. I don't know how I never have stumbled across this before. Anyways, they have this neat encyclopedia feature, so I used that to see what the "Check Engine Light" could mean. It had some really useful information. It gives you four different scenarios of what the "check engine light" could mean and then what you can do about it.  And best of all my mind was put to ease because the light only came on for a few seconds and then went off. I didn't see anything that would lead me to believe it was the problem with my car.

Truth be told, I'd love a new car....well, not new as in "new"....but new as in new to me. I'd like a bigger car, maybe even an SUV. Right now we have a Ford Taurus and a Ford Ranger - both are rather small vehicles. All I know is I want something reliable. Karl has another truck that is being stored at his dad's house - a Toyota pickup and that truck is amazing - over 20 yrs old and it looks incredible. Karl has always been a huge fan of Toyota. I know lately Toyota has been under fire for their recalls, but I kinda admire them. I mean, they called that recall before the govt did. They didn't wait till it was a matter of having to, they did it on their own. That impresses me. I saw an 02' Camry for sale the other day - good price - though it's smaller than I'd like. I used RepairPal to check out the ratings for the  02' Camry - so cool - can check out reviews, recalls, ratings, etc. But I just don't think that a car is something we can do right now....think we'll continue to just keep our eyes out and maybe the right vehicle will come along. I do know that when we decide to really get serious about car buying, I am going to insist we check out RepairPal again!

You really need to check out RepairPal - there is such a wealth of knowledge available, whether you are trying to find a decent mechanic, and Lord knows we all need one of those.....or you are trying to find reviews on a vehicle you are considering purchasing.....or you want to check to see about recalls and other issues that are car-related.

Photobucket

Clothing....

I decided to get out Trevor's summer clothes from last year to see what would fit him now. Out of about 10 pairs of shorts, he only had two pairs left that fit. I guess I know what I'll be doing next week - shopping for summer clothes. We got lucky - Vicky is still small enough that she can wear most of last years clothes again. But, who am I kidding - you know, I'll be buying her some new summer stuff too. Shopping for little girls clothes is so much more fun that shopping for boys clothes.

And then there is the issue of needing some clothes myself. I hate to spend money when I am not happy with my weight right now, but I can't exactly go without clothes, can I? LOL!

I started doing some searching today and came across this website for clothing & accessories. At Become, you can search and do comparison shopping all at once. I love that! I don't know about anyone else, but I hate wasting my times searching numerous websites trying to find who has the best price. I found some cute denim capri's from the Avenue and a fabulous pair of Seven 7 jeans - I didn't even honestly know that Seven 7 made jeans for plus size women, go figure.

I didn't stop at looking at jeans/capri's though....I mean I was searching for clothing & accessories....and it was time to check out the accessories...I am a handbag/purse girl....just a week ago I found a $40 handbag @ Sears for $5.00 on clearance...but I digress....back to my point....lol....I started searching for handbags - sigh...found this Cole Hann handbag that I'd die to have but at $375, I don't foresee me getting it anytime soon. LOL!

If you get a chance, check out the clothing and accessories at Become. The site is very user-friendly and you'll find just about anything you are looking for.



Photobucket

Tuesday, April 20, 2010

Lady Liberty I am not.....

Give me your tired ...your poor...your dark eye circles...your droopy eye lids....your uneven skin tone....your excess weight...your badonkadonk butt....your jello thighs...your tired feet....your dry hands.....your processed hair....your flappy arms....your cankles....your gray hairs....your chin/lip hair....

well that about sums it up for me.....I am a mess....in and out.....luckily the public isn't able to see the inside mess, lol, but they sure do get an eyeful of the outside mess....

I need a makeover - head to toe. I need someone to show me how to do my makeup to play up my features and hide the dark circles and bags under the eyes. I need someone to show me how to best wear my hair. I need someone to show me how to dress this crappy body till I am able to change it.

....I just need a makeover....plain and simple.....



Photobucket

Updates Galore!

Yesterday we had our first appointment with Trevor's new psychiatrist. She is located just a few doors down from the hospital that Trevor was just at. Karl was a bit apprehensive - worried that this wouldn't go well. Well, he couldn't have been more wrong. The new doctor is FABULOUS! She is funny, she has a great personality, she is good with Trevor, she is knowledgeable. It was such a relief! Phew!!!

She isn't going to change any of his meds at this time, since we are seeing such great changes, she doesn't want to mess with what is working! Woot! She doesn't feel we need to even consider the Prader-Willi anymore, because with the removal of one of his other meds, his appetite is getting back to normal and he's loosing some weight. Phew again! Another weight lifted off my shoulders.

So unless something comes up between now and then, we don't need to go back for 6 weeks! Thank goodness!

Today we had our first meeting with the Occupational Therapist. Everyone I talk to, can't stop singing her praises! From what I've been told, she's the best around here. I love that, because I want nothing but the best for Trevor and that includes his providers!

She did some testing with Trevor - some written and some physical. I have to admit, that some of it was painful to watch. It's hard to watch your child struggle with something as simple as catching a ball - esp when his 2 yr old sister can do it with much greater ease. I am so worried that he's going to get picked on as he gets older and the kids start noticing his "quirks" and differences more. I don't think I can possibly bear to see kids picking on him. When she tried to play catch with him, he was so stiff. He doesn't follow the ball with his eyes - he just cups his hands/arms in this awkward position and stands there stiff. She had him try to throw the ball at a target - a rather large target and he couldn't hit that either. She had him try to do jumping jacks - again, he just isn't coordinated enough to put the movements together. He started complaining how tired he was and how hard that was.

Anyways, that's just a sample of how things went.

She said he's very anxious - stresses himself out about things. He has low muscle tone - very floppy and yet at times he gets so rigid because of it. In the end, there was more, but right now it escapes me and I don't have the notes in front of me.

She said he has "Sensory Processing Disorder" with the focus on the vestibular system of the inner ear, which affects balance and gravity response, and muscle tone.

She gave us a list of things to do/read/get and start doing all that and she is going to work him into her already full schedule.

She said right now to not even think about sports - I thought maybe a group sport would be a good idea for him, but with his lack of coordination, low muscle tone, that fact he has no idea of where he is in terms of space, the fact he doesn't focus on the lower quadrant, she said it would not be a good idea. She said if anything, just try to see if we can get him to try a bike.

All in all, it was so nice to have a confirmation of the things that we suspected. It was nice to leave knowing I am not crazy. I am not imagining it.





Photobucket

Incredibly Proud

On Tuesdays and Thursdays, Trev has a worker that comes in to well....work with him. C takes him out in the community and they work on areas like safety, etc. So they came back last week after having been out and C said Trevor called him out on his smoking. C assured me that he never smokes in front of his clients. I wasn't worried - he doesn't cross me as the type to do anything like that in front of his clients, so I was not worried. But anyways, we talked about smoking and how Trev knows that is what caused my dad to die last year. Trev and I have talked about how I even used to smoke and quit, etc.

So today C arrives and we are all sitting at the table and C says that because of Trevor he went to the doctor. I was confused - thinking what could Trevor have done that would cause him to go to the doctor. So he went on to explain that it was something Trevor said last week. So with that he pulled out the medicine from his pocket. He went to the doctor to get on medication to quit smoking. He's been smoking for I think he said 25 yrs, and here between last Thursday and today, because of Trevor, he went to the doctor to work on quitting. Trevor told him last week that if he keeps smoking, he'll die. And that was exactly what C needed to hear. It made him think of his own 11 yr old daughter and really hit home for him.

I am so incredibly proud of Trevor. He made an impact in someones life without trying....without preaching (as we adults sometimes tend to do). He just simply stated the facts. My dads passing has been very hard on Trevor and has left a lasting impression on him. And he likes C enough to not want him to die from smoking.

Isn't it amazing how sometimes it finally takes something spoken so matter-of-fact from the mouth of a child to wake us up and shake us and make us take stock of our life?!



Photobucket

Sunday, April 18, 2010

New Blog

I have started a new blog - to blog about my journey in weight loss! If you are interested, check it out! I am just getting started!

And without further ado: Confessions of a Fat Girl Gone Wild

Photobucket

Medopause

Medopause!

Yes, I know I spelled it incorrectly!

I did it on purpose.

I've coined the phrase "medopause" to describe this medicine induced menopause I am experiencing right now. I say I've coined the phrase, but truth be told, I don't know if someone else did it before me. LOL!

I do not like this one bit.

Hot flashes - my life consists of one hot flash after another. I can't get cold enough.

Do you have any idea how embarrassing it is to constantly have sweat dripping from your brow? Yeah, it's not sexy in the least. Soaking through your t-shirt isn't cool. There is nothing "hot" in getting up from the computer to find your pants wet from the back of the legs down to your knees. There is nothing glamorous about this at all. I imagine that real menopause is like this and I am not to thrilled with the idea of going through this all over again down the road when actual menopause hits.

The other night I was washing dishes and it hit me ...so I opened a kitchen window and went about finishing the dishes. I stopped to fill some ice cube trays and in the process had to remove some things from the freezer to make room.

After that I went to bed....next morning we get up and come downstairs and it's FREEZING. Ok, to them it was freezing, to me it was pure bliss! Come to find out it's 32 degrees out and I had left the kitchen window open! LOL! Then I turn around and see I had left peas and french fries out on top of the freezer - Karl chuckled and told me not to worry because it was so cold in the house, they were fine! LOL!

I am sitting here now quietly blogging while waiting for Vicky to fall asleep and the sweat is rolling down my face and I am not even doing anything strenuous. Ewww!!!

I am dying to have the air conditioners put in! LOL!!

And to think I only have another 5 months of this treatment.......


Photobucket

Saturday, April 17, 2010

How do you explain....?

I've often wondered at what point would we need to explain to Victoria that Trevor has Aspergers Syndrome. I knew that there would come a time in the future when she was older, that she might question things or maybe it would just be obvious to her that something was different between them.

But this week there has been a couple incidents in which I've wondered how do you explain Aspergers Syndrome to a 2.5 yr old?

Trevor has never been overly affectionate - when he does want to be affectionate, it's on his terms. But he's not one for lots of cuddles and hugs and kisses. Earlier this week Victoria wanted to hug him and he freaked out - not a tantrum or anything like that, but raised his voice and moved away from her. He didn't want her touching him or hugging him.

Tonight it was the same thing - she went to hug him and he crawled away from her (they had been playing on the floor.) He got angry and pushed her away. She immediately went and hid in the corner bawling her eyes out. She just wanted to hug him. And no matter how we tried to explain it to him, he was having none of it. He ended up going up to his bedroom to play and came down again a short while later. She immediately ran over to him to hug and kiss him and he denied her again. And once again, she was heartbroke. I had to comfort her. But I was at a loss - how do you explain to a 2.5 yr old, that her brother doesn't like hugs and kisses? The very brother who she adores and thinks the sun and moon set on?

I am a very affectionate person - I am constantly hugging Victoria and giving her kisses and she takes after me in that sense. I suppose in a way I go overboard with her in that sense because I never had that with Trevor. Trevor never really was a cuddler.....he was never very affectionate. I can only think of a couple incidents where he'd let me snuggle with him - otherwise he was very independent and didn't want to be touched. Seems the older he gets, the more he makes his displeasure known. He is very sensitive to touch - what seems like just a regular old hug to me, will seem like it's suffocating him. It's such a fine line to find the balance in what is an acceptable amount of touching pressure. On the other hand, Vicky's always cuddled me - she has slept in my arms at times right from the beginning....she nursed till 16 months and was coming to bed with me every night....even now at 2.5 yr old, she'll wake up and come into our room during the night and we cuddle and go back to sleep.

She's just so little and while she's wicked smart, she doesn't understand why Trevor won't hug or kiss her. And I am at a loss at how best to explain it to her.



Photobucket

Friday, April 16, 2010

Child Abuse Awareness

In addition to April being Autism Awareness Month, it is also Child Abuse Awareness Month. I asked my dear friend Sherri if she'd do a guest blog spot to bring to light Child Abuse Awareness here on my blog.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

With the 6th "anniversary" of my oldest son Dwight's abuse now behind me, I think it's time to start focusing on the coming month.
I humbly ask everyone to wear a blue ribbon on your shirt, coat, purse, anywhere that can be seen throughout the month of April to help spread the awareness.

In 2007, there were an estimated 1700+ deaths due to child abuse and neglect and over 40% of those deaths were children under the age of 1. (Info from http://www.childwelfare.gov/pubs/factsheets/fatality.cfm)

 
Just think.... how many more children suffer abuse each year that don't die??

 
For those who don't know my son's story, Dwight was only 3 weeks old when his biological father shook and threw him on the couch to make him stop crying. Dwight had grand mal seizures and a stroke that nearly cost him his life.



Instead though, he was spared but now lives life bound to a wheelchair with many severe disabilities and health issues



He is solely dependent on a feeding tube in his stomach for his survival as he cannot swallow correctly which keeps him from enjoying food by mouth. He will never run around with his little brother, play sports, or do anything that a normal child will do due to severe developmental delays and brittle bone disease.



The only true pleasure Dwight gets in life is from listening to music and the noises around him because he is blind.

We need to get the word out about child abuse! Anyone can be a child's hero by stepping up and stopping the abuse however you can!



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you Sherri for sharing your story. Dwight is such an inspiration to all those who meet him!



Photobucket

Another perfect example!

I have to share another perfect example of the difference in Trevor now versus pre hospitalization. At lunch time today, Karl was on the computer looking at Google Maps, and Trevor went over to see what he was looking at. Trevor became quite interested in it. Karl had to get back to work (he has an hour lunch break and work is only a couple minutes away, so he's able to come home and see us every day) and Trevor sat down and started playing with it. Trevor used Google Maps for about 2 hours straight. Now, I know for the neurotypical child this wouldn't be something that would bring joy to a parent. What parent wants their child sitting in front of a computer for two hours straight? But for Trevor, this was amazing. He's never had the attention span to sit at the computer for that long before. He's always loved computers - he started using it before he even turned 2 yrs old. By 3 he was able to download and install programs. He's just a natural. But he just couldn't focus on it for that long. With the right medication, he's now able to better focus. I am still amazed - 2 hours focused on one thing. He navigated all over our town - checking out different places - different landmarks.

His support workers have also taken notice of the difference in his attention span. On Wednesday, his worker D brought over a big keyboard and amp. He played on that for about 30 minutes. Then they went to the library where they played a game and used the computer before checking out a book. She said this morning at our group meeting that normally she is trying to find things for him to do and "wrangle" him in because he's all over the place, but not anymore.

I am so happy with the direction things are going in. It's such a relief to me. But most of all, Trevor deserves this. He's been through so much ...he deserves to be happy and in better control of his mind. It's got to be hard enough to not think like everyone else, but then not to have the right medications and such....I can only imagine what it was like for him. But really he just deserves this so much!




Photobucket

Thursday, April 15, 2010

Progress

So, Trevor has been home since Monday afternoon and things for the most part have gone rather well. I am happy to say that he has *NOT* once tried to leave the house. This is huge ...monumental really! He asks now if I can take him out (or if Karl can). And when he's been told no, he hasn't had complete meltdowns. We've been able to redirect him and get him on to something else.

Now that is not to say that everything is peachy....because it isn't by any means. For example, tonight he punched me in the head. He was mad and next thing I know I am being punched. I stayed calm and immediately sent him to his room for a time out. A short while later he came down and apologized. Did you hear that? He apologized! On his own accord!!! A genuine apology. And then at bedtime, he gave me a hug and apologized once again on his own accord. Again, this is huge. In the past we've had to prompt him to apologize to whoever he happened to hit...and honestly, quite often it would be a half-assed "sorry" said in a hurry....but this was different. This is progress!

So yeah, things aren't 100% but things are definitely improving!!! And really, that is all I can ask for!!!

On another note, Trevor came home yesterday with another stellar report card. He is so incredibly smart and I am so proud of him. He went right back to school and picked up where he left off. He really amazes me!








Photobucket

Tuesday, April 13, 2010

Who is this boy?

I swear this boy has grown so much while he was away! I haven't measured him, but I would venture to bet he's gotten taller - he just seems taller! And he's lost 5lbs while he was in the hospital! And then there is the hair that has grown out - normally he had it buzzed, but now it's longer and he's asked to keep it that way! And he's reading more now.

So many changes....so much growth....

He looked so incredibly handsome this morning as he left for school. Talk about a kid excited to go back to school. We offered to let him stay home today - give him a day to "unwind" - but he wanted to get right back to school - what a good kid!



Aren't they positively adorable & so happy together?!




Photobucket

Monday, April 12, 2010

I've got my baby home!!!

Trevor is home!

God, it feels so incredibly good to say that! Trevor is home!!!

Almost 5 weeks later and we brought him home today! I wish I had had a camera to take his picture when they told him he was going home today. He was in shock and so surprised! He just kept hugging me and talking about how much he missed me. It was incredibly sweet!

We've noticed changes in Trevor today since he's been  home - all for the good. I am hoping and praying that this isn't the "honeymoon" period and that these are real changes that are here to stay! It's been amazing to see the difference to be honest. He knows he can not go out without an adult. He asked us right before dinner if he could go out tonight with *us* and because it was so close to dinner and it's been a long day, we told him not today, but that tomorrow if it was nice, we could play outside. And he was bummed but he was able to be redirected rather easily. There was no meltdown at all - not even a hint of one! Hallelujah!

They say "absence makes the heart grow fonder" and I have to say that being away from Trevor this past month, my heart is about to burst with all the love I have for him. And then to see how excited Victoria was to see him - talk about sweet! Watching the interaction between a 6 yr old and 2 yr old who haven't seen each other in a month is priceless!

Tomorrow he starts back up with his support services. And then on Monday we will go back up to the hospital to meet with his new psychiatrist. There isn't anyone here locally, so they were able to find a child psychiatrist up there who was willing to take a new patient. Woohoo! It's all falling into place!

Life is good! We are all together again! Doesn't mean there won't be other trials along the way, it just means that we got through this one together and together we can face anything that comes our way!





Photobucket

Friday, April 9, 2010

The 24/7 Mom » Blog Archive » Stuffed Toy Hammock Review/Giveaway#comment-13324#comment-13324

The 24/7 Mom » Blog Archive » Stuffed Toy Hammock Review/Giveaway#comment-13324#comment-13324

Another fabulous giveaway to check out - head on over to the 24/7 Mom's blog and enter to win! Don't miss out on this one!!!

Photobucket

Tears of joy!

I can not begin to express the amount of joy in my heart tonight as I come here to post that Trevor is coming home. Yes, we are going to have a homecoming! My baby boy will be coming home MONDAY! This has been an extremely long month for all of us and to see the light at the end of the tunnel is amazing. This has been one of the hardest months of my life....I am not sure if I can really sum it up in words how difficult it is to have your child away ....how difficult it is to walk into a hospital knowing you are there to admit your 6 yr old child...seems the right words escape me. It's one thing to know you are taking your child in for a procedure to be done and they will be out in x amount of days...but it's a whole other ballgame to walk your small child into the hospital knowing you are voluntarily having them admitted into a psychiatric unit. Others may judge us, but doing what we did was not easy and no decision ever is. But at the end of the day, we did what was best for the whole family.

We had another meeting today and they said they felt it was best to discharge him on a weekday, so that his services could start right back up. If they did it today, then that would leave two days without the support for us and him. And as much as I'd loved to have brought him home tonight, I think it makes perfect sense. He will come Monday and we can spend the rest of the day helping him transition back into the home, settling in, unpacking, unwinding. Tuesday he'll start back to school and in the afternoon his 65HCT worker will be here to start right back in on the support services. We've got a team meeting scheduled for Friday with his support workers and case manager here at home. It's nice to know everything is falling into place and we won't be left to flounder for days while everything starts back up.

We spoke and decided it would be best not to tell Trevor that he's coming home Monday. As I've mentioned before, Trevor has no concept of time. I felt that telling him three days in advance would be a cruel thing to do when he isn't able to grasp what three days is. I knew it would cause him to ask all day long would he be going home and I knew that when he was told "no" it might have the potential enough to upset him to the point of needing a time out and I just don't have the heart to do that to him. So as it stands right now, he knows we are coming up for another meeting Monday - only this time we'll be taking him home with us.

We will be a complete family again!

I've waited what seems like forever to say that!

Thanks to all my friends for the support during this time. I know that so much of my blog and my Facebook status messages have revolved around this and I thank you for listening to me, sticking by me, and understanding and giving your support. It has meant so much to me!



Photobucket

Thursday, April 8, 2010

Dave Ramsey, Budgets, & Coupons (OH MY!) « Designs by Megan Turnidge The Blog

Dave Ramsey, Budgets, & Coupons (OH MY!) « Designs by Megan Turnidge The Blog


Want to win Dave Ramsey's - "Total Money Makeover"? Head on over to Megan Turnidge's blog and enter for a chance to win and read about her journey into couponing and budgeting!

Photobucket

Tuesday, April 6, 2010

You've got to be kidding me....

I called the housing manager this morning in an attempt to light a fire under their butts in regards to getting the deadbolt locks installed. His coming home from the hospital is partly contingent on these safety measures being put into place.

So I left a message and mentioned how we've been waiting for the deadbolt locks and cabinet locks to be installed. The housing manager called me back and said that they had talked (her and the executive director) and we couldn't have deadlocks as it was a safety issue. I nearly flipped my lid. We requested the deadbolts a month ago - were told we had to fill out a form and then get a letter from the pediatrician stating the need for said locks - we did that and dropped it off about 3 weeks ago. She goes on to say it's a fire hazard. At this point I am on the verge of tears and just downright loosing it...so I said, it won't matter if there is a fire, when he's laying in the middle of the street dead from running out and being hit by a car. She said she'd talk to the director again and he'd be in touch with me.

In the meantime I call the social worker up at the hospital and explained to her the situation and she said she'd call them and see what she could do. I then called Trev's case manager and left a message - thinking I'd have her call them as well and see if she could talk to them. At this point, I am thinking, I'll call the Americans with Disabilities and contact a lawyer and will do anything I have to in order to get these locks installed.

A couple hours later the director showed up at my door to talk to me about the locks. He said he had called me two weeks ago to talk to me about this. Now I don't know who he talked to, but he didn't call our house. I would obviously remember talking to him about the locks. He suggested that maybe Trev's case manager answered the phone saying she was me....no one answers the phone but Karl or I and even Karl hates talking on he phone, so it's 99.9% me. He says they can put in the locks but they have to have a copy of the key so they can get in if there is an emergency. OMG seriously? You can have 250 copies of the key for all I care - I have nothing to hide - I simply want to be able to keep my child safe. He says they are going to have to get new doors ...yada...yada...yada....it will be a week or so. Fine. He says they have to be their locks so they can have the key - again fine! Trev's case manager had purchased some for us, simply so that they (housing) didn't charge us an arm and leg for them. The director assured me they wouldn't charge us. Again...fine! Just get it done!

About 45 minutes later he returns and says they might be able to just get a new door handle lock that will have a key on both sides, therefore not having to wait for new doors. He wants to know if that will work. Yes, that will work - as long as it's set up so that he can't get out because there is a key lock, then I don't care where the minor details - just make it happen!

So that is where we are at...I don't care like I said if they have a copy of the key....I don't care if they need us to sign a waiver that we understand that we are liable if something were to happen to us and we won't hold them responsible....I don't care if the lock is a separate deadbolt or a lock on the actual handle - I just don't care - just get me the damn lock so my son can come home and be safe!

My emotions have been all over the place today - crying over this...crying over Trevor....you name it....I just need something to fall into place and work out for us.....





Photobucket

Another update!

I want to start off by apologizing - I am afraid I might be all over the place today with my thoughts and for that I apologize.

I really wanted to blog last night about what took place but in the end I was so upset and depressed, that I went to bed early and said the heck with it.

Yesterday morning we had another team meeting at the hospital for Trevor. His case manager wasn't able to be there, but one of his support workers was able to come and the supervisor for the other support worker was on the phone for the meeting. The Dr. that was filling in and was supposed to be gone was actually still there yesterday. (The new one starts today.) The social worker briefed us on Trev's behavior during the last week - he's had some issues with transitioning (mainly because he doesn't understand the concept of time), and that has resulted in him having some time outs in the time out room. He's also been refusing to wear his nighttime pull-up as well as to use the bathroom before bed. I didn't honestly realize he was still wearing one since he's been on the medication to stop the bed wetting.

So this Dr. doesn't feel he has a mood disorder or IED, he feels this is all just Aspergers/ADHD related. He has put Trevor on another medication that he's had good results with - it's to help curb in the impulsiveness. So he's on a mood stabilizer, this med for the impulsiveness, the bed wetting med, something for the ADHD and his sleep medication. So much for thinking he'd be on less meds by the time he came home. Sigh....

This Dr. felt that they have done all they can for Trevor and that he's being affected too much by another child there - Trevor is easily influenced by others and the Dr. even went so far to say that at times Trevor is provoking this other child to act out by his own reactions. What I tried to get them to understand is that this is nothing new. Trevor is very much affected by even Vic's behavior - you know Vicky is at the age of temper tantrums - the terrible 2's and when she has one - it can end up causing Trevor to have one. The idea that this is happening up there at the hospital is not new. The Dr. doesn't seem to have much faith from what he said in the medication the first doctor put him on. And he thought that the med he put him on, needed to be upped.

We discussed the possibility of Trevor coming home and what services will be in place for him when the time comes. The Dr. felt that Trevor would do better at home. Things need to be in place before Trevor can come home - things like housing maintenance installing the deadbolt locks on our doors - something we've been waiting 3+ weeks to have done.

After the meeting, we stayed and talked to the social worker for a bit. One of the services Trevor gets at home is called "Section 24" - (though I think it just changed to Section 28 or something or other). This person comes in and works with him (and us) in the home and in the community for so many hours per week. I have some issues with this:

1. We were granted 12 hours - up to the point that Trevor was hospitalized, his worker was only coming about 6 hours a week. Why are we being shorted 6 hours? He needs the help, so why not give him what he's entitled to and granted by the State? I did discuss this with the supervisor and her suggestion/solution was to possibly add a second worker to come in to make up the hours. We talked with the social worker yesterday and we all feel that adding another worker into the mix is going to be too much for Trevor. As it was, his worker was getting here 15 minutes before he even got home from school - so that was 15 minutes being wasted and then more time wasted when he got in and ate his lunch. The time actually spent working with Trevor, was greatly reduced. I finally put my foot down and asked them to come an hour later, in order to give Trevor time to come home, unwind and have his lunch.

2.The other issue we have is this - we saw an advertisement in the paper for the job of the person who comes in to work with kids like Trevor. The only requirements are 18 yrs of age and high school diploma. So the people coming in to work with Trevor or take him out in the community, are not required to have any sort of schooling or degree or training in working with kids like Trevor. That is very concerning to us. This is a person who is coming into our home to tell us how to change Trev's behavior but they have no background in this? etc? I was mistakenly under the impression that these people had schooling/degree in these types of issues. This really bothers me. I, as his mother for 6 yrs and 34 years old struggle daily with him, what 18 yr old is going to be able to come in and be able to do what needs to be done, when they are barely an adult themselves?

The Dr. gave us a 4 hour pass so that we could take Trevor out to assess how he is doing. Can you believe it was his first time out in a month? His first time feeling fresh air in a month...wow! He was so excited! We took him out to lunch at Subway....there aren't many choices up there in "small town America". And then we went into a couple stores and let him get a "treat" - a tiny notebook and pen. He's not allowed to have much while in the hospital, so his choices were limited. Unfortunately, we were only able to have him out for two hours. See, Victoria was being watched by my mother, and she had a ladies church meeting to attend, so we had to get back home to get Vicky. To say I was upset is putting it mildly....I can't understand why one meeting couldn't be missed, so that we could have more time with Trevor. You can't imagine what it's like to have your child away from you for so long and you finally are given the opportunity for some good quality time and then you can't have it. I honestly will never understand my family and how they treat others. Lately it's been a struggle to get anyone to watch her ....they expect us to travel 1.5 hours for our team meeting and then come right home without spending time with Trevor. Oh that's right,we are supposed to "demand" they change their visiting hours to accommodate us because my family is too self centered to watch Victoria for any longer then they have to. I remember when we were talking about moving up here, and all I kept being told was how they'd watch the kids - how this is what family does - help ....it's such a laugh ....it's like pulling teeth to get any of them to watch the kids. And when they do, it's all about what they get back in return. Nothing is ever done just out of kindness.

So, we have another meeting on Friday morning - there is the *slight* possibility that Trevor could come home. It is all dependent on what the new doctor thinks about Trevor's case and if the locks are put on our doors here. Until then, everything is up in the air!



Photobucket

Thursday, April 1, 2010

The EEG

Oh what a day! Let me just say I am exhausted! I kept Victoria up till 10pm last night - mind you she normally is in bed at 6:30pm. By 9pm, she was openly expressing how tired she was and her desire to go to bed. I wanted to grant her that wish, but knew we had more time to go. Then we were up at 5am this morning. It was a tough morning because she wanted chocolate milk and she couldn't have it because of the caffeine in the chocolate.

We were just about ready to leave for the appointment, when I realized she had pooped. So I stop to quickly change her, only to discover she has diarrhea, so she was a mess. Now I had to run and find a clean outfit to put on in a flash, so we could get out the door and be on time. 

We got there and registered and were taken back to a room. I had to hold Vicky while the technician measured and marked her head with a wax pencil in numerous spots - seriously, she moved the measuring tape here and there and marked over and over. From there, I was to lay her down on the table, and she would place the electrodes (is that what they are called?) Unfortunately, Vic wanted nothing to do with laying down. So the technician offered to leave for 10 minutes to see if I could settle Vic down and maybe get her to drift off. In the end, she was gone about 25 minutes (she checked in once and left again) and I still couldn't get her to calm down - I tried it all - singing - talking - giving her a handheld Yahtzee game - rocking her - you name it, I tried it. She wouldn't settle down, so our last option was to swaddle her and me hold her in place, while the technician put the electrodes on. Vic cried and cried and screamed and screamed...oh and kicked and kicked....how could I forget that?! I had to hold her down and just stay strong emotionally - I knew she wasn't being hurt but it was hard to listen to that crying. But I knew if we didn't get it done, we'd have to do it again and it wasn't going to get any easier the next time. So I stayed strong and the technician told me that at any time I wanted to stop we could...but we went on. I kept rubbing her arms while talking so softly and calm, trying to get her to settle down and go to sleep. Once all the probes were on, she wrapped her head in gauze and Vicky finally gave in and drifted off to sleep with me rocking her on the table and rubbing her belly, while "shhhh'ing" her.

The technician recorded her for about 20 minutes of sleep, then they turn on this strobe light and that blinks while she sleeps and they record to see if it has any affect on her. This happens I think it was 4 times, each time the flashing would get faster. Truth be told, I was afraid I'd have a seizure because it was so bright and fast.

Then, she had to wake Vicky up and record her waking up....oh vey....do you know what it's like to wake an extremely tired toddler? It's not fun! They do not wake up in a pleasant mood to say the least. She was pissed - no ifs, ands or butts about it.

But we got it done and hopefully it will be enough to see what is going on. She said it would take about a week to get the results - why it takes so long is beyond me. I'll be on edge until then. But I guess that is par for the course these days - we've sure had our fair share of stress lately.




Photobucket