OK, breathe. This, too, shall pass. I have to keep remembering that. I need some advice here, from people who have more level heads than I do right now.

I may be fast-forwarding in my storyline here, but I need to cover some current events. Forgive me...I will fill in the blanks eventually.

Here in Florida, we have something called Medwaiver. Every state has it, but some states call it different things. The idea behind Medwaiver is to cover 5 costly disabilities, to ease the financial burden on the families, and to provide much-needed services in different areas of development. The 5 disabilities are: Prader-Willi, Mental Retardation (their word, not mine), Spina Bifida, Cerebral Palsy, and AUTISM.

Currently, there is a waiting list here in Florida. My belief is that the parents retire to Florida, their children has a child with a disability, and they decide to move to Florida to have extra help. Makes sense, as we were told to move by our pediatrician to be closer to more of our family that could be helful to us. That's neither here nor there though. Anyway, this monsterous waiting list is between 4-6 years long right now! The rules are pretty simple- you have to have a child with one of those very specific diagnosis, and you cannot apply until said child turns 3 years old. The services are vast, however, and can range anywhere from having a private nurse to speech therapy. Respite care and behavioral services are also included in this.

We have been on the waiting list since June of '04, and probably have about 2 more years to go. Since we have applied, actually, before we ever applied, I have felt as though we had special circumstances because we have 2 children on the spectrum. Oh no, first come, first serve. OK. Well, then I found out about the "crisis" waiver, in which they move someone up to the front of the line and give them services, as long as they were in a "crisis" situation. So, about a year ago, I applied for this, when I truly felt as though e were in crisis. At the time, my son was sripping off all his clothes constantly, and climbing on EVERYTHING (I would find him 6 ft up in the air sometimes, and couldn't get him down). He almost pulled the TV off the entertainment center onto his sister for crying out loud. So, like I said, we applied. But, we were denied. At the time, I couldn't imagine how we were denied. What could be more of a crisis situation than my son almost killing his sister???

I had to ask, didn't I?

Over the last several months things have gone from manageably bad to unmanageable and much, much worse. My son had gotten over the whole stripping thing, only to go back to it after a short period of time. He started dumping milk and orange juice onto our floors. He began to hit himself out of frustration, and that led to him banging his head on anything and everything. It's really not funny, but me having to make a joke every five seconds, I feel as though I must enter one here.

You know the movie "Liar, Liar"? Remember the scence where he couldn't lie in court, so he ran into the bathroom and proceeded to hurt himself in every way possible? Sometimes that scene flashes in my mind because I start to ask Loni what he's doing and why he's doing it. Then I start wondering what I would say if he replied "I'm kicking my ass, do you mind?!"

Anyway, so he ruined our carpeting to the point where our home was unliveable it stunk so bad, he walks around with bruises on his forehead almost daily from banging his head (no, helmets are not an option, as he will not tolerate anything on his head), he hits and kicks us, he goes around naked and peeing on everything all the time, and oh yeah...he PUT HIS HEAD THROUGH A WINDOW! Crisis? Uh........yeah.

So I applied again. This time we had a behavioral specialist come out and observe him. She saw him in all his glory...hitting his head, spilling things, stripping. It was great. Last time when the person came out, he suddenly turned into this angel, and was hugging me and kissing me. For 1/2 hour I tried to explain to the lady that he wasn't my kid...someone had switched him out or something when I wasn't looking.

Anyway, the behaviorist recommended that Loni be put through for the crisis waiver, and that she herself work one-on-one with him for at least 4 hours a week. She also felt that it would benefit him to have someone work with him in the home environment for at least 2 hours every night. I was...I can't even tell you what I was. That would single-handedly solve every single problem I have. First, we would be working on correcting bad behaviors. Second, I would have someone with him at all times in the afternoon so I might be able to spend a few minutes with my other kids. Third, the behaviorist would teach my husband and I how to handle situations better. It was absolutely perfect. Everyone knew how badly we needed this help, and everyone, even the lady at the local office, was just sure I was going to get it. It passed through the local and district offices. Hooray!

Word came in from Tallahassee today, and we didn't get it.

He put his head through a freakin' window, and we didn't get it?! For a moment I was just silent. I hadn't prepared for this at all. Then, the person at the local office (who was extremely apologetic) explained to me that she had put 9 crisis applications through, and we were the only one to get denied. By then I was frustrated. What she told me next flat out pissed me off.

The reason why we didn't get it? Because we hadn't tried drugs on him yet.

WTF?!

So, in other words, this organization would rather not spend a dime in order to have kids walk around like zombies with their behaviors masked, as opposed to helping the families work together to solve the problems (side effect-free, might I add).

Now, let me say that I am not AGAINST medicine, if it is nessesary, but to use a psycotrophic drug on a 5 year old? I personally would only do that as an absolute last resort.

So here's my rock and hard place that I happen to be getting crushed in between. I was told that they denied me solely on the basis that I had not medicated my child. In other words, they are forcing me to DRUG my child before they will help me??? OK, I can't continue on the way things are going, nor can my other kids, and especially Loni. The way he hits himself...I'm so worried he's going to do serious damage to his brain. So I call the behavioral pediatrician, because that's who handles there sort of things. There are only 2 in the area (by area, I mean within a 2 hour drive). I have been to both, and am not super-fond of either one's office staff. I chose the lesser of 2 evils and called today. Because we have a primary health insurance, they cannot see him unless we pay out of pocket, which would be $515. Yes, that's for one visit. Plus the cost of the meds, and all the follow-up visits to monitor him. Yeah, there's no way that was going to happen. So tomorrow I get to call the greater of the 2 evils and set up an appt there.

Question is, how does our government have the right to say, "We have this thing, and it will help your kids, but you must first use drugs on them"? What if I absolutely refused to try drugs? What if it was against my religious beliefs? There is no appeals process. What these people say is final. Sure, I could apply again, but I would be turned down for the same reason. So far, everyone I have told is completely shocked by their decision, let alone the reasoning behind it. Even Loni's teacher, one of the most highly respected teachers in the state, said that medicine would only mask the problems, and he desperately needs the one-on-one assistance.

So, here's my plan. I'm going to write the governor. I am going to cc everyone and their uncle on this email. State reps, autism organizations, the white house. I want to know if my son is being treated unfairly, and I want to know how they can justify forcing a family in need into using drugs to get their kid to "behave". I truly am the type that tries to take a holistic approach to my kids health, but, as I already said, if medicine is absolutely nessesary, I will use it. So, if the governor says there's nothing he can do, I guess I will have to play their game. I think it's sick and twisted, but I have to do what will help everyone in the long run.

Any other ideas? Am I nuts to email the governor? Should I make more of a big deal out of this? Do you think our rights are being violated? Thoughts, comments, and suggestions would all be welcomed and extremely helpful!!!

Thanks,
Leslie

Ever have one of those days where everything around you needs to be done, but you just can't seem to get off your but and do it? I have laundry piled up to the ceilings, a TON of painting that needs to be worked on (note that I didn't say finished- it's a project with no end in sight!), my bedroom is a mess, and I have the "hole" that needs to be worked on.

I don't want to work, I want to bang on the keys (of my computer) all day!

But, alas, I can't do that. I need to get going and be productive. That usually means going inside and playing with my puppies, and eating lunch. I just don't come alive until the afternoon for some reason. I wish I could be a morning person. Instead, I am forced to get up at 6:45, and then have no energy most of the day. Grrrr.

My son's birthday is coming up on the 17th...at least I got one thing done today. I ordered him a cell phone. He's "SO embarrassed" that he's like, the only kid in school without one! Yeah, right. The only one, huh? Whatever. Anyway, it'll come in handy when I need to keep tabs on him. He just doesn't realize that part of it yet. Hehe!

Hope to write more later, after hubby comes home. Tonight is one of his late nights (yuck!), so he doesn't get home until around 7:45. I hate his late nights. Lucky us, he gets 2 this week! Hooray!

Take care everyone,
Leslie

In my last "serious" post, I explained how I told my husband about Loni's autism, and about calling SSI. I was mentioning toward the end that God works in mysterious ways, so now I would like to explain what I meant by that.

Loni was a planned pregnancy, for several months in fact. Seems like if my hubby sneezes near me normally, and I wind up pregnant (I've had a couple of miscarriages). But for some reason it took about 4 months to get pregnant. With my first pregnancy, I was very young (16), and I gained the perfect amount of weight (25 1/4 pounds). I could have stood to lose a few pounds before I got pregnant, but I wasn't "overweight". Within 4 months of having my oldest, I actually dropped about twice what I had gained, and was now a very happy size 3. I managed to stay that size for a few years, actually about 7 years to be exact. Anyway, when I got pregnant with Loni, I didn't worry about my weight, because I "knew" I'd lose it right away. Not so. I had two best friends during my pregnancy...heir names were Ben and Jerry. And I communicated with them just about every night...especially their 2 twisted flavor! Needless to say, I gained a little more this time around. Actually, a lot more. 75 pounds! I was pretty hefty by the time I delivered.

(To be completely honest, I was hoping he was going to be a girl, because I really, really wanted a girl. Plus, I had told my husband that we were going to keep trying until we had one...I didn't care how many kids we had!)

Then, after he was born, I ended up on steroid shots because I had developed a weird post-pregnancy skin condition, so that shot any hope of me losing the weight quickly. Then, before I knew it, I was pregnant again. Holy crap! I was miserable because of my skin, I was fat, and I was exhausted because I had a baby that wouldn't sleep through the night. I was the absolute most miserable person in the world. I was soooooo pissed off that I was pregnant again. But, I knew I had to get over it, and try to be healthy. I wasn't on the steroid shots anymore when I got pregnant (thankfully), and I tried to be a little more sensible about what I ate. I didn't communicate nearly as much with Ben and Jerry this time around. Still I managed to gain another 45 pounds (after having lost 0 after Loni was born).

Every single day I prayed to God that this child would be a girl. I begged and I pleaded, because I was serious about having kids until we had a girl, and I just wanted it to be done with. I thought I might explode from being so heavy if I got pregnant again. Sounds ridiculous, I know, but I wasn't the most sane person at that time.

Anyway, things with Loni were not getting any better. He seemed to be developing normally on most levels, but he also had some abnormally strong areas, and some abnormally weak ones. About a month and a half before I delivered, we knew something was wrong with Loni, but we couldn't put our finger on it. He had stopped communicating, and there were other signs, but back then we didn't know how to put 2 and 2 together.

Finally, it was D-day. My labors go pretty fast, and we lived an hour and a half from the hospital, so we decided to be induced. I had an epidural, just like I did with Loni...only this one didn't exactly go the same way. When receiving an epidural, it is vital that you stay completely still, in a slightly hunched over position, so that a needle can be inserted between your vertabrae (I'm sure I spelled that wrong). Well, as I'm sure you can imagine, when I felt something squirt out all over my backside, and heard the anesthesiologist say "whoops!", I really wanted to turn around. But, I knew I couldn't, so I just sort of mumbled "What happened?". He mentioned something about a "little bit of spinal fluid coming out...that's all", and assured me that everything was OK. My daughter was born, and everything seemed fine. For about 45 minutes. Then I started getting this migraine from hell. It only got worse from there. They tell you when you decide to get an epidural that there are risks involved, such as an epidural headache, but that's only about 1% of the people. I've had migraines for years...I knew I could handle it if that should happen. Let me just say that I have given birth, had severe kidney stones that required surgery, and this epidural headache was by far the single most excruciating thing I had ever been through. I went an entire week with this headache. I traveled home an hour in the car, and had to lay down on my back the entire way. I was so miserable, in fact, that I couldn't even hold my daughter. This precious baby girl that I had wanted so badly, and I couldn't be her mommy. I couldn't breastfeed her, or rock her, or even sing to her because my head hurt so bad. Basically, my brain was hitting my skull because of the lack of spinal fluid...uh, OUCH!!!! Anyway, after a week, they tried to do a blood patch, which from my understanding, is the only thing that can fix that. It works on 98% of people. Gee...guess who was the 2% of the 1%?! Yep, me. Finally, about 2 days later, it cleared up...just like that!

Anyway, I felt like I needed to explain all my frustrations before I could go on with the story.

So my kids were born 14 1/2 months apart. It was challenging, to say the least. I was impossible to go to the store with all of them, or really do anything. Loni STILL was not sleeping through the night, and he had developed some really disturbing habits, like spinning in circles for eternity, and not communicating. He would cry a lot, which would upset the baby. I can remember days where I would look up towards heaven and ask God why he would give me 2 kids so close together. There were moments where I wondered if Loni would have been different if I hadn't had my daughter. Then came the diagnosis.

For months I was angry. I was mad that all of "this" had been put upon my shoulders. I was furious that I had gotten pregnant with my daughter so quickly after my son. I mentioned this to a few people that I was close with, like my mother, my husband, and a fiend or two.

After I started the support group, I had become close with one of the members. We were talking on the phone, and I was having yet another rough day. I mentioned that although I felt horrible about saying this, that I wondered what our lives would have been like if we would have waited to have my daughter. My friend had an interesting take on this, and she really hit the nail on the head. She asked me, if I knew then what I know now (about Loni's autism, along with the possibility of it being genetic), would I have actually chosen to have another baby?I thought about it, and said probably not. She brought up the fact that I had always wanted a girl, and that had I not gotten pregnant when I did, I probably never would have had her, because I would have been too afraid, and I would have already had my hands full.

WOW! She was sooo right! There is a song by Garth Brooks called "Unanswered Prayers", and in a weird way, my baby girl was my unanswered prayer. Who was I to decide what's best for me? Who was I to say what the timing SHOULD have been? This made me realize that God truly works in mysterious ways, and that I need to be a lot more trusting, and let him lead me.

I have everything I ever wanted, just with some "extras" here and there...like autism, asthma, and bipolar disorder. Lord knows none of us are perfect, so I just have to trust in him, and ask for his help every day. I am so thankful that he didn't listen to me, because if he had, I wouldn't have my precious little angel!

Thanks for reading,
Leslie

We had a relatively quiet weekend. That was nice. No requests to babysit from my brother, and no one coming to visit. That hasn't happened in a while. Well, actually, my sodest son's friend came over and spent the night, but that was no big deal. He didn't come over until around 5 PM Saturday, and he left at 8:30 this morning. My husband and I did have a little tift though, about what needed to be done around the house. He felt that we needed to clean out the garage (AKA his workout spot), and I thought the inside was far more important. His birthday present to me last weekend was a $1000 shopping spree at Home Depot. But, it was like getting a present you can't use. I tried to paint during the week, but I'm afraid of heights, and we have 14 ft. ceilings. Hey, from about 7 ft. down to the ground, it looks great..but the top half still needs painting. I don't feel comfortable getting on a ladder without someone else there, and when hubby is home, so are the kids. Which means painting would be very difficult. There are about a million other things that need done inside though. I took a sledgehammer to a wall on Thursday (with a friends help), and I am converting my coat closet into a laundry room closet. I am really excited about that. Funny how when you're young, going out and hanging around with your friends, or getting a video game is awesome. At some point awesome changed into redoing a closet, or getting a new oven. Weird.

Anyway, I tried to resolve things diplomatically, by suggesting that we work on the inside Saturday, and hubby could go out Sunday and do his thing in the garage. We tried, and it sort of worked. The house looks better than it did Friday night, and so does the garage, but we can never get enough done.

The puppies are growing so fast, in so many ways! They are starting to play around with each other, and they are developing such personalities!! It's adorable to watch them grow. I don't know how I'm going to handle it when they leave to go home with their new owners. Although, by then they will be chewing on everything, and making messes, so I might just be relieved. I'm just glad that I know all of the owners so far, so I'll be able to keep up with them over the years. I don't know how O.B's do it.

Anyway, nothing much else to report. I'm sure I'll write more tomorrow when I'll actually have something to say. BTW, any Grey's Anatomy fans out there? LOVED the ending this week!!!! Such a great show. I'm planning on watching "Brothers and Sisters" from now on, because one of the sisters has a child with autism. I'm curious to see how they portray it. I'm sure there will be goo involved.

Take Care everyone, and talk to you again soon!

~Leslie

They (at least Johnson & Johnson Co.) say that "having a baby changes everything". Sure, it does. But, having a baby who ends up being diagnosed with autism changes everything again, and for everyone who knows the family. Some people shy away because they don't know what to say. Others offer advice or opinions that are unsolicited. There are even those that will try and "help" by denying that they believe the child's diagnosis. Then there's the family members. There are the grandparents who have never been around a disabled child before and are not sure how to act. There are the ones who just don't "get it", and probably never will. There are the ones who visit just often enough so as to not have completely abandoned the family, and then there are the ones who wind up shouldering some of the burden. There are the aunts and uncles, who shake their head and say "that sucks", never to talk about it again. There are the ones who secretly don't want their kids around the "autistic one" because they fear their child might somehow "catch" it. There are the ones who are too involved with their own lives to listen or even care. And there are some who think the parents need to give their child a swift kick in the pants and that will cure them. There are the parents themselves who have to go through their stages of grief, while caring not only for that child, but also for their other kids. Many parents describe their child's autism like a theif in the night, who stole their child away from them, and they will stop at nothing to "find" their child again. There are the ones who deny it, and refuse to label their child. There are the "perfect" parents, who act as if nothing is wrong, and never tell anyone because they are too proud to admit that their family has a "fault". Then there's the parents who slowly come to realize that their child is not getting any better, and they will probably have to care for that child the rest of their lives. There's won't ever be a 2nd honeymoon, a weekend in Vegas, or a trip to Paris...at least not without their child with them (and probably a nanny as well- if they're lucky enough to find one). The parents are over-worked, over-tired, over-stressed, financially screwed, over-scheduled, and knee-deep in household chores. They have to find the time to read about autism and learn as much as they can. They have to find time to try different things with their child to see if they ease some of the symptoms. They have to cook, clean, work, give baths, mow the lawn, do the laundry, the dishes, help with homework, take their child to therapy and doctor's appointments. They are exhausted. But, they aren't allowed to be. They have to stay focused. Because many of them have more than one child. What about soccer or football practice? What about the band recital? Who's going to pick up little Suzy Q from dance? What if one of their other children isn't doing so good in school- one of the parents has to find time to help that child with their homeowrk. God forbid more than one child has autism, and God forbid there be another health issue with another sibling, like Asthma, or Bipolar disorder. That just throws in more appointments and therapy sessions. What about the parents who can't find a sitter? And even if they can, they can't afford the $15-$18 per hour rate that the qualified sitters charge. Plain and simple, the other kids do not get the individual attention they deserve. Which can often lead to them acting out as they grow older. So, that just adds one more thing to the parents already overflowing plate. You know those circus acts where the guy has like 20 plates spinning around on all these different rods, and he never drops one. I could do that. I could do 50 or more. But there's no way he could ever handle what I go through...not in a million years. I'm not patting myself on the back, nor am I looking for a pat. My life is what it is. It's everything I've described in this post. Those friends are mine, those relatives are mine. I am one of those parents, and those are my kids. I love each one of them more than I could ever explain, but I know that autism has made me be less of an effective parent to my other two than I would have been without it. I want to help my oldest with his homework, and play soccer with him, and watch his practices, and not have to have one of his friend's parents pick him up from chess club. I want to jump all over him when he is out of line at school. I need to be able to take him to therapy appointments because of his bipolar disorder and I need to pay closer attention to him because of his asthma. But I can't. I am only one person. What can I do when Loni is constantly getting into the cabinets, and breaking things (including windows), and dumping gallons of milk onto the floor, or boxes of cereal? How can I even hold a conversation with my oldest when I am saying "No!" and "get down!" every 5 seconds? I feel so bad for my oldest son, and I can't tell him that. He's at the age where he would take that, and twist it around and use it against me. He's very smart, and can manipulate just about anyone, but I know him too well to let him do that to me. So instead he just thinks I'm the meanest person on the planet and that I don't care about him. What makes it the absolute worst, is that there is no escape for him. As you know, he has a different father (biologically), and my husband adopted him. The reason behind this was that his dad didn't want to pay the child support. I couldn't have ever cared less about the money. The only thing I EVER wanted was for him to treat him well. But, he never did. So when he asked about giving him up, I was all over it. His one request was that I still allow his family and him to see him. He was 8 years old, I said. Why would I hurt him by taking away his family? So, he still sees his grandparents, and goes and stays over night about once a month. Problem is, they have custody of their other son's child because their son is mentally handicapped, as is his wife. And the grandson is also mentally handicapped. So my son never gets away from it, even when he goes elsewhere to visit. Unfortunately, his grandparents are EXTREMELY protective of their grandchild, and no one can ever say he does anything wrong. So my son gets yelled at if he doesn't include his cousin in everything he does while he's there. My son's father's wife has even complained to me about how her children get into trouble there too. I just feel awful for him. Every little thing in his life has been affected by his brother and his cousin. Granted, he will probably grow up to be extremely compassionate, and maybe even work to some degree in a field related to disabilities, but for now, his whole childhood has been screwed up. He can't really have friends over because his brother is always running around naked and tearing the whole house apart, and even in public, he gets embarrassed sometimes by his brother and sister. There have been times I have had to make him leave things early, or times he hasn't been able to go certain places at all. I wish so much that I could give him a good childhood, but I can't. It's practically over now anyway. He'll be 13 in a couple of weeks. He's becoming a man so quickly, and I miss him so much.

I just can't type anymore right now. Gosh this was depressing. Sorry about that. Hope you all have a good day, and if you think of it, say a little prayer for my family.

Thanks,
Leslie