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I don't have the first clue how to do this, so I am just going to put some basic details for now.

Hello my name is Niki. I am a single mom and am on disability. My daughter is a bright beautiful 14 yr old, she has a big heart and a very strong will. Later in life that will serve her well, now it mainly creates havoc in our home. My son is 7 yrs old. He is adorable, very intelligent and a total sweetheart. He has recently been diagnosed with an Autism Spectrum Disorder PDD-NOS.

This has pretty much consumed all of our lives lately. There are aspects that have been ongoing for a long time. It has always been nearly impossible to keep up after him. He's always kind of done things his own way, etc. It wasn't until he started having these meltdowns caused by him just being extremely overwhelmed in the classroom, that it was suggested to me that there might be something "wrong" with him. This is not the term I would use of course, it is however the term I was hearing constantly. I will blog about that whole chaotic experience when I get a free minute (probably at  4 in the morning or so). It seems like for the last year I am doing nothing but scheduling appointments, filling out questionnaires, making phone calls, explaining PDD-NOS to people, going to various appointments (doctors, therapists, assessments, specialists, IEP's), applying for "services", etc. I feel like I need an assistant. I am exhausted.

My daughter just started high school. She is loving it, so that's a plus. I chose to enroll her in a charter school through the county, because where we live, the high schools are less than desirable. In fact every HS in our district (except one that was built after the study began) was labeled a "drop-out factory" in a well-publicized study done by Johns Hopkins University. She's been in this school district since kindergarten and I have been less than impressed. My choice was probably not the most financially sound, by many accounts. If she went to her homeschool, she would get free lunch and a bus pass. At this school, there are no buses, I have to drive her to and from school everyday (It is 17 miles from our house via the freeway) and I have to give her money to buy lunch. We are definitely feeling the gas prices and rising grocery prices! It is worth it to me though. I just hope I can find some way to keep up on everything. This school could make a huge difference in her future. The very first day, she came home and told me something, I never thought I would have to hear "Mom, this school is really cool, I actually feel safe there". Safe? Is this what you should be worried about at 14?? In the city we live in, it is. In addition to an obvious lack of safety, she has been taught very little during her time in the home district, I am actually sickened at the basic things that she does not know. It seems that school has literally become a place we send our kids to learn one thing and learn it well, how to pass state tests. It is sickening. This is not based solely on my daughter's reports, the teachers have told me themselves. (I'm feeling another future blog here) Things have been rough for her. Her dad is a total dead-beat. He paid nothing the first ten years of her life, then once he finally started paying child support  the disaster really began (I'll blog about that too..I promise). She has a very difficult time with her brother and his diagnosis, we are working on that. She is resentful of the extra time, care and attention he requires. She is resentful that I am sick and tired all the time and she is resentful that we don't have the money for her to go do things with her friends, or to take vacations, or buy the clothes/shoes/etc that she wants, unless we find them at the thrift store. She's a smart girl, she understands but she doesn't like it. 

I have been having a number of health problems. My being so sick and tired all of the time makes it very difficult to get much done. I basically practice DBT skills as much as possible, but I will be the first to admit, it doesn't come naturally. In addition to my original disabling condition "medication resistant ultra-rapid cycling bipolar disorder", I've been diagnosed with narcolepsy. For years I was dealing with people thinking I was lazy or out partying all night (I was not). I kept telling them, I am just tired...exhausted...all the time, no matter what I do and I don't know why. The doctor I had at the time was sure it was a side effect of my medications, so he started playing musical meds. All to no avail. Finally, I got a new doctor (I had county at the time, so you are assigned a doctor). He went over my file, asked me a number of questions, etc. finally, he looks at me and says "have you ever been tested for narcolepsy?" He was confident that was why I was so tired. I had a sleep study done at an independent sleep lab and not only did I have narcolepsy, my Multiple Sleep Latency Test showed that I go into REM sleep in approximately 7 minutes (to put this into perspective the average onset of REM sleep is about 90 minutes after you fall asleep). After years of medicine-go-round, I am now on the bare minimum. I take a mood stabilizer, a medication that treats both my narcolepsy and ADD together and a medication to help me sleep. The thing about narcolepsy is the flipside seems to be insomnia, basically your sleep is all out of whack. Oh, and I take Imitrex for migraines. That's all I was going to be taking, until about 2 weeks ago. Enter the new symptoms, I was having these horrible headaches that were diagnosed as migraines. Then new symptoms started. I have what are called "stars and floaters" they are basically a visual disturbance caused by what I was told are occular migraines. A few weeks later, I started having stroke symptoms (sharp pain in my shoulder, shooting down to my hand, numbness in my hand, slurring my speech, unable to walk, etc) The doctor I saw thought that I must be having TIA's "mini-strokes". It was later decided that I am having some sort of complex migraines that are a combination of migraine with aura, occular migraine and basilar migraine. The neurologist said to me "we don't really know a lot about migraines at this point, but this medication has worked for some people that have these symptoms" he then prescribed me propranolol. He explained to me that it might lower my blood pressure. (I guess it "might" since it is primarily prescribed for hypertension). This should be interesting since my blood pressure is low enough that it is mentioned every time someone takes it. (I saw an ENT last week and the first thing he said when he walked in the room, "Hi, wow, your blood pressure is low") I did tell the neuro, he still thinks I should try it, saying I will know pretty quickly if it is going to effect me in that way because I will probably get fatigued or maybe pass out. ~~~~I'll write more here later.~~~~

I found this site one night while I was sitting at the computer, trying to stave off a major depression (at my therapists recommendation). I guess I am having a hard time admitting it, but I've gotten so far behind on my bills. I try to figure out how, but it is just that much more exhausting. I know that I've been slowly whittling away any chance of getting caught up by getting caught in a vicious cash advance cycle. There have been other contributing factors. I've decided that how it happened is not what is important at this point. Getting myself out of this hole, so that I can focus on what is important; my health and my children and their needs is. Ultimately, I need to find us a new place to live (I'll be having to blog  for a year to catch you guys up) and something is going wrong on my car every month now, so I will have to be figuring out a way to replace her :^( However, right now, I don't know how I am going to get through this month. I've officially reached the point that I can't even count on cash advances to fix this mess.

My son has another appointment at Oakland Children's Hospital with the Neurologist next week and we are awaiting a call from the pediatrician regarding an appointment at UCSF for my daughter. She was seen by a pediatric spine specialist two years ago, because she has scoliosis (the school nurse believed it could be due to the weight of her backpack...the kids are carrying backpacks that are way too heavy during their formative years and it is actually warping their spines) At that time, the doctor said it was pronounced but didn't think it would get any worse, since she had already hit puberty. He was wrong, it has gotten worse and now she's being referred back. I drive a black car with a broken AC, during these summer days it is like driving in an oven, I can take it ...it's not easy...but I can. My son however has major sensory integration issues, he whines and complains and/or falls asleep any time we are in the car (I was quoted $200+ to fix that, needless to say with everything else, AC got put way down the list) I've been pulled over twice because I have a crack that spans my entire windshield, I was informed that I will no longer get warnings and that fix it tickets for windshields only give you 2 days to get the repair. Just after I found out it would cost way more than I could afford for a new windshield, I went out to run one of my many errands and guess what? my check engine light came on! I just had to have part of the cooling system repaired a couple of months ago (a big contributing factor to the cash advance cycle). The car squeals when I turn left or right, so I already knew I needed to have that checked out..but when? how? Oh and this month...my registration is due..I have no way to pay it and my insurance renewal is next month. I have to have my car, otherwise I can't get my son to all of his appointments, or my daughter to her school and heaven forbid I don't have a way to get over and pay all of my bills. I know..walk. I have ...many times, but I am still recovering from ankle surgery. I broke my fibula 10/06, then had to have ligament reconstruction surgery 12/07. It is better, but I still haven't regained all of my muscle strength (though both calves are starting to look closer to the same size) Yesterday, I got a 48 hour notice from PG&E (I applied for HEAP over a month ago, but they told me friday that they are just now going through applications for June) I had planned to have a yard sale at a friend's house to try and clear out my storage unit, solving a a couple of issues 1)I get rid of a lot of stuff that we no longer need while making money to pay bills ..the original plan was to have the sale to raise money to move..now that has to take a back seat to more immediate bills 2) I don't have to pay the extra $100 a month that I am paying for storage. Well, I learned that she had to postpone the sale until next month and that just sent everything kind of spiraling down. The yard sale was my last ditch effort to keep things afloat. I'm feeling very overwhelmed. I never get a break. My son is finally going to start school again in October (yet another blog), he'll be attending 2 hours a day. For right now, it is me, doing everything, all of the time.

The most frustrating part is it seems there is nothing I can do to "boost" my income when needed. I mean I can't even buy a $1 lottery ticket in hopes of winning a couple thousand dollars to get everything caught up...because if I did, it would be counted as income for the coming months. The government agencies don't say "oh, you have debt? ok, we'll let you use that money to cover your debt and then you can start fresh next month". lol. Wouldn't that be nice?? Even if I had someone to ask for help, I couldn't because if someone pays any of your bills or loans you money or whatever, you are required to report it. It just feels like a lose lose situation. Back before I went on disability, when I was working full time, going to school, raising my daughter...when things were getting to be too much, I couldn't afford to go to the doctor, my insurance cost too much, I knew I was sick, but just kept trying to do it alone. I had to quit school and then I was missing so much work that I couldn't keep up on my rent..let alone other bills. Finally,  I tried getting help. I called every agency I could think of and then some. They all basically told me the same thing, if I were on drugs, homeless, unemployed etc. there would be services available to me. Since I was none of those, there was nothing they could do. I remember saying to this woman, "so basically there are no programs to help keep someone from losing everything?" She said, "no, but once you are in that position, call us back" Wow! How's that for encouraging.

It is true though. I WAS there within a few months of that very conversation. It took a while and things got pretty bad. But, once I was approved for Social Security, I became eligible for Medicare, a Section 8 housing voucher, free school lunch for my kids, Lifeline, etc. I am well aware of the services out there. I am not however aware that there is anything that helps when you get in over your head and you are already receiving services. I guess more than anything it helps to have people believing in you and more importantly helping you remember to believe in yourself.

Some days I am able to keep perspective, I can see what needs to be done and what I need to do. Other days, like today, it all seems so impossible..it is as if no matter what I do..it will be no more than a temporary fix. I'm trying to stay positive about it all, so I guess I will just have to see how tomorrow looks *smile*.