Friday, December 20, 2013

What it is...and isn't

So I am sitting here with my beautiful children, and know that they are the best thing in my life. I am watching my brilliant seven year old complete logic puzzles (which is amazing) while her younger brother and sister nap. To know what she goes through breaks my heart, but I know that she is amazing.Life is hard on all of us right now, but so much more difficult for her. 

Yule time is coming, and it is going to be amazing. We are so broke. I did not think we were going to have anything. i managed to make magic work, with the help of an amazing man. They will have so many gifts to open they are not going to know what to do with themselves. Because I am sneaky and clever, we will also have an amazing roast for dinner with lots of yummy desserts. 

They miss Virginia. I never thought they would as much as the older one begged to come back to Colorado, but they are so unhappy here. Their dad is not very involved, even when he is around. He has a tendency to be a bit of a jerk, especially to the oldest. She deserves so much better, and I have to find a way to make that happen.

With very little money for food, and someone being so irresponsible that we can barely cover the rent and bills (leaving me penniless throughout the month although he certainly goes without nothing), things certainly have to change. This is even more true now that I know what my oldest girl is suffering with. Now she requires a special diet...and medicine. Not all of it is inexpensive.

I cannot praise Children's Hospital enough. These people took me seriously, and know children well enough to not dismiss my concerns as so many other doctors have. They knew what it was before they even ran any tests. They gave me a name for her problem, and gave me the tools to fix it. And Nurse Pixie (yes, that absolutely IS her name, but I may be spelling it wrong), I cannot thank you enough. You were kind to my daughter, but firm. That is what she needs. You were so understanding.

Life is never without its challenges, and if we give up we will never know why. It would be so much easier without the other things, but the fight is worth fighting I think. My older daughter is fighting a good fight now. Trying to retrain herself, even though we have yet to be able to get the medicine and special food she needs. She is asking for things like green beans for snacks. She is making herself do what she has for so long fought against...all by herself. The pride I feel for her is only reflected in her beaming face every time. I am so so proud of matter what happens and how hard it may get.

Monday, December 16, 2013

The devastating habit and the amazing astronaut

So girl 1 is steadily making herself more and more ill. Today she is running a fever, but still refuses to use the bathroom. I am calling a clinic to make an appointment for her. Someone HAS to take this seriously. She does not eat anything of substance. When she does, it is not enough to help her. She is not eating enough to sustain herself and gets exhausted quickly. I can count her ribs ffs. This is killing me. If the clinics will not take me seriously, I will be taking her to the emergency room,because she is fucking dying.

Girl two has an amazing imagination and is reaching for the stars, quite literally. She took a box, and decorated it. She told me "This is my rocket ship. Do you like it? It is going to take me to the moon someday..." This is the first time she has shown any desire to be in any career as an adult. Interesting that it would be something so difficult to achieve. I hope that if this is a goal for her, that she never gives up...

Sunday, December 8, 2013

Birthday Pancakes

My beautiful big girl turned 7 today. She asked for pancakes for breakfast. She is not even upset that I cannot afford a gift for her. She is so amazing. ..

Saturday, December 7, 2013

Awesomely horrible...

I have some truly awesome kiddos. The smallest one loves punk music. He will dance to it and smile. He even tries to sing along. If he has to go too many days without hearing hours of it, he gets unbearably cranky. Girl 2 is sweet and funny. She know a lot of bigger than her words, and how to use them correctly. She is lovey and cuddly. Her temper is amazing too, but even while she is screaming and stomping her feet (which she does while screaming stomp, stomp, stomp), she will tell you what she is angry about and can be easily brought back into a calmer state.

Girl 1 is pretty amazing too. She is smart, but is always telling herself she can't. I hate that. I think that is the worst four letter word out there...can't. With a little patience and guidance, she sees that she can, ad her face lights up so bright. She is a math wiz, but gets really bored very quickly. She is getting so much better at reading, but she would rather be doing anything else but schooling. She is also amazingly frustrating...

Getting her to do her schoolwork is amazingly difficult and frustrating. It is always a huge fight and she has gotten way behind. When she gets upset or overwhelmed, there are violent meltdowns and extreme tantrums. The worst thing though...well the hardest thing for me to handle is her bathroom problem. I wish there was a way to fix it. She won't go #2. She will hold it until she makes messes in her clothes, but it doesn't even end there. She will hide and use whatever she can get her hands on to clean herself up. This is not limited to her clothes, it extends to her sister's, her brother's, and even mine. 

I am hoping to have medicaid for her soon so I can take her to a doctor. I am just afraid it is going to be fight after fight to get any of them to listen to me. She makes herself sick with it. The last doctor she had said it wasn't a problem...but it is. It is a huge problem. She hardly eats, she is always tired, she never feels well. She gets low grade fevers because her body is fighting to get rid of the waste. Why does this have to be so hard? :(

Tuesday, November 26, 2013

Listening to sign language

The title of this post makes about as much sense saying "I am going to go watch some music on the radio". I assure you, there is a reason for that. Imagine that you are having a conversation. It is a conversation that you are greatly enjoying. It is beautiful and happy. Suddenly, the person you are talking with stops speaking vocally, and begins using sign language (or rather, a language that you do not speak or understand). Not only that, but they alternate between this language and the one you do speak and understand, causing you to become more and more confused, frustrated, and overwhelmed.

Now imagine you are on the other side of this conversation. You know that you have changed absolutely nothing, but the other person suddenly does not understand what you are saying. Not only do they not understand what you are saying, but you can barely understand them. This is the best way I can describe what has happened to my older daughter and me. I am sure that many people that read this will be confused at first, but don't worry. I am going to elaborate.

My daughter developed perfectly "normal" as an infant up to the age of about seven months. It was at that point that a child development specialist told me that she was incredibly advanced. I never thought much of it, but now it seems as though it were an ominous forbearance. by one year old, she was speaking in sentences three to four words long and had an incredible vocabulary. At age two, she exhibited a powerful memory and began to develop an appreciation for the arts. Classical music and ballet are an obsession for her. 

At age three she self potty trained. This is when I started to notice something was not right. Something had changed. She had a terribly difficult time making friends with other children. Play was confusing for her and led to emotional meltdowns. Her hearing seemed to become more sensitive, and higher pitches and louder volumes were unbearable. Certain materials were too scratchy and she would cut up those clothes so she would not have to wear them. She became afraid of the dark. If the temperature was not just right, she would become highly unpleasant. The look or smell of foods she previously had loved made her sick.

It has only gotten worse. She has a near eidetic memory, so she memorizes phrases from movies and uses them in situations where she is uncomfortable and cannot really find another way to express herself. She has violent meltdowns where she is her greatest victim. She has regressed emotionally to a point where her younger sister is more mature. She cannot develop relationships with children her age at all. She is a wiz in math but gives up quickly in Language arts. She will get up and climb out a window or walk out the door at four in the morning. She has no concept of people being willing to injure her. She simply cannot understand cause to effect. When she does things that she has been told are not okay and gets into trouble, she cannot understand why. 

This, my friends, is only a small glimpse into what is going on. Every day is a huge struggle. Her meltdowns are more and more frequent. She requires near constant calming are reassurance. It is exhausting, because it is having a huge impact on her sleep. I am facing criminal charges because she got up at 5 one morning and just walked out the door. (That was a nightmare of its own and I now have extreme anxiety every time I see a police car). People look at her like she is a bad child, and make snide comments at me when I correct her. My little princess...this is so difficult...

Saturday, November 23, 2013


Everyone, at some point, seems to think they know what is best for other people's children. It is not until you have a child or two of your own that you begin to realize just how wrong you were. I find it merely annoying when other parents try to give me unsolicited advice. I get varying degrees of hostile when some cunt with no kids tries to tell me how to raise mine. The reason? Not even the so called experts can claim perfect knowledge over all needs for every child on the planet. Every child is different, and has unique behaviors, thoughts, feelings, and needs. 

Now I am one of those people that will give unsolicited information (like telling those new parents not to place their newborn baby, in the car seat, where you are supposed to seat a toddler as the infant can be injured or killed), and I will step in and say something about abuse, but the methods another parent uses are not my business. I am not raising their child, not constantly with that child, and therefore am ignorant to said child's unique needs and behaviors.

Example: At grocery store with kids and their dad. Older daughter insisted on buggy with dual seats in front so she didn't have to walk and her sister could sit with her. Partway through with shopping, girl one unbuckles girl 2 and encourages her to climb down off the seating while the buggy is being pushed by their dad. I gather dad's attention and remove girl 2 from harm's way, annoyed and a bit shaken at what could have happened as a result. Girl 1 had the nerve to, possibly assuming that I had not heard and seen said interaction, swear that she had done nothing. I did raise my voice a little when I told her she was lying, and that we both knew exactly what she did, and that what she did put her sister in danger. I also told her such behavior would not be tolerated or rewarded and she would receive no special treats for the day.

I was more than slightly furious when some woman had the nerve to insult my parenting as I walked past her, and not so gently gave her a piece of my mind. If you are not the person dealing with a situation from beginning to end and no one is being harmed, mind your business, seriously. Last week at a little food place I enjoy she acted out quite a bit. We had to be there so I could access the Internet, and do the few things remaining to get her enrolled in school. 

After ordering the food she wanted, she ran off to a table. I have no problem with that. She took off her shoes. I do have a problem with that. She hurt her foot in the restroom.  Poor thing. She screams about it for nearly 20 minutes. I am no longer sympathetic. She eats half of her food, then demands mine. She starts running around. Meanwhile, I am trying to prevent her three year old sister from following her example, eat, nurse her four month old brother, input her placement test scores, and not completely lose my mind. I take away the toy she had brought along. She sits again but demands to play on my laptop,  which I am using to get her into school. She then starts trying to climb over the back of the booth.

Nope. I am so done. I have had enough. I explain that she is a human child, not an animal. I also tell her that she has done little to act like my good little girl once we arrived and we will not be returning. I further explain that her behavior has been embarrassing and that I am disappointed. This is when some jerk makes a snide comment at me for scolding my child while she is misbehaving, while I am trying to do many other things. When confronted,  the moron refused to repeat his snide comment, and I left it be. I had all three little ones with me, was by myself otherwise, and there were two other small children present. I will never be the cause of a stranger's childhood trauma...

So while I am not perfect, I do my best. While I am doing my best, I will defend myself,  within reason. My children are not simply little adults. They are little beings that have yet to learn about the world and it is my job to teach them the fundamental basics of life. If there are to be no consequences as a child, how do they know there will be such as adults? Am I supposed to let them run amok, and risk their safety and the safety of others with no consequence? If I did, those same people would call me a lazy parent and say how awful my kids were. I have amazing, smart, beautiful kids. They are my children to bring up, and unless I ask for help, I expect nosy people to mind their own business and keep their unhelpful comments and attitudes to themselves.

It is never easy

I think it is easy for us as parents to compare the world today to the world that we grew up in. We always say, "when I was a kid, I could do (x, x) and it was never a problem, but these days...". Let me tell you why this is a problem. When we were growing up, media was not as instant as it is today. Violent crime rates were higher, we just did not hear about it as much. Children were abducted just as often, we just kept it within our communities. We did not have Amber Alerts. It was rare that the disappearance of a child garnered national attention. We did not have social media, so our communities were basically the only place this information went. We would gather search parties by knocking on our neighbor's doors. Now, we post pictures on Facebook and the child is sought all over the world. Everyone knows about every injury, assault, crime, missing child, domestic violence situation, and drug addiction. his makes it appear as though these things are suddenly more common, when they are actually more rare.

This goes beyond crime and missing children. Now it seems everyone either knows someone who has a mental illness or has a child with an Autism Spectrum Disorder, or they know someone who knows someone. This is due in part to social media, yes, but there are also other factors in play. The scientific advancements in the field of medicine have created a new era, where things that were once considered mental illness are not and things that were considered untreatable psychosis are indeed manageable. Many addictive behaviors used to be considered a mental illness by themselves. Now we know that they are often a symptom of a true mental illness that can often be successfully treated. While there has always been a sad and deadly stigma attached to mental illness, there are dozens of awareness campaigns to remove that. Most people with mental illness are not a danger to anyone else, though there are exceptions. Also, like any other disease, when untreated mental illness progress to devastating  levels making it impossible to predict behaviors of those afflicted.

The same is also true for Autism Spectrum Disorders. There is a new, highly uneducated theory that perhaps ASDs are the result of the MMR vaccine. The belief is that often the symptoms of an ASD become very obvious at around the age that the MMR vaccines are given, it must be the vaccine. Due to the scientific advances in the area of child development, the diagnostic criteria for ASD have become far more broad, and more children are getting the proper diagnosis. Because this changed around the time that the MMR vaccine became widely available in its current form, it receives the blame. Both of these beliefs are false, and are putting children around the world at great risk.

While the diagnostic criteria have changed allowing for help for all of those with ASDs, it is still very difficult to receive a diagnosis if you have a child that is at all high functioning. Such things make it very difficult to understand your child, and why they were just fine 3 years ago, but now life is an endless torment because you do not understand why the doctor says nothing is wrong when you know that something is just different. In fact, things are so drastically different that your daily life is in upheaval. Your whole world has been turned on its side, and because the doctors will not listen, it is your fault, and yours alone, when something goes wrong. What is worse is that without that diagnosis and someone to help you to help others understand, even the other parent cannot understand that some behaviors are beyond your child's control. 

It would be so much easier if we could blame such things on the MMR vaccine. I have heard tell of a study that links incredible acts of violence as an adult to lead exposure as a child. It makes you think that you can prevent such things happening, if you simply avoid the exposure. While we can keep our kids away from toxic lead paint, we cannot simply not vaccinate to prevent ASDs. Doing so increases the risk for a disease that will cause severe disabilities and may even cause death. There is also evidence that suggests ASDs are genetic. If there is one child with an ASD in the family, the risks of a second child having one are greatly increased. An Autism Spectrum Disorder is something that happens in the brain. It is not an illness in the way that it can be prevented, it cannot. It is not a defect that can be fixed. It is not a defect at all. It means that their brain functions are different. These are people that have incredible minds, they just do not work the same way as yours. They are not mentally deficient. Many of them have amazing intelligence. I think that is the very reason that everything else is so difficult. 

I posted this rant for a reason. My next post will be self explanatory.

Monday, October 21, 2013

When it rains...

So both of my girls have croup. My scoliosis is causing me back pain and my cycle is making me feel like I am being stabbed in my ovaries. I am on the edge of another migraine. Every time I move, my eyes tear up from the pain. On top of it all, I am expecting an angry call from my older daughter's school about her lack of attendance. Ever tried to get an asd child to do something they do not want to do? Try it when they are sick. Her behavior is showing even greater signs of asd as of late. I will be glad when I can get her seen so I have the diagnosis and the tools to help her. Add to all of this that my depression is certainly getting the better of me anymore, and life is suddenly just so much fun....

Monday, October 7, 2013

I ain't no nice guy after all...

I am a stay at home mom. This means that I spend nearly every minute of every day with at least one child demanding my attention for one reason or another. It could be the baby needing a diaper change or a bottle. It might be my four year old demanding something silly. It might be both of my older ones asking for something to eat even though they had breakfast an hour ago. It may just be one or all of them wanting some attention. I get little to no time alone if any of them are awake. This includes bathroom time. I cook for us all. Their dad is easy though. He will eat pretty much anything I cook. So what about me isn't so nice? I have gotten to the point that I feel like a servant. All of that and the oldest refuses to clean up after herself. No cleaning up after herself means I have to spend what time I would have to myself cleaning up her messes. She fights me all the way on her schoolwork. This means a normal school schedule turns into all day. I mean it is dark out when we finally finish, and sometimes she still has refused to complete half of her assignments. I am getting fed up. I have gotten far more strict about the schooling. I am getting more strict about chores. The big problem? I think she might have an ASD that is making things like this more difficult. I will be getting her tested as soon as possible. If she does, we need ti know so that we can do this right. I love her and her brother and sister with my whole existence. I really want to be able to keep her on track and happy, without feeling like a failure or feeling like I am neglecting her siblings because she absolutely requires so much more attention and patience. ..