Wednesday, October 15, 2014

Would the Real Autism Specialist Please Stand UP? Insurance Companies Denying what Doctors Prescribe

Would the Real Autism Specialist Please Stand UP?

Insurance Companies Denying what Doctors Prescribe

In the last 10 years I have dealt with a number of injustices following my son's medical care but the fight I am starting into now is proving to be the worst...

I haven't posted in a while because my son woke up a few months ago and I found he'd been possessed (not literally). He's regressed and is exhibiting the behavior that he did in his younger years, the behaviors that I had worked so hard to help him overcome. At this stage if I don't write about it I may explode. SO...

 His regression is presenting in ways such as including but not limited to these:

  • His temper tantrums are epic and his meltdowns are even worse. 
  • He destroys rooms and is physically violent with me at times.
  • He is biting himself and eating socks (literally).
  • He is acting like a 3 year old at all times. 
  • His stimming has changed.
  • His sleeping patterns have changed, they are so much worse (which is hard to do)
  • If his eating gets any more picky I'm in trouble again. I hated the picky eating issues... ALL sensory with him. 
  • Going a long with that, his sensory processing disorder is presenting off the charts some days.
  • He has developed a few TICs. 
My Son and Me

Where I live and love: 

 Where I live there are no behavioral therapist to be found, not any that will treat my child anyway. There are no specialists that see autistic children over the age of 8. I moved to this corner of the U.S. with the false belief  that things are better for families like mine. Upon arriving here, over a year ago, I immediately realized this wasn't what I thought I'd signed up for, me or my husband. Things aren't great unless your kid is under 8, I sang this constantly in my head. It took me months of pleading to find a doctor that would treat my son. The doctor I finally found had to look up autism before she saw us, I called the shots, changed his dosages, etc. No jokes about it, that is how things worked (and it wasn't the first time, in the Midwest I found this treatment as well), none-the-less I appreciated her to the ends of the earth. To my dismay (and adding to the issues that I am having medically for my son) this afternoon I was informed by her office that she will no longer see my son because she is retiring this week. THIS WEEK! However, the issues didn't stop there, the fight with the school was beyond ridiculous. (To read further about that battle check out my articles.) Autism never sleeps and it never takes a Valium; somehow though I can't imagine my life without it, chaos and all.


We were recently lucky enough to land an appointment at Seattle Children's Autism Center after waiting for over a year to be seen. AMAZING facility for autistic parents and children, they're too good! They bring to the forefront all the horrible things autism brings to a family, not what autistic children bring to the families but the horrible things the label, the definition, the transition, the unknown, the stresses and fears bring to us and then they come up with a way to address all of it. At this place they know how we feel and they know how our families feel, and they understand how our autistic children feel. They acknowledge them beyond a pat on the back and a smile. Their ways are flawless to an extent; for that hour you are in the room with that person you feel like family.

I walked out of there feeling hopeful, feeling like someone finally had our back, 2 weeks later I find  that feeling is crushed. Not by the Autism Center but by the people WE PAY to cover our medical care, the place that gives me no problems about my expensive psychiatric medicines but anything with 299.00 attached is treated like poison (299.00 is the diagnostic code for childhood/adolescence autism.) You see, our problem was that Seattle mentioned the magic denial phrase, the holy grail of parents of autistic children.... A.B.A. Therapy. The phrase that can send the best insurance companies and some doctors running. First thing first, find a NEW doctor to refer for Seattle and be denied again and start the fight.. Yeah, now I am in for THAT fight.. If you don't live in our world I'll translate... Basically we're more than likely screwed. (That'll never stop me though.)

Pamphlets to help obtain ABA because this fight is so common...

A.B.A. Therapy:

This therapy is expensive, beyond expensive. To the level that no family could afford it without help and 16 states still fight you on it (that fact is credited directly to the mother in the autism support group I help run that told me it.) I have been told 1,000 to 4,000 a month and that is conservative. Can you see why they deny? Doesn't make it any better does it? This therapy is proven, has been since the 60's. The Supreme Court upheld it and calls it beneficial. 1000's of parents stand by it and 10's of 1000's of families beg for it yet we all sit dumbfounded at an insurance companies power in providing it or not. Yet I set on the phone along side thousands of mothers who live my life and cry as a boy on the other end, whom has barely passed through puberty, tells me that this therapy is not beneficial to our children. To him I say: Have a child then tell me that. 

Yes parts of autism suck, the biggest part for us being Regence Bluecross.

Sunday, April 27, 2014

Here's to the Rock-Star Step-Parents out there....

I was raised in a blended family. Maybe not in the traditional sense of the term, there weren't always children added from both sides, just the one, but it was still blended none the less. At age 8 my parents divorced. Within the next two years both were in active relationships with other people. Back then, at 8 years old, it was extremely confusing why my parents were not still together. I had these new people that everyone referred to as my 'new' mommy and 'new' daddy when they spoke about them without realizing I was listening. It was a mind-fuck pure and simple.

I never ever stopped to think about how much of a trip it had to be for my new prospective step-parents. Actually until now, at age 30, I just now stopped and thought about that for the first time. Learning how to love your future spouses' child(ren) as they are your own is not an easy task. The myth that just because the step-parent and biological parent LOVE each other the child(ren) involved are going to instantly LOVE the new step-family is ridiculous. Sometimes that bond takes a LONG time to form, if ever. It doesn't mean that there is going to be an instant connection, it takes a great deal of work to form a new family structure with a child that has had their family life ripped to shreds. It takes perseverance, determination, and a great deal of love for the biological parent to make it work. These people are amazing for trying. AMAZING. They take on a whole new world of responsibility that they DO NOT have too and reshape a family that isn't their's to include them and in an ideal situation they take the time to get to know and form a relationship with the other biological parent, a.k.a. The Ex.

There are step-parents out there that live in hell with their step-child(ren) at times. Some of these kids are left with anger issues and act out, or on the flip side they are left in states of great depression, disconnected from everyone. The step-parents are left stuck in the middle having to go to meetings or receive phone calls from police. They stand by the child(ren)'s side and still call them their own right along side the biological parents because over time that child has became their's no matter the behavior shown by the child(ren).  There are step-parents that have absolute EVIL to deal with in the form of their spouses' ex. They fight with the step-parent over everything that they can find to argue with them over. They grossly misuse the system to get what they want. Money, donations, child support in excessive amounts, food stamps, etc. They lie thru their teeth all the time, even going as far as to make accusations against the step-parent that loves their child(ren) so much. They call CPS numerous times to report neglect at the step-parent and biological parents' house though there is NO need too. It is just a nightmare. These amazing step parents do NOT leave though. They stand by the child(ren) that they have grown to call their own.

Every once in a while you find one of the irreplaceable step-parents, the ones' that not only stick by the child(ren)'s side but they impact the child(ren)'s life. The ones' that walk into the child(ren)'s lives as a stranger and become someone that has ALWAYS been there. The one's that not only do what they HAVE to morally do as a step-parent but they do what they would with THEIR OWN child(ren), the ones' that teach their step-child(ren) to how to not only become adult's but to become GREAT adults. Those amazing step-parents that earn the right to be called NANNY or PEEPAW when the step-child(ren) whom they started to help raise so many years before become parent's in their own right. The one's that you cannot imagine your life without by the time you are my age.

My mother is one of those step-mothers to my step-brother and step-sister. She happens to be one of those step-parents that deal with EVIL everyday, but she still stays by those kids sides'. She never sways, never falters. She is there for the two of them at any hour of the day for any reason at all. She teaches both of them on a daily basis and tries her best to help them ready themselves for adulthood. She has had her name drug through the dirt numerous times and takes it with a level of grace and dignity that their biological mother couldn't find deep within herself if both of her children's lives depended on it. She deserves WAY more recognition than she receives on a daily basis from any of the parties involved in the situation. In ten years when the kids have started their own families they are going to look back to now and realize how lucky they are that she is in their lives.  

My step-mother taught me how to put on eye make-up and what they value of a dollar is. She taught me what a savings account is and what I could have if I actually utilized the account. She NEVER bad mouthed my mother to me and dealt with extremely difficult situations brought about by my little brother and myself. She had a child with our father and did NOT one time treat me any differently than she treated her own son. She was there when I went from Elementary School to Jr. High, Jr. High to High School, Graduated High School, got married, and had my babies. She is my other mother and I realize just how freaking lucky I am that she took the time all those years ago to reform my life when we were with my father. That she took the time to form a relationship with me and ALWAYS expected the best from me no matter what I was giving her at the time.

I just DO NOT think that these people get enough recognition for the job that they do! They live in impossible circumstances, sometimes, and do it all in the name of love. This Blog is for all the rock-star step-parent's out there! You do the job of 50 for nothing but a little love. Not only that but you choose to take on the job, it isn't something you have NO CHOICE but to do! A vast majority of people who grew up with step-parent's will tell you- you all are irreplaceable! So... Here's to you! Thank you!     

Friday, April 25, 2014

The Stress of Raising an Autistic Child... The Murder/Suicide Tragedies..

In light of the murder/suicide of a mother and her autistic son in Vancouver this month I'd like to take a moment to address the topic. After all this isn't the first time that the frustration of raising an autistic child has led to the death of an autistic individual and their caregiver. Sadly, this is normally at the hands of the caregiver. This issue perplexes me. I can't fathom the amount of hopelessness it must take to carry out such a heinous act. I do, however, know what it is like to feel completely hopeless living with autism.

In case you haven't read the story; April 3rd Canadian mother Angie Robinson and her 16 year old son, Robert, were found dead in their home. It was ruled a murder/suicide. Robert had been diagnosed with autism at an early age and as of lately Angie had been desperately searching for help for her son. It is reported that Robert was twice the size of Angie and she had told family members how concerned she was becoming with how difficult it was to handle him. Early last month the Huffington Post reports that Robert had put his head through the window of his mother's truck during a meltdown. Angie received respite care but it wasn't really doing a whole lot to help so she had recently inquired about residential care for Robert. A decision NO parent takes lightly. However she was turned away with no help. They didn't have help for her, nothing was available. The day before she died Angie posted this on her Facebook page: "More, more, more needs to be done for our teens with special needs, they are neglected... Canada needs more residential and respite care for families hoping to keep their children at home."

As I said, this is NOT the first instance of this occurring. "I have to admit I am suffering from a severe case of battle fatigue" Kelli Stapleton wrote on her online blog in September 2013. Later her and her daughter, Isabella, were found dead of carbon monoxide poisoning. Kelli had sealed herself and her autistic daughter inside of a van and lit a charcoal grill. In December 2013 police in an Alabama town found the body of a lady in her home but couldn't find her autistic son. They later found him drown. She had drown him outside and set the house on fire with herself in it. A Mrs. Karen McCarron was sentenced to 36 years in prison in 2008 for  the suffocation of her 3 year old autistic daughter, Katie. During the taped confession Karen told the police that she just "wanted a life without autism". One last example, A lady named Wendolyn Markcrow couldn't handle the stress of raising her 12 year old autistic son, Patrick. He had severe sleep issues that left Wendolyn without many opportunities to sleep. She tried everything she could to help her son, EVERYTHING, but nothing worked. One day she snapped and put a plastic bag over his head. She admitted to screaming for him to be quiet the whole time she was suffocating him.

As autistic mothers we live and breathe for our babies, sorry, but even more so than the typical mother. The things that we 'deal' with and 'cry for' are things that normally never cross the minds of the typical parent. We do it with a grace and dignity that most couldn't muster up if their life depended on it. We go DAYS without sleeping, we get beat by our children during meltdowns, we sit in fight in IEP meetings for our children to get the basic services they need to progress, to learn. We work continuously with our children just to teach them to talk, which in some cases can take 6 or 7 years, sometimes they never speak. Think about that- some of us NEVER hear "I LOVE YOU MOMMY". I didn't until my son was 6. Some weeks we have 5 or more appointments for our children, just to help them function. All while hearing family member give us issues about us not being able to have a job outside our homes, when are we suppose to have the time? We know more laws and medication interactions than a police officer or a pharmacist. We do all this with a smile, even if it is fake at times. We have few breaks, if any at all, and NO ONE understands what it is like to be us, to live our life, unless they too live it. The stress we feel is unmatched by most. BUT when faced with situations like described above, what is the first reaction of most of us? To become angry with the mother. How hypocritical of us. I too am to blame.

These women lived lives similar to ours, and if you don't have an autistic child than they lived lives you can NEVER imagine so how dare you judge. We, as autistic parents, know the hopelessness, the feeling that nothing is ever going to help. Or most of us do. While we may not ever understand the actual act these mothers committed, we certainly understand how they felt in the days, weeks, or months leading up to the tragedies, at least to a point. Why aren't we all talking about this stuff all the time? Why aren't more of us bringing attention to the need for more services, better programs, and funding.

 I am so glad that there are a few joining me in saying that something HAS to change, there has to be definite measures put into place when it comes to these circumstances. NO PARENT SHOULD EVER FEEL SO DESPERATE FROM HEARING "NO" SO MANY TIMES THAT THEY FEEL DEATH IS THE ONLY OPTION! As Debroah Pugh, from ACT (Autism Community Training) said,“We need to develop proper systems and we need to have a situation where a family who’s desperate actually knows where to go and they can’t be told ‘we have nothing for you'. There should be a guarantee that a family who is in desperate circumstances can actually get support.” This is something that none of us can afford to become 'The Norm'. No doubt that a large number of people now know some one with an autistic child. Maybe it's time that, as a society, you become more aware of the dark side of this disorder. 

Thursday, April 24, 2014

Opiate addicts- Is there hope for a sober tomorrow?

There is a somewhat high instance of opiate addiction in my family. It is something that is very close to my heart and invades my thoughts daily. I constantly wonder if they will ever find help. If they will call yelling at me one minute then call back crying the next, if they are going to end up in jail or the hospital. I worry constantly about them. While surfing the internet today I ran across a study called: Opiate-addicted Parents in Methadone Treatment: Long-term Recovery, Health and Family Relationships from the National Institute of Health this morning. It can be found at I was extremely saddened by the findings in this well researched study. 

They started following a group of 144 Seattle parents in the early 1990's. They were all in Methadone Clinics to treat opiate addictions. The study followed them throughout the next 12 years and documented their recovery, or attempt at it, and the lives of their children (all ages 3-14 at the start of the study). All the individuals were inteviewed several times over the years and the results compiled and released to the public. 

To summarize some of the report for you:

At the end of the survey 13.2% of the original parents had been able to maintain their sobriety over the 12 year period of time and 9.7% of the parents were able to maintain sobriety during the last 5-10 year period of the study. All the parents that were able to maintain their sobriety linked it to some sort of long term/consistent treatment, like a methadone clinic. That in and of itself is sad to me. I have witnessed the madness of methadone clinics and the behavior of most of their patients- like the "methadone nod-off" as me and my husband have come to call it. While I recognize it is the ONLY answer for some people, it doesn't make it any less disheartening that people who start there typically only maintain their sobriety by staying on there so they can be given another drug to keep them off the opiate. They also found that 25% of the original parents had actually died from overdosing or from a condition that could be linked to opiate misuse throughout the course of the study. 

46% of the original parents were NOT able to stay sober throughout the years. They had either constant or periodic opiate usage over the course of the study. Almost half of the addicts were unable to maintain sobriety! That is a real eye opener for me. How can a substance be such a large problem for an extended period of time and STILL be so easy to obtain? Things such as an astounding homelessness rate (44.8% for the individuals that still used), criminal records (90% had a criminal record from the last decade), and a heightened need for prescription drugs for other conditions (79% where only 47% of the general public use prescriptions) now plagued the individuals so many years after becoming addicted. These statistics do NOT give me much hope for the family members that I have with opiate issues. 

My biggest problem with the opiate addicts in my life and the ones I witness out in the world is the babies. They all have children that they love intensely but refuse to see how much they are messing up by using. This study even states that 1/2 of the children involved in the study were removed from their parents care during their childhood. In my experience and as mentioned in the study, in a lot of the cases the children were removed due in large part to neglect and an unwillingness to keep their house clean. 19% also claimed physical abuse from their parents. 

The point in writing this is to raise this question- Why are we not offering FREE treatment facilities for opiate addicts to get their lives back on track? If a success rate is notable as long as the individual stays in a treatment then why is treatment SO hard to obtain? A few of my family members are desperate to quit using, have been for years. They are hard core addicts that shoot up. The places they have tried to get help from are of NO help. I mean, you can detox a person in a few days, but you can't recover them unless you teach them how to live sober, and most of the places don't or do a poor job of attempting to do so. It's either that or the cost is so high that they have NO hope of getting help at the place. There are great treatment facilities out there and great programs to help with the costs, but not enough of them, only the lucky few get their help. This problem is continuing to grow and doesn't discriminate against color or age. It ruins families and ruins a large number of the next generation by allowing them to be raised by opiate addicts or placing them in the system to avoid being raised by an opiate addict. This shouldn't and really can't be ignored any longer. Something needs to change.

Most of these addicts didn't ask to become addicted or want too. They were hurt in some fashion, whether it be fighting in a war or getting into an automobile accident, and had their doctor prescribe them little pills to aid with the pain. They became addicted over time because of poor self control and doctors that didn't pay attention to their patients or the amount of medication they were dispensing. Addictions being prescribed by doctors one refill at a time and NO adequate treatment measures for correcting it- and this is suppose to be acceptable? I know, I know... FREE TREATMENT FOR ADDICTS! PSSST... Just a dream! It's a nice one though, isn't it?  

Tuesday, April 22, 2014

Nice To Meet You

It has been said that I need to blog in order to become a serious author. I am still not sure how the hell blogging is going to help me become MORE SERIOUS, but here I am... blogging. This particular blog is just to introduce myself. My main intention with this is to be more of an open book to my readers. I want the people that take the time out of their life to read my books, my thoughts, to feel like they know me. It is near impossible for me to hold down one thought in my head for long so more than likely my blogs will be more of a mixed variety. Well... here we go.. My first blog...

My name is Krystal Elizabeth Brooke. If you know me well you call me Brooke. Sometimes B. From time to time there is a Krystal, Krys, Liz, Bitch, Babe, Mommy, or Ma'am sprinkled in there. NEVER BROOKIE! That right is reserved for a special few. I don't mean to play into the cliche "I am different than every body else, I'm crazy!", BUT I AM! I do not think or react like anybody I know. Being normal and CALM is exhausting to me. Some days I am the sweetest person ever, everybody loves me, some I am quiet and introverted, depressive. There are times I am scary violent. That is NO exaggeration. I have some sort of self control because at these times I am still intensely protective of my sons, Zain and Dryden. There is a cause for my character flaws- it's called Bipolar Disorder 1.

As I mentioned I have two boys, Zain and Dryden. Zain has severe autism. He is the biggest inspiration I have ever met. Dryden is amazing. He is always here to help and has the sweetest way of losing his ever-living mind whenever he gets frustrated. Those boys have changed me down to my core. Before they were born I was a completely different person. I have also been married for 11 years. Autism has become my obsession. I have written several books aimed at raising awareness to some of the important points of the autistic plight.

There's my introduction. I'll more than likely divulge more as I blog. If you are interested you will just have to keep up with me. Next time... A real blog. LOLz.

              Brooke Price
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