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 emaxheath.com articles.) Autism never sleeps and it never takes a Valium; somehow though I can't imagine my life without it, chaos and all.
Seattle: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.